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  1. AD217 on December 8, 2009 at 3:51 pm

    Hey Julie!

    Just stopped by and read through your blog. I applaud your efforts! I think this is really great 🙂 Hope all is well with you since the end of law school/the bar.

    Talk soon,
    Aliki

  2. Amelia Swabb on December 8, 2009 at 4:32 pm

    hi Julie! I just saw the link to your blog on g-chat and read your posts. I loved reading about your experiences and about Narcolepsy which I know little about. I'm excited for you to run the marathon! I'm rooting for you!

  3. AD217 on December 8, 2009 at 8:51 pm


  4. tflygare on December 15, 2009 at 9:20 pm

    I had never heard of a band by the name of REM, so I wasn't confused at all by the name of the blog.

    It will be 36 years ago this spring that I ran the Boston Marathon for the one and only time. I hope Julie has as satisfying day as I did all those years ago.

  5. tflygare on December 24, 2009 at 10:00 am

    Sounds like a beautiful setting for a run. Running on the sand always makes it more difficult, and your struggles at the end may have been due to that.I ran a lot on the beach at Sand Key to the north in Clearwater, and it was always hard to keep up the pace in the sand.

  6. Nick on December 28, 2009 at 5:28 pm

    You're a trooper. The other day I ran about 30 feet and immediately implemented a two-day recuperation period. I'm still having flashbacks.

    It's good to see that the running is remaining rewarding, even in the remarkable pain. Nothing worthwhile is ever easy. You've already gone far more than most of us ever will.

  7. tflygare on January 2, 2010 at 6:23 pm

    "Stretching while watching mindless TV" is good resolution, Julie. But what if you stop watching mindless TV, will you also stop stretching?

    I also hated to stretch — did very little of it in my running career, although no one did much stretching back in those days. I wish I could say we didn't have mindless TV back then, but we did. So I really have no excuse.

  8. Alex Schmitz on January 3, 2010 at 12:45 pm

    try yoga!

    i used to struggle with stretching too. was just too boring … never really took it seriously and after years of long distance running started to have all sorts of troubles from tight muscles and connective tissue.

    just slip a couple of yoga sessions into your weekly running routine … will work wonders (not to mention all the other benefits of yoga!)

    good luck with your training and your race in april. just watched the 2009 women's finish on you tube … amazing stuff …

  9. Melissa Maxim on January 3, 2010 at 1:44 pm

    If it was me, I would skip the running part and just do the stretching. I LOVE stretching! Many years of ballet might have something to do with that.. Try to get your breathing in tune with your stretching and it will feel wonderful. One of my favorite stretches is letting your head and arms hang over with your legs apart a few feet. Just breath in and out slowly as you feel yourself relax into the stretch. It really feels good. And remember the cardinal rule of stretching.. it should never hurt!

  10. Christine on January 3, 2010 at 7:17 pm

    You have inspired me to stretch more! I am lazy about stretching regularly too. We should try to do it everyday!

  11. Melissa Maxim on January 8, 2010 at 11:36 am

    Wow, that brought tears to my eyes.
    Hey, I love the new stuff along the right side of your blog. The link to your fundraising page and the link to the Globe article. Your website is getting very slick!

  12. Amanda on January 10, 2010 at 7:31 pm

    PLEASE PLEASE PLEASE STRETCH! When I was running long distances (around 13 miles) I never did it. Then one day I actually tore my IT band (a very rare and strange thing to do) because my quad muscle was tight and as I hit my stride my body literally tore my IT band out of place because my muscles were so tight. This was the end of my distance running career and have had problems for years afterward (even had surgery on it). STRETCH STRETCH STRETCH!!!!! BTW, love the jersey shore.
    xo

  13. Melissa on January 13, 2010 at 2:35 pm

    Congrats! You're on your way! I like the reference to Wagner…I'm going to see Die Walkurie this summer! Epic!

  14. tflygare on January 13, 2010 at 9:04 pm

    No matter how far you intend to run, it is one step at a time. If you stay within yourself, and don't try to run too fast at first, you can make it. Just imagine running through Kenmore Square with the crowds from the Red Sox game clapping — that will move you ahead to the your goal.

  15. A Knitter with Narcolepsy on January 21, 2010 at 2:23 am

    Thank you for describing the on-set of your Cataplexy in such detail. I was diagnosed with Narcolepsy without Cataplexy this past June, but my symptoms started in 2003. Since just this past December I have had 3 episodes that sound so familar to what you described.
    I also blog about my Narcolepsy – just 2 posts so far – at http://www.knittingwithnarcolepsy.blogspot.com
    Thanks again!

  16. Amelia on January 27, 2010 at 10:10 am

    good post! running the marathon will be that much more of an accomplishment with all the obstacles you are facing. i didn't realize your medication also makes you dehydrated! i agree, don't focus too much on finishing or not finishing. you have so much to be proud of already!

  17. Melissa on January 27, 2010 at 7:13 pm

    Was I the inquisitor???? Uh-oh…

  18. Moshe on January 28, 2010 at 10:48 am

    I wish you much success. You want to have it now while you are young. I am a 54 year-old narcoleptic (no cataplexy, thank G-d!)and was undiagnosed until I was in my 40's.

    When in my 20's I was a very active cyclo-tourist (I think that is now an archaeic term) and when I was 23 I cycled cross-country. I was very much narcoleptic in those days, having had a classical teenage onset, but didn't give it much thought as it was undiagnosed and I never heard of it anyway. It wasn't really much of an issue.

    I can't predict what your experience will be but for me, by this age, the narcolepsy has completely taken over my life. I define myself by it and it defines me. I'm eating 120mg/day of pure methamphetamine and I'm always sleepy. Not only that, but my strength is leaving me on the express train out. I am thinking it is exponential.

    So go for it now. Go for all of, every little bit. It is all yours and you have a right to have it.

    It is going to be much more difficult to get it later, I would think, but I wish for you that you will be the exception.

  19. Anonymous on February 4, 2010 at 8:45 am

    Julie, you are an inspiration…keep running! I am routing for you over all the Kenyans. Monica

  20. Anonymous on February 4, 2010 at 9:38 am

    Wow – truly inspiring! Best wishes on your training and for the race. Think I'll go for a run….I have NO excuses

  21. Anonymous on February 4, 2010 at 9:38 am

    Julie,you are the greatest,thanks for taking the challenge,keep us up to date on Freddy,enjoyed the blog.
    Gordon Gow (Thomas's Poppa in Canada)

  22. metaphoria on February 5, 2010 at 12:26 am

    Hi Julie,

    So glad to find you and your blog! I am a 30 yo living with Narcolepsy who also just got into running. 🙂 Like you, I was diagnosed at 23. After the onset, I pretty much stopped identifying as an athlete. Luckily in the last few years I have realized again what my body is capable of!

    I completed a 4-mile race in December, will complete another at the end of this month, and am training (in the cold!) for a 10 k in April.

    I will keep you and your Wake Up Narcolepsy team in my thoughts! If you ever want to chat about training with cataplexy or running while sleepy, please reach out!

    Best of luck to you. Know that you are helping so many out there! 🙂 Melinda

  23. A Knitter with Narcolepsy on February 5, 2010 at 4:01 pm

    Great post Julie – Thank you so much for everything that you are doing for everyone affected by Narcolepsy. I have said to myself more than once, since finding your blog, "If Julie can run a marathon I can …"
    It may sound like a little thing, but my new "motto" helped me get the laundry done last night!
    Thank You

  24. Meatloaf on February 8, 2010 at 10:25 pm

    I'll a little disappointed that you're Snowmageddon photos of me didn't make the blog! ha. As much as I LOVE all your posts, I have to say that this one takes the cake since I got to spend the weekend trapped inside with you. Your dedication to training inspired me this weekend. Love you! xoxo

  25. tflygare on February 9, 2010 at 9:37 am

    Great pictures. Loved the escalator picture. Remember when we walked up that escalator in 2000 when it was out of service?

  26. Melissa on February 9, 2010 at 7:11 pm

    Have you been away from Boston so long that you forgot what we call two feet of snow up here? A DUSTING!!!
    Hey, why am I not listed as one of your Followers??? All my life I have been trying to be a follower. PLEASE! LET ME BE YOUR FOLLOWER!!!

  27. Amelia Swabb on February 10, 2010 at 12:58 pm

    beautiful pictures! i vote for Snoverkill

  28. Meatloaf on February 11, 2010 at 2:59 pm

    I was "with you" throughout the entire post! Thanks for being so candid and sharing this post. So proud of you for tackling all of this. xoxo

  29. Patricia on February 11, 2010 at 3:02 pm

    The snowfall in the Philadelphia area has just exceeded the most in a single year since the history of record keeping. My muscles can attest to that statement as well, after several workouts of shoveling inches of pristine white snow. I do love a good snow storm. As for defined muscles, oh the possibility… one can dream

  30. Phoebe on February 12, 2010 at 9:17 am

    Very honest Jules. Your self awareness is inspiring. Hope the day went well.

  31. Nick on February 12, 2010 at 10:20 am

    There's no martyrdom here, just a simple (and eloquent) explanation as to why this project is so impressive. Running a marathon is a feat in itself, and to do it while balancing a serious disorder and extreme medications a is testament to your fortitude. This project – this marathon – is victory through defiance. The narcolepsy and associated medications affect how you do things, but you are retaining control over the things that you choose to do. Run on. Your message is worthy and strong.

  32. REM Runner on February 12, 2010 at 7:10 pm

    Thank you for all the great feedback on my post. I was hesitant to write this one, but glad I did.

    Update: I received my medication in the mail yesterday, so got right back on track. I ran my 3 miles today and I'm looking forward to a 18 miler next Tuesday!

  33. Mel on February 13, 2010 at 2:20 pm

    Hi, just wanted to say that I love your blog! I work in a research group investigating chronic pain, anxiety and sleep problems so was especially interested in the context of your marathon training. Best wishes for your training, Mel.

  34. ~D'Lorah~' on February 16, 2010 at 11:38 pm

    excellent post…i look forward to reading part II

  35. virtualjustin on February 17, 2010 at 11:05 am

    I must admit that I have learned more about narcolepsy through reading your REM Runner account than I ever thought I would. I am interested in reading Part II!

    lol @ "Her boyfriend does not comment on snoring."

  36. tflygare on February 17, 2010 at 4:46 pm

    Great blog today. Funny how everyone believes they get really sleepy when driving. I heard a doctor at the Narcolepsy Network conference say that a person without narcolepsy would have to be awake for at least 48 hours to experience the same level of sleepiness faced everyday by a person with narcolepsy.

  37. Ellie on February 18, 2010 at 10:39 am

    It is a shame that more doctors don't know more about Narcolepsy, and especially about cataplexy and that narcoleptics dream when they take naps during the day. Things have gotten much better though in the US: when I was diagnosed 17 years ago, hardly anyone in the general public knew about Narcolepsy. Now most people have at least heard of it, although unfortunately many only know what they have seen in movies.
    I would have expected that your doctor would have recommended that you see a neurologist,though, after ruling out the normal things like mono, lyme disease, etc.
    also, at least from what I have seen, the average time between onset of symptoms and diagnosis for narcoleptics is on average actually 14 years (!). which is unacceptable.
    Ellie from nisfornarcolepsy.com

  38. Melissa on February 21, 2010 at 2:45 pm

    At least the doctor got one thing correct in her notes "Is quite physically attractive"!!! Ha, ha!

  39. NarcoGirl on February 22, 2010 at 6:30 pm

    Hi Julie-
    Awesome post. It was a bit like that for me too with cataplexy, I had no idea what was going on or that I should be paying attention to it. It sure is interesting looking backward once things start coming together!!!
    Narcogirl

  40. Meatloaf on February 24, 2010 at 1:42 pm

    Thanks for sharing, Jules. To think that I thought your knees were buckling with laughter because I'm was damn funny in our H&K; days…

    Keep writing – I love re-living this journey with you!

    xoxoxoxo

  41. ~D'Lorah~' on February 25, 2010 at 12:08 am

    wow…yet again i am thankful i dont have cataplexy, but it did help in getting your diagnosis..
    i just walked in to my doc's office and told him i was having problems sleeping at night and staying awake in the day (for years) and my sleep pattern (REM right away)
    he treated me for narcolepsy without a sleep study for 3 years…then it was confirmed
    keep writing julie…it's insightful for me…great post!!

  42. Meatloaf on March 1, 2010 at 9:25 am

    I'm calling you Wanjiru from now on! I love it…almost as much as I love you! SO proud. xo

  43. A Knitter with Narcolepsy on March 1, 2010 at 10:00 am

    It's PERFECT! You ARE leading a clan of warriors. Warriors who are fighting to improve their lives and lives of others!

  44. Melissa on March 1, 2010 at 10:42 am

    Fancy Pants Wanjiru! I love it. Your post made me teary. And it's not bc I'm crying a lot these days! I thought it was so well written and a really touching snapshot of your training experience! 🙂

  45. Amelia Swabb on March 3, 2010 at 9:43 am

    love that you have started adding photos! hope the styrofoam log helps your tendonitis!

  46. Anonymous on March 3, 2010 at 1:07 pm

    I am siding with Freddy, yes, you will complete this marathon. Rolling is a good thing…it has helped me work out some hip/foot issues. Keep going girl!

  47. joshdchamp on March 3, 2010 at 9:52 pm

    Great post. As I recover from Olympics watching injuries I'll keep cheering you on. Actually, My buddy chris diagnosed similar issues as your IT over skype when I was living abroad and he sent me…one of those
    giant foam roles just like yours! I use it all the time and I owe it to Chris. He and Freddy are on the same team for sure.

  48. ~D'Lorah~' on March 3, 2010 at 11:09 pm

    good luck…and keep on training!!

  49. tflygare on March 4, 2010 at 5:55 pm

    Second place would be great. Maybe your hips are weak because you didn't need hip strength to play squash. Who knows, just a theory.

  50. Amanda McGrath on March 4, 2010 at 9:29 pm

    YOU CAN DO IT!!!!! I am in love with those styrofoam "logs". I use them before and after any major activity at the gym and I haven't had any IT Band problems in a long time. One tip I got from a great PT gal a few years back was to make sure that I always balance the amount of time spent stretching one IT band and the other. I've found that when I don't do it equally, I get a quick flare up on the side that wasn't stretched as much as the other. Why are our bodies so complicated?!

  51. tflygare on March 8, 2010 at 5:41 pm

    The marathon finish line has moved a few times since I ran it. It was in front of the Prudential builing way back then (1874). Whereever it is, it is nice to get there.

  52. tflygare on March 8, 2010 at 5:42 pm

    I meant 1974!!!

  53. Melissa Maxim on March 8, 2010 at 6:51 pm

    Best photos yet! Expert photography! lol!
    Interesting spelling Dad..

  54. NarcoGirl on March 9, 2010 at 1:39 am

    wow-again, good luck! I've been to Boston just once when I was in high school (which was eons ago) but I just loved it. Keep up the good work!!!

  55. Emilee on March 9, 2010 at 10:52 am

    Marathon day is my favorite day of the year! Why do they bother calling it Patriots Day?

  56. tflygare on March 11, 2010 at 5:18 pm

    Good blog today, Julie. You really spelled out the reasons you are putting yourself through all this training and rehab. It was very moving.

  57. Amelia Swabb on March 12, 2010 at 9:06 am

    stay strong!! we are all supporting you!

  58. Lillian R on March 12, 2010 at 9:25 am

    I'm giving you a big fist pump from NYC! Inspiring, that's what you are. You've always been at your best in the moments when your teammates most needed you to be. It's 9-9 in the 5th game and the team score is 4-4. Look at your crowd of supporters behind the glass, bounce the ball 5 times, remember to breathe and just keep going!

  59. Sze-Ping Kuo on March 12, 2010 at 10:08 am

    We are cheering for you from MD! Your dedication is inspiring. Using this forum to make others aware of sleep disorder / narcolepsy is truly wonderful. Because narcolepsy has no cure, it becomes a management issue. You have just demonstrated an important aspect of managing narcolepsy.

  60. Meatloaf on March 12, 2010 at 10:11 am

    You're amazing! Keep fighting. All your hard work will pay off in the end. We're all SO proud of you Can't wait to cheer you on. Love you. xoxo

  61. Anonymous on March 12, 2010 at 11:03 am

    Julie, I am so glad you are fighting for this issue! Keep going, don't stop. I know you are out of your comfort zone… You are an inspiration! Thank you

  62. Julia on March 15, 2010 at 2:46 am

    Yay!! I'm so happy that your knees are doing better. There is not a doubt in my mind that you won't finish the marathon. You are such an inspiration!!

    P.S. Look at me, figuring out how to post on this…

  63. tflygare on March 15, 2010 at 11:19 am

    Running certainly has its ups and downs, along with the weather. Good for you to finish the trial run/walk in that miserable rain!

  64. Amanda McGrath on March 16, 2010 at 1:57 am

    You are a strong and powerful woman! I wish I had what you have – a lesser person (me) would've given up. xoxox sending you hugs filled with strength and determination

  65. Mel on March 16, 2010 at 12:04 pm

    I'm glad to hear you're getting back into training! Unfortunately, it looks like my injury is going to keep me out of the London marathon this year. My charity have been great about it and given me a place for 2011. I'm also hoping to do the Dublin marathon in October of this year.

    I hope your recovery continues going strong. Keep up with your rehab routine – I hate it too but it has to be done!

  66. Melissa on March 24, 2010 at 10:48 am

    I enjoyed reading this "watered down with a touch of sugar" explanation. 🙂 As someone who is definitely guilty of burning the candle at both ends, it's really interesting to learn more about what happens when we sleep and how important it is to get enough of it! Thanks, Jules!

  67. Tricia on March 24, 2010 at 3:04 pm

    Sleep is vitally important to health.
    We can stare at an infant for hours even while sleeping. Then we grow up and never even question the quantity of sleep we are getting, let alone the quantity of sleep.
    We are not really so smart after all.

  68. Amelia Swabb on March 26, 2010 at 8:55 am

    Sleep is a very interesting topic to study, I took a psych class at Brown about it! When I'm really exhausted and take a nap I often get into a state of sleep paralysis, where I think I'm dreaming but I'm also awake and want to move my muscles and get up but can't. It's kind of scary! Sometimes breathing is difficult too. Is cataplexy similar to that? Interesting stuff Julie! I didn't realize a lot of what we know about proper functioning of sleep was discovered through the study of narcolepsy.

  69. Anonymous on March 28, 2010 at 10:22 am

    wonderful views of spring in Washington, DC

    thanks for sharing.

  70. tflygare on March 28, 2010 at 5:02 pm

    Great pictures. Will you take your cameral on the marathon route?

  71. GS on March 29, 2010 at 9:12 am

    julie, i just saw your profile in the Boston Globe. i saw that you were having bad reactions to medications. undoubtedly one of the medications you have tried is provigil. i used provigil a few years ago and had terrible reactions with dryness of the mouth and eyes and headaches. then about 2 years ago, i eliminated caffeine on a whim and found 2 things: first, my morning wakeup was 100 times easer. second, i re-tried my old provigil and found it worked awesome. net-net, if you haven't tried it yet, cut your caffeine. it takes about 5 days to leave your system and you will experience headaches and withdrawal symptoms. after you are clean, notice the difference and see if it helps.

  72. meg on March 29, 2010 at 10:21 am

    Julie — I was so amazed to see your piece in the Boston Globe. I, too, have narcolepsy. I am 31 years old, in graduate school, working full time, and just trained for and completed my first marathon (Chicago in October of 2009).

    I take provigil (and a lot of it) on a daily basis. It has definitely changed my life dramatically. I have no idea how I managed to graduate from college in 4 years without being able to complete any reading assignment or remain awake through any class…I honestly figured that everyone was as tired as I was – it was college afterall. When I enrolled in graduate school I couldn't take it anymore so I went to the Dr. After a sleep study it was easy for my neurologist to determine that my narcolepsy was significant/dangerous if untreated.

    I am really looking forward to reading your book! I. too, am not ashamed at all by the fact that I have narcolepsy. Thank you so much for being so public about your struggle. Good luck with Boston!!!!! There is NO feeling in the world like completing a marathon.

  73. Anonymous on March 29, 2010 at 9:27 pm

    Jules! I think about you all the time. Your beauty and determination, your integrity and your humor, your love of life and all it's obstacles…. is amazing. YOU are amazing. Good luck in Boston. You'll rock it. I will be there in spirit!
    Sending love from NM, FOB

  74. Amelia Swabb on March 30, 2010 at 9:13 am

    Julie you're famous!!

  75. Phoebe on March 30, 2010 at 9:19 am

    Nice article Jules. I forwarded it along to many people!!

  76. Sue D on April 3, 2010 at 10:08 am

    What an engaging and accurate description of what it's like to live in a world between sleep/dreaming and being awake!

  77. Sue D on April 3, 2010 at 10:15 am

    Thanks for putting yourself out there to raise awareness. You go, girl!

  78. tflygare on April 3, 2010 at 1:26 pm

    Great description.

    Sox was excited to see her picture on the internet.

  79. duff8 on April 3, 2010 at 10:09 pm

    So brave of you to share this story. I can relate all to well and really appreciate your honesty.

  80. Amelia Swabb on April 5, 2010 at 10:16 am

    great description julie. that has happened to me before too the sleep paralysis and hearing a ringing noise! usually when i'm exhausted and napping mid-day…it's such a scary feeling, like you're trapped in both worlds.

  81. duff8 on April 6, 2010 at 12:26 pm

    DC is as beautiful as ever. Having attended college in DC, I know first hand just what you have captured here. Oh the memories of quieter times, simpler times. That was 30 years ago. Thanks for the trip down memory lane. The photos and the script are truly joyful.

  82. Meatloaf on April 7, 2010 at 1:07 pm

    You're so lucky to have such an amazing dad and even luckier to be able to share such an incredible bond. Keep up the good work! Almost there…! xoxoxo

  83. Melissa on April 8, 2010 at 11:32 am

    I'm so proud of you, friend. Beautifully written post. You have lots of love and support throughout this journey bc you give lots of love and support. What goes around comes around! 🙂

  84. Justin on April 9, 2010 at 9:37 am

    great shot of the u.s. capitol!

  85. Phoebe on April 9, 2010 at 9:53 am

    beautiful pics!

  86. Emilee on April 9, 2010 at 10:17 am

    My favorite is the zoo sign 🙂

  87. Julie on April 9, 2010 at 3:30 pm

    There all my favorites, they are you essence of Washington, shows what a beautiful city Washington is.
    Julie Marsland

  88. A Knitter with Narcolepsy on April 11, 2010 at 3:02 pm

    Thank you for sharing your feelings. Thank you for being "with" me in this struggle.

  89. Anonymous on April 12, 2010 at 7:19 pm

    I'll be thinking about you the whole time Julie! And sending you tons of love and support and strength. I know you can do it!!! Love, Katy (cheer-recipient, 2006)

  90. Emilee on April 12, 2010 at 9:17 pm

    So exciting! What's the website to track your progress? Please post!

  91. Amelia Swabb on April 13, 2010 at 9:19 am

    Gorgeous pictures Julie! Especially love the Monument and Capitol photos

  92. Phoebe on April 13, 2010 at 9:28 am

    Now it is YOUR turn to get cheered! HOOOORAAAAYY JULIE!!! 🙂 You are going to do so awesome! I'm sending all my running energies to you for Monday. xoxox

  93. Phoebe on April 13, 2010 at 10:03 am

    BTW – great post of your recent history of friend-support. You are the ultimate encourager and go-to fan. Although your posters and enthusiasm spans many many years prior to 2006! You would have the longest post ever if you displayed ALL the love you give your friends over the years.

  94. Melissa on April 13, 2010 at 11:19 am

    I wish I could be there to cheer you on from the sidelines…but I'll absolutely be there in spirit with you. Remember: it may be easier to look back because you can't see the future, but keep looking forward! 🙂 Love you!

  95. Meatloaf on April 13, 2010 at 1:24 pm

    I can't wait to cheer you on!!!! We'll be the loudest fans on the sidelines because we all know you do the same for us. Now it's my turn to cheer on my roommate 🙂

  96. Matt on April 14, 2010 at 9:46 pm

    I'm not sure if you are aware of it but recently they found the antibody that appears to cause narcolepsy. http://www.jci.org/articles/view/41366

    Trib2 is highly expressed (produced) on orexin neurons. Interestingly, Trib2 is also highly expressed on certain immune system cells, and in particular a type of leukemia called AML. This study is pretty much the smoking gun proving narcolepsy is an autoimmune disease.

  97. REM Runner on April 14, 2010 at 11:33 pm

    Hi Matt,
    Thanks for your comment. Yes, very exciting about the Trib2 antibody. This is part of the increasing evidence that narcolepsy is an autoimmune disorder. Exciting developments like this one compel Dr. Mignot to take the next step in line of research, the Immunochip Project.
    -Julie a.k.a. REMRunner

  98. Kim on April 15, 2010 at 8:02 am

    Awesome post Julie! Thanks for the information. I did not realize Dr. Mignot needed the funding to continue his research. I am going to blast this if you don't mind!!

  99. Justin on April 15, 2010 at 10:22 am

    What is the significance of establishing narcolepsy as an autoimmune disorder?

  100. REM Runner on April 15, 2010 at 11:02 am

    Hi Justin,

    Thanks for your question! The significance of establishing that it is an autoimmune disorder is this: Right now, we know that a particular group of cells, called hypocretin have disappeared in the brains of people with narcolepsy. However, we don't know precisely why this is happening. Why and how did a very small group of cells in MY brain disappear as opposed to anyone else's? Knowing why this neurological degeneration is taking place is a huge step forward in our understanding of this disorder and would shape the future of the research in this field.

    The brain is full of great mysteries, so you have to take one step at a time towards understanding and treating it. Hopefully, research in this area will lead to novel therapeutics (treatments)in the future. In addition, the a greater understanding of what's causing the neurological degeneration in people with narcolepsy will most likely lead to advancements for many other conditions.

    Thanks for your interest, hope that helps!
    -Julie a.k.a. REMRunner

  101. Meatloaf on April 17, 2010 at 8:46 am

    GO REM RUNNER!!!!!!!!!!! Can't wait to hold those signs on Monday! xo

  102. bdee on April 17, 2010 at 9:29 am

    Good luck, Julie! I'llbe pulling for you and (hopefully)tracking your progress online. Will you post your (chip) number on this site?
    Barbara Dee
    P.S.Sent in my donation today.Hugs to you!!

  103. Michelle on April 17, 2010 at 9:44 am

    You are amazing!! Keep on running! Keep on dreaming!! Good luck!! Michelle Hemingway

  104. Amelia Swabb on April 17, 2010 at 11:04 am

    Beautiful post Julie! I love that poem. Good luck on marathon Monday, you'll go great!!

  105. tflygare on April 18, 2010 at 9:26 am

    I would have listened to the theme from Rocky during my marathon run. Unfortunately, there were no ipods then and the movie didn't come out for another year. But Rocky is a great inspirational song. Some people also like "Eye of the Tiger" from a later Rocky movie.

    Good luck, REM Runner.

  106. A.Cook on April 18, 2010 at 3:50 pm

    The big day is almost here–I'm so excited to see you tomorrow!!!
    That's awesome that someone gave you a shout out on the dry erase board!

  107. Anonymous on April 18, 2010 at 5:22 pm

    Remember the Name – Fort Minor

    Goodluck!

  108. Amelia Swabb on April 19, 2010 at 9:19 am

    Good luck today!!

  109. Phoebe on April 19, 2010 at 9:55 am

    GO JULIE GO JULIE GO!!!!

    It was so great to see you last night. You look so great and I could feel your positive energy. I'm sitting in my quiet office looking out the window to a beautiful blue sky – what a perfect day to run. You'll be starting in about 30 minutes! xoxo

  110. Anonymous on April 19, 2010 at 12:39 pm

    Im so proud of you A1!!!

  111. Phoebe on April 21, 2010 at 11:12 am

    This is weird… "Narcolepsy" gets a red line under it on gmail and in this blog posting saying it is not spelled correctly?! What the heck? The choices it gives me are: narcoleptic, narcoses, nympholepsy, narcotize!!!

  112. Melissa on April 23, 2010 at 10:59 am

    AHHH! How can you leave me in suspense like that! I still haven't heard the full story! And YOU are most certainly "it" in this current round of phone tag! 😉

  113. tflygare on April 24, 2010 at 6:31 pm

    Wow! What an eventful morning. How could you run a marathon after all of that?

  114. acookinthemaking on April 25, 2010 at 10:23 pm

    You are amazing and so inspiring! I love this post, and I loved seeing you that day. Congratulations again!!!

  115. Amanda McGrath on April 26, 2010 at 7:33 am

    You are incredible!! I wish I could've been there cheering you on! Congratulations! You are an inspiration 🙂 xo

  116. Meatloaf on April 26, 2010 at 9:30 am

    Could not be more proud of anyone. You are incredible! So honored to have been able to cheer you on! Love you. xoxo

  117. tflygare on April 26, 2010 at 10:03 am

    Great blog. Getting passed by Elvis must have been something — especially when you think that he is 75 years old!

    I am so incredibly proud of you for accomplishing this.

  118. Amelia Swabb on April 26, 2010 at 12:48 pm

    Congrats! You made it in under 5 hours? That is SUCH an accomplishment! I'm so proud of you!

  119. A Knitter with Narcolepsy on April 27, 2010 at 6:52 am

    Thank you Julie! Thank you for showing me and everyone what is possible for people living with Narcolepsy! Thank you for giving me the words to express what life is like with Narcolepsy. Thank you for inspiring me to figure out what is possible for my life with Narcolepsy.
    Thank you!

  120. Anonymous on April 27, 2010 at 8:27 am

    I loved this entry Julie! As I said before, I think you may have been the "smileiest" marathoner last Monday. I was glad to be part of your running team. Thanks for your inspirational story.

  121. NarcoGirl on April 28, 2010 at 6:57 am

    Good for you!!! You really prove that Narcolepsy isn't the end and that we should all just curl up in a ball. You're very inspiring. Keep up the great work and thanks for writing about the whole marathon experience-its super interesting even if you don't have Narcolepsy!!!! Congratulations girl!

  122. Phoebe on April 28, 2010 at 11:35 am

    Awesome pics and blog Jules — I heart REM Runner!! xoxo

  123. Meatloaf on May 16, 2010 at 9:49 am

    Great post, Jules! What an exciting goal for narcolepsy and an unbelievable accomplishment for breast cancer. Keep writing…I miss your posts. Xoxo

  124. Tricia Higgins on May 17, 2010 at 6:51 pm

    I wish I was attending as well.

    Have fun, and no wheelies.

  125. A Knitter with Narcolepsy on May 18, 2010 at 2:44 pm

    I look forward to your pictures.

  126. Anonymous on May 20, 2010 at 10:41 pm

    As a Mom of a daughter with narcolepsy and a breast cancer survivor I enjoyed your post. I was so happy to hear about you running the Boston Marathon. I hope you will be successful with your goals for raising awareness of Narcolepsy. I hope we will see you at the Narcolepsy conference in D.C. in October.

  127. Anonymous on May 25, 2010 at 3:52 pm

    Thanks for increasing awareness of the disorder by sharing your experience. Voices are always needed on the subject. Hope you don't mind me asking, but what kind of treatment have you figured out. Is it pretty successful?

    Thanks,
    ~Anna~

  128. REM Runner on May 26, 2010 at 12:25 am

    Hello Anna,

    Thank you so much for your comment. It's such a pleasure sharing my experience with narcolepsy via this blog, thank you for reading!

    Right now, I take Xyrem at night and generic Ritalin during the day. Adjusting to these medications was very difficult for me, but I found a fairly good balance eventually.

    To be honest, the best "treatment" I have now is taking naps once or twice a day. Because I work from home, I have the ability to nap whenever I feel like it. This luxury has immensely improved my daily life. Now, its hard to imagine that I expended so much time and energy fighting my sleepiness when short naps relieves this struggle so much quicker.

    If you'd like to discuss more about how I manage my symptoms and medications, please feel free to email me at julieflygare@gmail.com.

    All my best,
    Julie

  129. Meatloaf on June 1, 2010 at 10:06 pm

    I VOTED! This is great! Woohooo!

  130. A Knitter with Narcolepsy on June 2, 2010 at 12:13 pm

    This is so great! Thanks for getting the word out. I voted and I'm telling all of my family and friends to vote!

  131. Anonymous on June 5, 2010 at 7:33 am

    Thanks for writing this entry. Exercise is a wonderful thing and I am so glad that you felt better after taking on the challenge of training for a marathon. Someone very close to me has narcolepsy and cataplexy and is very active in two sports: hockey and tennis. These sports not only help him physically, but also continue to keep his self esteem high.

  132. Nike Blazer on June 8, 2010 at 4:32 am

    Yes, exercise make sure your body is fit and fine… I use to jog 3-4 KM a day and feel fresh all day along… and i am happy you feel better after some work out….

  133. The Wades on June 19, 2010 at 4:35 pm

    Julie, I don't even know you and I'm super proud!! 🙂 What a great post, great story, and great attitude!

    I have a nine year old boy with N. I'm going to show him this post to encourage and inspire him. Each day gets a little easier. Stories like this should help him feel more capable and not as ashamed.

    Thanks for sharing. So happy to find your blog.

  134. Lynn on June 21, 2010 at 10:53 am

    I was just diagnosed last week, and loved reading your blog, having trained for my own non-gazelle marathon before I developed symptoms. I'll be pushing the Pepsi grant every day on Facebook…

  135. Jason on June 26, 2010 at 12:48 pm

    Come down to Houston between now and the end of August – I'll show you hot!! 😉

  136. Bombolino on July 21, 2010 at 6:38 am

    Please let us know the results of your data collection! This is quite interesting. Personally, to combat sleepiness, fatigue and mental disorder, I run and/or work out at the gym daily – not a super long session, maybe 45-60 minutes – and also take frequent walk breaks. That's been my habit for years, even though I was only recently diagnosed with narcolepsy. It definitely helps!

  137. Meatloaf on August 19, 2010 at 9:20 am

    Wow! So excited to watch. xo

  138. NarcoGirl on August 19, 2010 at 9:45 am

    Hey Julie-so good to see you post! Hope things are going well 🙂 I'll definitely set my DVR to record it, and I'll repost the link on my blog as well.

    Have a good one!

  139. Emilee on August 31, 2010 at 9:16 am

    Congrats WUN!

  140. Phoebe on August 31, 2010 at 10:10 am

    Congratulations to such successful fundraising!

  141. Tricia on September 1, 2010 at 9:27 am

    Wake Up Narcolepsy has picked up great momentum. Your fundraising skills are to be commended.

  142. Smartwool socks on September 7, 2010 at 9:17 am

    I am so proud of you!

    So great to see you run.

    Keep running!

  143. lab on September 15, 2010 at 11:37 am

    I just found your blog yesterday so I'm a little late in posting, but I was also thinking of the article that Matt referenced above. On top of all the other evidence, the actual confirmation of the presence of that antibody pretty much proves that Nw/C is autoimmune.

    I think the most important info that might come out of the ImmunoChip study is discovery of any as-yet-unknown genes that might be involved. If they can couple that with the genes they already know about (HLA DQB 1*0602 and DRB1*1501), there’s a chance they could figure out exactly where things go wrong and prevent it from happening. The Reality Check, though, is that for those of us whose immune systems have already waged war on our hypocretin neurons and clearly won, we’re pretty much out of luck. Yeah, call me Debbie Downer, but until they find a way to repair brain damage (stem cells?), finding a good medication regimen is about the best we can hope for.

    There are a few European clinics that have had some success in treating very new cases by giving the patients high doses of antibodies. It doesn't seem to work for everyone, but in some cases, they've actually been able to reverse C. The catch, though, is that none of the effects have persisted for more than a few weeks. It seems our immune systems are just dead-set on getting rid of our hypocretin neurons 🙁 But the limited success that they *have* had makes me hopeful that new treatments will become available in the future that can thwart this awful disease once and for all.

    Interestingly, the genetics of Nw/C are very similar to those involved in Type I Diabetes (also an autoimmune disease). And one of the same genes (DQB1*0602) that make us susceptible to developing Nw/C offers very strong protection against developing T1D. Hey, ya win some ya lose some, right? 🙂

  144. Patricia Higgins on September 20, 2010 at 9:51 am

    Dear J,
    The photo is great, the suit fabulous, and the gal the best.
    You did a marvelous job at NIH and I equally felt honored to be a a part of that venue.
    I hope our paths continue to cross and that there are no limits to what we can do.

  145. Amelia Swabb on September 21, 2010 at 1:52 pm

    Amazing Julie! Great to hear you are doing well and doing great things! xoxo

  146. NarcoGirl on September 24, 2010 at 10:20 pm

    Way to go! Beautiful pictures too. Good luck with your training-looking forward to reading about it 🙂

  147. Melissa on September 25, 2010 at 10:18 am

    This is definitely my favorite post! Especially since I hate "evil change" too…"When you least expect it, you may run into something unforgetable." You continuously amaze and and inspire me. 🙂

  148. NarcoGirl on October 1, 2010 at 2:15 pm

    Don't be so hard on yourself….after 7 miles most people (myself included!) would have had to have an ambulance come pick them up insted of a roommate 🙂

    Way to go!!!

  149. Melissa on October 2, 2010 at 3:12 pm

    Good friends are priceless, huh? 🙂

  150. NarcoGirl on October 7, 2010 at 8:53 am

    Good Luck! You'll be on my prayer list today. Take a deep breath…you'll do great!!!

  151. Tricia on October 7, 2010 at 10:33 am

    I look forward to hearing from you after the visit to the Hill. Go and get em Julie.

  152. Melissa on October 7, 2010 at 11:32 am

    I'll be thinking of you today! You can do it! 🙂

  153. Amanda McGrath on October 7, 2010 at 7:07 pm

    GOOD LUCK!

  154. Amelia Swabb on October 7, 2010 at 10:16 pm

    good luck!!

  155. Gary Johnson on October 8, 2010 at 9:53 am

    Great job on your narcolepsy advocacy efforts. You are an inspiration! Can't wait to here how it went on Capitol Hill.

  156. Amelia Swabb on October 12, 2010 at 11:31 am

    So glad your visit was successful!

  157. tricia higgins on October 12, 2010 at 3:09 pm

    You were a very large part of the successful march to Capitol Hill. My day started by leaving the hotel with a buddy at 7 am. The day was thrilling and exhausting. I look forward to my next visit.

  158. dontdream on October 14, 2010 at 9:07 pm

    You are completely correct about Dr. Mignot. At our first conference he just sat down at our lunch table, and there were other doctors at the table that wanted to talk to him but he made sure to keep Jason and I in the conversation and ask Jason for his opinion. He always makes the time even though usually Mali is chasing him out of the building because he is running late to get somewhere!

  159. Tricia on October 15, 2010 at 11:22 am

    What an interesting perspective. DR Mignot has accomplished so much for PWN. He is overextended on so many levels, but he doesn't seem to wear the look of fatigue quite like I do. Hearing him speak was truly an honor. Kudos to WUN for all your fundraising endeavors.

  160. servane briand on October 15, 2010 at 7:02 pm

    Julie,
    Congrats on running the Boston Marathon. I am extremely impressed and will follow your efforts. You are being a great role model for many in and outside the narcolepsy community. I am very moved by what you say about Dr Mignot, since I know how true it is (disclaimer, we have been married for many years now…) and I and his two children will continue to support him everyday in his quest for understanding narcolepsy, improving the lives of narcoleptic, and eventually finding a cure; again, bravo for your accomplishments and happy running (our younger son is also a runner!)

  161. Jessica J. H. Utley on October 18, 2010 at 12:26 pm

    Hi!

    This is a bit random, but I was just recently diagnosed with Narcolepsy… two weeks ago, and since then I've been doing a lot of research… that led me to your blog!

    I'm a "retired" runner (though I'm only 25), and I live just south of DC (C-ville, VA). I hate that I JUST missed the conference in Arlington… I didn't really know what Narcolepsy was until I was diagnosed.

    Anyway, you put your e-mail address down for people who would like to get involved. I thought it would be a bit strange for a stranger to send you an e-mail out of the blue, so I'm posting here.

    I have not met a single person who knows what Narcolepsy is, or takes it seriously, since I found out about my diagnosis. I would love to connect with others (outside of the WWW) and get involved, but I don't really know where to start. I'd love to hear your thoughts… and if you aren't too freaked out by my ridiculously long comment, feel free to e-mail me: jjhutley@gmail.com

    I have a blog, though I haven't posted in a while –

    jessicajhutley.blogspot.com

  162. tricia on October 21, 2010 at 11:44 am

    Poignant, you have rendered me speechless,I know this story all too well.

  163. MJM on October 21, 2010 at 7:22 pm

    That was by far one of your best posts. I felt like I was right there with you..

  164. Saraiah on October 21, 2010 at 9:30 pm

    You are not the only one; and it's nice to hear I'm not the only one, either! I can't tell you how many times I've had sleep attacks and ridden far past my stop on Metro trains and buses, finally realizing that I needed to get off and turn around. Or I've gotten on the wrong train altogether. Or I get on a train and in the short time since it pulled into the station, can't remember in which direction to face when I sit down because I can no longer remember the direction in which it's traveling. Sometimes I know I've been asleep, and sometimes it's as if I've been a little bit asleep? Sometimes I'm not sure whether it's that I've had a microsleep, or if it's part of the attentional problems that are associated with narcolepsy.

    When I know I'm having a really bad day, I'll often ask bus drivers or friendly-looking passengers to wake me at my stop.

  165. Anonymous on October 22, 2010 at 4:37 pm

    I love this post! Your description paints a scene that is familiar (to PWN), with aesthetically interesting imagery, but that is also foreboding and a bit haunting, and in the end sublime. I mean haunting in a good way, like Van Gogh's crows in the beautiful field of wheat. I will definitely come back for more like this!!

  166. Leah on October 22, 2010 at 5:00 pm

    This was a great post!! I became engulfed in the story and kept eagerly reading until the end. I hope you are writing a book about all of your experiences with narcolepsy. I agree with the above poster that this post was both beautiful and haunting – the way you explain it would help more people understand how debilitating narcolepsy can be.

  167. NarcoGirl on November 1, 2010 at 9:11 am

    Seriously cool pumpkin, Julie-I love it!

  168. Phoebe on November 1, 2010 at 9:43 am

    cute pumpkin, pumpkin!

  169. Saraiah on November 1, 2010 at 12:00 pm

    Good for you! Where are you napping – are you putting your head down on the desk, or is there a place where you can actually recline or lay down for awhile?

  170. Jackie on November 1, 2010 at 12:01 pm

    That pumpkin is awesome! I love to carve pumpkins! I usually carve 3 or 4 every year but this year I decided to get married instead!

  171. REM Runner on November 1, 2010 at 12:56 pm

    Saraiah – Great question! I was able to put my head down on a desk inside a co-worker's office while he was away. However, there is also a small private break/nursing room off of a women's bathroom in my office. My next step is to try napping here. 🙂

  172. Kim on November 1, 2010 at 4:17 pm

    Hi Julie,
    Having had the awesome opporunity to have Dr. Mignot as John's doctore, you have nailed it. He is a very modest man who always has time for the "the little people." As busy as he is, he always has time for us either in person or over the phone. I am thrilled you had the opportunity to meet him. I am also running Boston next year for WUN and all my fund raising will be going to Stanford. If anyone is going to find a cure it is Dr. Mignot. Hope all is well. Keep up the great work:) Kim

  173. Sasha Louisa on November 9, 2010 at 11:36 pm

    Julie,
    I can understand why you are advocating for us PWN, but do you really think that our condition is a priority? I know that narcolepsy has held me back so far from my full potential, but I'm studying now to be a doctor and there are people in far worse conditions that could use $100,000 to SURVIVE. I am grateful for the knowledge that the science community has uncovered about narcolepsy, but perhaps we could wait our turn. Life is rough for us, thus we can better sympathize with the pain of those with more severe disease.

  174. Jacqualeah on November 10, 2010 at 5:00 pm

    Julie, as a non PWN I appreciate what you are doing and HAVE done for those suffering from your similar conditions. Working for an attorney that suffers from narcolepsy has given me a greater appreciation for my own abilities since they arent hampered by narcolepsy. Dont worry about Negative Nancy (aka Sasha Louisa). She is one person. Take pride in what you have done and what you have dedicated your life too. At least you know that what you have done by merely scratching the surface will change the experience others will have with narcolepsy. Even if you yourself dont get to experience the advances in science at least youve dedicated your life to helping others.

    P.S. Narcolepsy can put you in a life threatening situation. Dont you read this blog regularly Ms. Medical School? Julie got lost in DC and let me tell ya YOU DONT WANT TO GET LOST IN DC IN THE DARK! Good thing she SURVIVED that!

  175. Emilee on November 18, 2010 at 9:32 am

    Yay Julie!

  176. thomas.flygare on November 19, 2010 at 11:49 am

    Important message for everyone.

  177. SirSleepsALot on November 20, 2010 at 1:10 am

    Well said. I am inspired by how you have chosen to use the biggest obstacle in your life as a vehicle to be a better person and do more important, worthwhile things. Your attitude strikes me as a brave and overwhelmingly healthy way to confront chronic illness and the mountain of negativity it can bring to one's life. Thank you for speaking out and being such a positive rolemodel for the Narcoleptic community, and for anyone dealing with any type of life-altering illness. I find strength in your courage.

  178. Hopefully Awake on November 20, 2010 at 7:40 pm

    REM RUNNER,

    I accept your Double Dare and I think I may finally try to run in a half marathon. This is something that I always wanted to do but never had the motivation for in the past but I have been feeling a little better and my fitness level is up as well.

    “I'm only this far
    And only tomorrow leads my way”
    #41 Dave Matthews Band

    Sincerely,

    Hopefully Awake

    I would also like to let everyone know that I have been so inspired by REM RUNNER for the past year that I decided to write about my experiences with narcolepsy as well. Check it out because I am finding that talking about my disorder is helping me deal with it better. http://copingwithnarcolepsy.blogspot.com/

  179. Allena on November 21, 2010 at 12:08 pm

    Thanks for the inspiration!

  180. Incognito Blue on December 3, 2010 at 6:42 am

    I Second The Awesomeness of Your Pumpkin!
    I have had previous bosses backlash and make jokes of sleep. They knew something was up but was not completely sure. That was another reason for me sheltering my Narco from co-workers and general public. I am pondering telling my current boss but I know he sees me becuase we are on camera and I can read it in his eyes that he sees me asleep standing up! He knows I cycle so he would ask me about a cycling adventure and how tired I might be, thats a wakeup call to me he is paying attention. More To Come, Keep Up The Blog!

  181. Carlyn on December 9, 2010 at 9:08 pm

    Come to my yogilates class with me! 10 dollars per class or 88 dollars for 10

  182. Kori on December 10, 2010 at 8:59 am

    Hip Hop Yoga. Seriously. If you're ever in Boston, I will make you go with me. And yes I read your blog. OH HAY!

  183. Allena on December 10, 2010 at 9:20 am

    A lot of places offer specials or discounts to new students. You could keep switching for a new deal.

  184. Emilee on December 10, 2010 at 9:32 am

    Kori, send REM the details on hip hop yoga so I can explore this!!!!

  185. The Dreamer on December 10, 2010 at 10:46 am

    Wow, that's something I didn't know…. I thought it was just guys like me that can't touch our toes. And, not just because I unexpectedly put on a ton of weight a few years ago….

    Someday I should get more active (than walking, currently limping, 3+ miles a day), perhaps when I stop being so accident prone….

  186. Melissa on December 10, 2010 at 11:12 am

    Good advice, REM Runner! Especially good to remember during the holidays…I wish we could be Yin Yoga buddies again! 🙂

  187. marcianna on December 13, 2010 at 10:26 pm

    Nice Julie! This is inspiring to those of us who are not only up to braving the cold, but braving newbie status. You are absolutely right. You have got to start somewhere! Doing anything to better yourself is never a waste of time. Glad you skipped the shopping it made way for a beautiful article, and your own sense of peace. Both are priceless. Thank you!

  188. Meatloaf on December 14, 2010 at 9:26 am

    Help! I can't touch my toes! Move back to Boston so you can inspire me to go to yoga with you. Love you. xo

  189. Shai Hulud on December 14, 2010 at 6:00 pm

    Very inspiring post, makes me feel energized to try exercise. It is so hard sometimes to find time, for anyone. When you complicate one's life with chronic illness, it makes it that much harder. Thank you for the good example!!!

  190. thomas.flygare on December 22, 2010 at 10:25 am

    Good for you, Julie! This looks like a promising line of research, although it will take some time to materialize. Hopefully your blog will encourage others to voulunteer.

  191. Jackie Wagner on December 22, 2010 at 10:50 am

    Congrats Julie on your participation in the stem cell research! I know it was tough for you to work through but you did it, not only for yourself but for so many others battling your same issues! Not only should you be honored but proud of yourself as well!

  192. Robert M. Burnside on December 22, 2010 at 3:39 pm

    Well Julie, although you've demonstrated this all along, you now literally have "skin in the game" combating narcolepsy. Thanks for being a light along the path for others that we can indeed battle this disease, and with good will and the strength of many, it will eventually be overcome.

  193. The Dreamer on December 23, 2010 at 2:40 pm

    Hmmm, I always get hit with extreme sleepiness during or before take off and usually just succumb to it and sleep until landing or just after, or more recently (since I've been on CPAP) long enough to miss out on in-flight beverage service.

    I haven't yet figured out how to properly occupy the time that I'm awake during a flight….though I know I used stay awake during flights.

  194. Kim on December 23, 2010 at 3:06 pm

    Great post Julie. What an awesome outlook and one that I hope more people share so as to raise awareness for narcolepsy. I too am very taken off guard when someone truly understands narcolepsy. Then I begin to understand how important it is for people to know about it:) Merry Christmas and let the training start!

  195. Saraiah on December 24, 2010 at 9:49 am

    Though I'm not in the position of having to deal with the conundrum myself, the various complications of dating with narcolepsy are sure topics I see and hear discussed a great deal within our community. And yay for the narcolepsy elevator speech for strangers! What a good idea.

  196. Paul Atreides on December 24, 2010 at 10:32 am

    Very interesting that scientists can make hypocretin stem cells from simple skin cells. Thank you for doing your part! In a related note, Stanford has a program whereby you can donate your brain in the furtherance of narcolepsy research. Considering participating is perhaps a morbid thought, but would be a very giving gesture for anyone with Narcolepsy. They also need brains from those without Narcolepsy as 'controls', so anyone can donate.

  197. Guy McBearfly on December 24, 2010 at 1:22 pm

    Great post! You are a great example for how to deal with the topic of N in everyday interactions. I'm going to give this a try. Also, I know dating issues regarding N can be tough for PWN. I wonder if PWN ever look to other PWN for romance? It seems like there has gotta be two PWN out there who are perfect for each other, and who could be mutually understanding and supportive?

  198. The Dreamer on December 25, 2010 at 12:10 pm

    Actually, the list would've come in handy recently…guess I should've paid more attention in that session.

    My boss was asking if he should be worried about me falling asleep at work. Of course I don't have all the answers yet, I'm still waiting to see my sleep doctor (Jan 13) following my recent PSG/MSLT (Dec 2/3). But, it was complaining that it was starting to happen too frequently, and out of my control, that finally prompted my doctor to start me on this journey (of 2 years so far).

  199. Liet-Kynes on December 26, 2010 at 1:21 am

    I have been reading your blog for a while but until now I had never gone back and read these old posts from before I followed the blog. I'm really glad I did – this post is very moving. With your life and what you choose to do with it you are an example of facing adversity with determination and grace. I have narcolepsy without cataplexy, and life for me is difficult – I can't imagine dealing with cataplexy to boot. You show me how to strive to make my medical burden a positive force in my life. I hope you will keep sharing your story with us, because I, for one, will read. And I will benefit 🙂

  200. Gurney Halleck on December 26, 2010 at 1:30 am

    Great brief summaries!! I also like the insight that society generally perceives excessive daytime sleepiness as harmless or funny. When it happens to you, it is anything but funny.

  201. Anonymous on December 29, 2010 at 9:37 pm

    I have a 17 yr old with narcolepsy. I've seen him go through what you've described so many times. He always falls asleep on the school bus on the way home, but somehow wakes himself up. He usually travels with me, so I'm his navigator. I've seen him opporate in, what I call 'auto pilot", managing to coast his way to wherever he is going with eyes half closed.
    -Caring Mom

  202. Muad'dib on January 2, 2011 at 9:50 am

    Seems like almost everything in our society is a meritocracy – we value and promote those who are the best of the best. The downside of this is that often there is real value in doing and enjoying things that we may not be the best at. Thank you for pointing out that there are other benefits to many activities like running besides 'being the best' !!

  203. Jackie Wags on January 7, 2011 at 9:13 am

    You totally would have beat the pants off him! Just be honest Julie, you totally "gave " him that game! 🙂

  204. NarcoGirl on January 7, 2011 at 10:09 am

    I so feel your pain on this one-you put it very well when you said …"a slight buckling in my knees or my arms momentarily slackening". That's been my cataplexy experience-always would happen at the worst times, like when I would carry my babies to the car. Not a great time for one's knees to buckle. Thanks for all you do for the cause, Julie- blogging, traveling, advocating…you are appreciated.

  205. thomas.flygare on January 7, 2011 at 10:26 am

    Hooray for Ben!

  206. Anonymous on January 8, 2011 at 6:28 pm

    hey julie

    Having worked with you with tennis and squash, I certainly know how you play your racquet sports with great passion. Now you should relax and be calm and just play for the experience of being in the quiet moment, even with a ball flying about. so glad you are still trying to capture the moment with all your heart. thanks to Ben for his patience and support. Your old loving supporter and coach, Mom

  207. The Dreamer on January 13, 2011 at 12:28 pm

    I hate it when I have those nights/mornings. Swear that somebody had rung the doorbell or knocked, but its way too early and nobody was there.

    Almost as bad as the dreaming the sleep tech had come into my room while I was napping in my MSLT…to do unspeakable things to me. Yet, the result of my MSLT is normal sleep latency and no REM.

  208. tricia on January 14, 2011 at 11:20 am

    Remarkable just how real we believe it all is, totally relate-able.

  209. The Dreamer on January 19, 2011 at 12:47 pm

    Someday I need to sit down and redo my website….perhaps time to do it using something more than Notepad.

  210. Meatloaf on January 19, 2011 at 4:11 pm

    I already signed up for the mailing list 🙂 Looks great, Jules!! xoxo

  211. thomas.flygare on January 20, 2011 at 6:36 pm

    Cool website, Julie!!

  212. thomas.flygare on January 22, 2011 at 1:03 pm

    Everyone gets out of shape from time to time, even the greatest athletes — look at Big Papi. Your determination to get back in shape and your belief in its possibility are your two greatest assets in this struggle.

  213. thomas.flygare on February 5, 2011 at 1:52 pm

    Those are great CD's. Highly recommended.

  214. Anonymous on February 8, 2011 at 9:46 pm

    Thank you so much for your blog which I stumbled on this morning-all the way from perth in Australia. Still working my way through my diagnosis 6 months ago and this blog hit home more than anything else I have read. You are right-there is a relief in just knowing that all the things you just live with-the tidal wave sleepiness, the weight gain, the continual push to function-actually are all tied into one illness. Still learning-but thanks for sharing. Am going back to the link to donate to the Boston Marathon runners.
    Thanks again
    Catherine

  215. REM Runner on February 13, 2011 at 2:23 pm

    Catherine – Thank you so much for your message and for reading my blog all the way from Australia! Processing the diagnosis of narcolepsy can take some time. Please feel free to reach out to me if you ever have any questions you'd like to ask another person with narcolepsy.

    Also, thank you so much for supporting Wake Up Narcolepsy's 2011 Boston Marathon efforts to raise money and awareness for narcolepsy. These funds support cutting edge research done by top narcolepsy researchers at Stanford Univ. and Harvard Medical School. We hope to make a difference for the futures of those living with narcolepsy.

    All my best from Washington, DC – Julie (aka The REM Runner)

  216. Kim on February 16, 2011 at 11:20 am

    Wow, Julie. Thank your for eloquently explaining cataplexy. Unfortunately you had to have this experience, but my hope is that more people will understand the ugly side effects of this disorder! My next letter for the marathon talks about cataplexy and you have given me some great ideas! Thank you! Kim

  217. Jackie on February 16, 2011 at 1:20 pm

    Geeze Julie! Maybe you shouldnt be so funny! 🙂

  218. Rigoberto on February 16, 2011 at 5:27 pm

    I found this blog on Google. I know someone who recently got narcolepsy and I have been trying to understand it and understand what this cataplexy is. Thank you for this blog, its very informative as of about cataplexy in a persons life.

  219. Jerry on February 17, 2011 at 10:49 pm

    Rigoberto- There are some very good sources on the net describing the many manifestations of narcolepsy ad cataplexy. One I frequently review is at Stanford.edu.
    BTW, I was diagnosed with narcolepsy /hypersomnia in October 2009 at the age of 57- an examination of my medical history suggests I have had n since I was very young. The average time between onset and diagnosis is approximately 14 years. The prevalence in the population is about .05.

  220. Nancy U on February 24, 2011 at 10:44 am

    Just curious, has anyone tried controlled breathing exercises at the onset of cataplexy? Like meditative breathing? Maybe just a pause would do it? Please forgive my ignorance.

  221. The Dreamer on March 1, 2011 at 4:31 pm

    I had planned to do groceries on Sunday…its been a few weeks since I've done my weekly trip. Though I had left over delivery pizza from Friday that I was still working through.

    I had somehow failed to sleep to noon like I had done on Saturday…and the sleepiness was coming, having decided to take a one day break from my Provigil. But, I got ready to go and opened the front door….to see that it was raining.

    Nothing hard or anything, but the long lingering kind that had been going for a while and wasn't likely to stop soon.

    So, I didn't go out…I changed into something comfortable and curled up on my sofa…. I probably should've at least cleaned my mask…but lately I keep getting slammed with massive sleepiness a few hours after waking that its surprising what I do manage to do.

    Perhaps I'll get around to doing groceries next weekend, meanwhile…I think I order Chinese tonight.

  222. Saraiah on March 2, 2011 at 10:55 am

    Lovely!! For those of us living in "developed countries," it can be easy to forget, or never even know in the first place, how soothing and joyful being in the natural world can be.

    There are studies that show that looking out a window at even one tree leaves people feeling better and being more productive than if they look out at an urban landscape devoid of plant life. There are even studies out now that show that taking a walk in the woods before learning something new facilitates that learning, and walking in urban environments does the opposite. Amazing stuff for those of us conducting the majority of our lives inside buildings.

    And I won't even get started on our lack of extended exposure to bright light…

  223. Anonymous on March 2, 2011 at 3:10 pm

    I always love to run in the rain. There are less people on the trails, and I feel like I'm "extra tough" when I do it.

  224. Melissa on March 3, 2011 at 3:10 am

    As, always…you amaze and inspire me! What beautiful observations. Your post reminds me of the theme of 2 of my favorite poems–I'll send them to you! xoxo

  225. thomas.flygare on March 7, 2011 at 10:46 am

    Very thoughtful message, Julie!

  226. Nancy U on March 7, 2011 at 11:32 am

    Oh Julie what a great idea! Maybe you could add some footie pajamas too?

    Just make sure you don't get mistaken for a congresswoman or senator. Deep down we're all sure that they've all been sleepwalking for years, right?

  227. Anonymous on March 7, 2011 at 11:37 am

    Hi Sleepwalker,
    This is such a clever, creative, whimsical idea–educating others and having fun while doing it! You never cease to amaze me. I look forward to your blog about how it goes.
    Rebecca

  228. The Dreamer on March 7, 2011 at 2:16 pm

    Yeah…I think until last fall, I hadn't (knowingly) met someone with narcolepsy.

    It was also the first time I had seen anybody carrying a CPAP in an airport…

    But, I'm planning to just sleep entire weekend away.

  229. Melissa on March 10, 2011 at 2:37 pm

    Go Jules! I have a question about dreams that I've been meaning to ask you. Not that we need an excuse to talk…but this gives me a good excuse to call you. xoxo

  230. Jerry on March 13, 2011 at 5:47 am

    Terrific idea- I will be with you in spirit.

  231. Meatloaf on March 13, 2011 at 8:18 pm

    Jules, what a great event! I wish I could have been there to walk with you. I loved the video! Count me in for next year. Xoxo

  232. Carlyn on March 13, 2011 at 9:38 pm

    Love it Julie! So glad I could be there for the inaugural event!

  233. The Dreamer on March 14, 2011 at 9:48 am

    Hmmm, maybe I wish I had gone…. probably would've been better than being home this weekend…and working-ish. Perhaps I should plan to do Sleep Walk 2012, even though I might just be looking for an excuse to be out of town that weekend, so that I can catch some sleep….

    Though it would make see another part of DC that wasn't the hotel I stayed in last year….

  234. The Dreamer on March 14, 2011 at 1:57 pm

    So, how many kisses did you get?

  235. Anonymous on March 14, 2011 at 4:00 pm

    3/14/2011

    Great job Julie. It is too bad no one suggested a raffle/auction to pay for your expenses.Maybe I'll do it for 2012 if I am still around.

  236. NancyU on March 14, 2011 at 7:18 pm

    Maybe sell buttons and the t-shirts for next year?

    Try Cafepress.com. You can design shirts and people can purchase them and you get paid! Use the money for supporting your blog or to donate direct to narcolepsy research. I think that you can even embed the link to the shirt here on your blog.

  237. Phoebe on March 17, 2011 at 9:11 am

    I got 4 hours of sleep last and I live in MA…coincidence? That was rare though so don't you worry REMmy…I usually get 7.5-8 hours 🙂

  238. Robert M. Burnside on March 17, 2011 at 7:52 pm

    In numbers there is strength!

  239. Nancy U on March 21, 2011 at 3:13 pm

    Julie, the next time you're just looking for energy from "orange pill bottles" go for a dose of daffodils too. Out here in southern California we're in the middle of 3 days of rain. Dreary? Yep. But the spring wildflowers have had steady rains this year and the orange California poppies are beginning to bloom. Best medicine ever.

  240. Johnny U. on March 22, 2011 at 5:31 pm

    Very beautiful pictures. I have a sleep disorder and feel like a machine sometimes. It is good to be reminded that we are all complex creatures. My sleep problems are complex and the treatment needs to take that into account. Thank you for the blog

  241. The Dreamer on March 23, 2011 at 5:03 pm

    I'm still not really sure what sleepiness is or isn't, though I certainly feel that what I'm feeling is excessive. (and its a whole lot worse when I'm not taking my Provigil.)

    Though limiting my activities because of it, gives doctors reason to say it isn't sleepiness but that I'm crazy. But, it isn't the actual activity that is impacted by the sleepiness…its the fact that I want to be able to safely make it home afterwards.

    Late one evening coming home from an activity…I came up to an intersection that has an audible alert added audible alerts. The light changed to indicate traffic to go from right to left across the intersection…but I heard the sound so I went forward. Stopped just before the middle and the traffic flow….that didn't seem to care that I was about to cut through it…while slowing inching forward I kept wondering why there was so much more traffic going across in front of me….

    My parents never thought of me as having a sleeping problem, I could sleep through anything…which was when they took us on car trips. Not so good when I'm the one behind the wheel, and I'm doing 120km/hr….

    I think the concussion from my big metal coffee mug was the main extent of my injury, though the small town x-ray of my neck wasn't too clear….so that required transfers and other doctors to look me over around C4/C5. Though I never met any at any time then (or any subsequent ER visits…)

    sleep doc also says I'm crazy for saying I sometimes have trouble falling asleep or staying asleep, because I'm wearing my cpap mask while I'm awake trying to fall asleep or stay asleep. cpap compliance means I'm not having insomnia…. just as a normal MSLT means my cataplexy isn't cataplexy.

    Maybe the neurologist I'm seeing on Monday will tell me what's what.

  242. Nancy U on March 23, 2011 at 6:08 pm

    I don't think that anyone has defined sleep well. We're all cycling daily through a continuum between 'totally awake' and 'dead to the world'. Our responsibility is finding where the line is for 'impairment' and trying to notice the symptom right before that. For me, it is the first time my eyes go 'fuzzy'. After that I start losing concentration. Best to quit when the eyes tell me to.

  243. Main Man on March 23, 2011 at 10:54 pm

    Great post and intensely awesome insights. I think for me, the first sign of sleepiness is lack of focus/mental fuzziness. Like you, I pushed through years of berating myself for my lack of will power (and downright laziness), only to realize that I was battling sleepiness. Your entire post reminds me how excited I was at the 2010 Narcolepsy Network conference when Dr. Michael Twery, NIH Director of the National Center on Sleep Disorders Research, mentioned that they were developing a national health directive on sleep.

  244. Charlie on March 25, 2011 at 9:26 am

    Fleeting thoughts
    Anxious feelings
    Hope I don’t fall asleep

    Feelings returning
    Head clearing
    I won’t fall asleep

    Everything slowing
    Hearts racing
    Hope I don’t fall asleep

    I can fight this
    Healthy body
    I won’t fall asleep

    Time mucky
    Words slinging
    Hope I don’t fall asleep

    Pride rising
    I’m winning
    I won’t fall asleep

    Why me
    Why is this happening
    Hope I don’t fall asleep

    It’s not so bad
    How long will it last
    I won’t fall asleep

    Eyes flickering
    Legs shaking
    Hope I don’t fall asleep

    Bighting lip
    Pinching arm
    I won’t fall asleep

    Who’s watching
    Anybody noticing
    Hope I don’t fall asleep

    Keep on fighting
    Just a little longer
    I won’t fall asleep

    Eyes closing
    Darkness coming
    I’m falling asleep

  245. Hopefully Awake on March 26, 2011 at 11:21 pm

    Hi Julie,

    Before being diagnosed, I really never paid attention to any signs of falling asleep. All I can remember is that whenever I was driving on the highway, everything would go black as I was driving and I would hear a voice yelling “WAKE UP, WAKE UP.” It was like a guardian angel was watching over me because there was no one in the car.

    Now I know when my attacks are coming because my thinking starts to get foggy and it feels like a cloud is building up in front of me and when this happens now, all I keep saying is, “Not Now, Not Now.” All of a sudden I will be staring off into space and fight with my brain to stay awake, if someone is around me they sometimes bring me back by asking me if I am okay. This usually happens between the hours of 2 to 5 p.m. or anytime after 7 p.m.

    I have also found that stress causes an increased likelihood that I will be extremely tired throughout the entire day even though I have taken my medicine. My stress has been elevated greatly the past couple of months and it is getting very difficult to deal with symptoms. I feel like I am slipping into depression, which is an unknown territory for me.

    Sincerely,

    Hopefully Awake

  246. Nancy U on March 28, 2011 at 10:56 am

    Isn't it wonderful to know that people will reach out and ask? And when they do they're usually gracious and accepting. Thanks for writing this Gail.

  247. Sasha on March 28, 2011 at 3:43 pm

    Julie-
    Great post, especially the very last paragraph. Narcolepsy is truly unique for each individual who suffers from this neurological condition.
    -Sasha

  248. thomas.flygare on March 28, 2011 at 4:17 pm

    Even though narcolepsy is not the issue before the Supreme Court, maybe publicity about the case will help raise public awareness of narcolepsy. If the Supreme Court allows the case to go forward, I believe Cheryl Perich has a very strong case of discrimination and retaliation.

  249. thomas.flygare on March 28, 2011 at 6:01 pm

    Gail: Thanks for adding this interesing piece to Julie's blog.

  250. erin on March 28, 2011 at 6:18 pm

    Fascinating post! I did a google search for "ministerial exception" and found that many people have been waiting for a case like this to come to SCOTUS for a long time. Many feel that religious institutions use the ministerial exception clause to place themselves above the law, when the clause is there only to protect the church's freedom of religion and nothing more.

    Personally, I am really excited to see this case and the outcome!

  251. Angela on March 28, 2011 at 6:47 pm

    As a narcoleptic I lost my job as a youth pastor because a woman in the congregation wanted my job. She began to tell people I was not on meds & was a danger to their kids. I don't drive, I was never alone w/the kids as a precaution just so people couldn't say anything. I ended up losing that job due to all her gossip. I couldn't do a thing about it either. 🙁 I get tired of churches being able to do anything they want. Just because they don't like to face people God doesn't heal doesn't mean they can take my right to do ministry away by their ignorant prejudice!

  252. queenofsleep on March 29, 2011 at 5:34 am

    I really like yours and Julie's blog post on the walk! I wish I could have joined you, perhaps another year. Next weekend I am going to Sheffield to attend Narcolepsy UK's spring conference. All of Saturday will be crammed with talks, workshops and socialising with old and new friends and relatives/friends with and without narcolepsy. I wish I could have been wearing your T-Shirt!

  253. NarcoGirl on March 29, 2011 at 9:44 am

    Hey Julie-you are awesome for posting this. Would you mind if I reposted this on my blog?

    Thanks!
    Narcogirl

  254. Gail on March 29, 2011 at 9:48 am

    Very informative posting. Thank you for taking the time to separate the issues and clarify the suit for lay people. It is fascinating to learn about the church's exemption from ADA. I would have thought they would be the last to discriminate not using their exemption under the first amendment. Please keep us informed as this case progresses.

  255. Saraiah on March 29, 2011 at 10:28 am

    I understand that this isn't the contested issue in the court case, but the decision to dismiss Cheryl Perich before waiting to see what her functioning would be like after treatment is so frustrating, and my hunch is that it happens frequently. Like Sasha, I greatly appreciate your point that every person who has narcolepsy has a unique set of symptoms and a unique response to treatment, and so each case should be evaluated individually.

    Though there are many people who respond to my narcolepsy diagnosis thoughtfully, others seem to land on either end of a continuum of responses. Some people disbelieve that the diagnosis is correct and that my behavior has anything to do with a medical illness. And others assume that I cannot be trusted to do much of anything (or trusted to know and take responsibility for what I am able and not able to do reliably), based upon a vague understanding of what narcolepsy might be.

    Thanks, Julie, for your incredible work to raise public awareness of the disease – and of what individual people with narcolepsy can do in spite of our symptoms!!

  256. thomas.flygare on March 29, 2011 at 12:55 pm

    I am worried about the outcome of this case. The majority on this Court almost always supports the corporation or the institution over the rights of individuals. The vast majority of Justices are Roman Catholic, and while there is nothing wrong with that, it may mean they are predisposed to expand the religion exemption.

    Cheryl Perich will now have to wait about 18 months before finding out if her case can even go to trial. Considering that she filed her complaint with the EEOC six years ago, she has already waited a long time for justice.

  257. The Dreamer on March 30, 2011 at 12:11 pm

    I wish saying something like "It is a sleep disorder of the brain that changes your sleep patterns. A person with Narcolepsy gets really tired after about 4 hours like they’ve been awake for 48 hours…." was enough to finally find out whether or not I have Narcolepsy….but so far no such luck.

    So, maybe the getting up earlier and earlier in attempts to get into work at a better time…is actually the wrong approach, perhaps I need to simplify my mornings so I can get into the office before the 3-4 hour mark after I wake up. Though the period of extreme sleepiness isn't as bad if I remember to take my Provigil as soon as possible after waking….

    If only there was a better way to remember to take my 2pm dose….

  258. Nancy U on March 30, 2011 at 12:11 pm

    Cases like this just make me throw up my hands and give thanks that I'm not a Supreme Court justice.

    My sympathies do lie with Cheryl. But as unfair as her firing was, deciding against the school would be another blow against the ability of those in a private institution to make decisions about what is best for the organization.

    Weakening the rights of private institutions is dangerous. Where there is only one source of power, then horrible things like the Holocaust, Stalin's starvation and purge of 30 million, and the Killing Fields of Cambodia occur.

    And to say that Americans are 'special' and that we'd never do things like that is arrogant to the extreme.

    Best not to create a situation where there is no significant opposition to those in power who are looking for convenient, unpopular groups to scapegoat.

    I'm not saying that deciding in Cheryl's favor will lead to an American Holocaust. That's ridiculous.

    What I am pointing out is that there's many implications to a case like this. And some of them could lead to a tipping point towards a future that nobody wants.

    So glad I'm not on SCOTUS.

  259. Jaalsey B on April 1, 2011 at 11:33 pm

    Wow! holding back the tears here. What an inspiring story. I trained and ran a 5k a few years back and that's the last I ever ran. I finished the race, but grew tired of fighting the cataplexy, so I just quit training :/ booooo

  260. thomas.flygare on April 2, 2011 at 2:13 pm

    Beautiful photos, Julie. And a nice message in your blog.

  261. Tricia on April 2, 2011 at 4:51 pm

    The beauty of these photos translates very well. Thank you for sharing.

  262. Nancy U on April 4, 2011 at 12:33 pm

    Spectacular shot of the Washington Monument across the tidal basin. And a good story about international cooperation and kindness. Peace through gardening diplomacy…I wish that it could spread like plant clippings.

  263. Nightboss on April 11, 2011 at 10:22 am

    People fear most that which they don't understand. As a lifelong narcoleptic who has served my country, worked hard for a degree, and worked in law enforcement for 17 years, I know that it is possible to "soldier on" even when one doesn't know why or where the fog and exhaustion come from. It wasn't until I changed jobs and sat at a desk in a cubicle for eight hours a day at a software provider that narcolepsy took me down. Unlike Cheryl's case, my body is non-responsive to every medication my family physician and three neurologists have prescribed for me. Once I invoked my LTD insurance, I was terminated from my employment. At my age, I doubt I will ever work, or drive, again.
    As an evangelical Christian, I have a hard time understanding why Cheryl was not accommodated. If Christians don't care for their own, who will they care for?

  264. Patty Tucker on April 20, 2011 at 9:47 pm

    Even more importantly, these people of science are full of heart!! Nice to see pix of my friends at Stanford.

    http://www.sleeprestlive.com
    http://www.sleepofchampions.com

  265. Juliette on April 21, 2011 at 5:57 pm

    Julie it was a pleasure to meet you during your visit! Thanks so much for your hard work- we need all the help we can get to make these advances. We're entering a really exciting phase of narcolepsy research!

  266. Gail on April 21, 2011 at 7:12 pm

    Great to read about the setting of new research and scientists with real inspiration and dedication to finding solutions to chronic health problems. Seeing their faces makes them come alive in our memories. Your dedication to sharing your journey makes us all humble and grateful.
    Thanks!
    Gail

  267. Kerry on April 21, 2011 at 8:08 pm

    Thank you so much for coming to visit us and working so hard to raise awareness & funding!

  268. thomas.flygare on April 22, 2011 at 1:04 pm

    This is a wonderful tribute to the people who work so hard behind the scenes to advance narcolepsy research. Dr. Mignot and his staff give persons with narcolepsy and their families hope for a brighter future.

  269. Robert Burnside on April 24, 2011 at 12:17 pm

    Great to see how committed Dr. Mignot and his staff are to researching narcolepsy – thanks Julie for visiting and writing about their work!

  270. Scott on April 24, 2011 at 3:35 pm

    I know that Narcolepsy research is woefully underfunded, and I understand that increasing research dollars for Narcolepsy is no easy task. I am so thankful to REMrunner and people like her for working to increase funding. Something I don't often think about is that even if there were unlimited funds available for Narcolepsy research, there has to be dedicated, smart, interested scientists and researchers who are willing to do the research and spend their lives working for the betterment of those with Narcolepsy. I am so thankful for Dr. Mignot and everyone at the Stanford Center for Narcolepsy – I'm sorry I took you guys for granted! Thank you for your dedication and excellence, and for being willing to spend your valuable time on Narcolepsy research. It makes a real difference for all of us with Narcolepsy, and I am reminded today how grateful I am for you.

  271. Melissa on April 26, 2011 at 4:31 pm

    I really enjoyed reading this post. I especially loved the connection you made at the end between science and art. You should be so proud of the hard work you dedicate to raising awareness and funds for Narcolepsy research…and for your ability to chronicle your experiences with such beautiful writing!

  272. Robert M. Burnside on May 1, 2011 at 9:14 am

    What an excellent news video! She really understands narcolepsy – inspirational to see this kind of determination to raise awareness about narcolepsy.

  273. livingwithn24 on May 6, 2011 at 7:40 pm

    It was great to see you at the meeting. I was very pleased at the genuine desire of the researchers to help advance understanding of all sleep disorders. This plan will be a big step in that direction.

  274. Eric Johnson on May 9, 2011 at 5:22 pm

    Thank you so much for going to this meeting and reporting back to those of us not in the Washington DC area. This sounds like such a positive step in the right direction for sleep and narcolepsy research!

  275. livingwithn24 on May 11, 2011 at 9:14 am

    Wow. What a striking way of conveying the impact of that terrible disease. Even to see the photos is moving; I can only imagine what it was like to see it in person. I hope they reach their goal of more research and, someday, a cure.

    LivingiwthN24 at http://delayed2sleep.wordpress.com

  276. tricia on May 11, 2011 at 11:13 am

    MIGHTY POWERFUL, thank you for sharing>

  277. Anonymous on May 25, 2011 at 12:57 am

    I'm glad I landed here! At this very moment, I sit with much the same lament after being sidelined and on crutches for the past month. clothes are getting tighter….sugar consumption is on the rise, and I'm siting more that ever before…since I can't do much on my feet. But, I will use this moment of commradery as a motivation to find other ways to get my body back in shape. Thanks for your honesty….I don't feel so bad for feeling a bit large in my clothes this spring!

    Ann in St.L.

  278. Bentley on May 25, 2011 at 11:51 am

    Nice post. I appreciate the debunking and also the explanations of what's actually happening when someone is experiencing catapelxy.

    Collapsing generally has, strangely, often been attached to being a humorous moment (eg fainting, the vulcan death grip, etc.), and as a symptom of narcolpsy it has been drawn on for comic relief, which is odd and troubling. I guess this play captures that stereotype.

    I think your conclusion though is well balanced: fairytales are still just fairytales. While they may propagate certain stereotype, it is just a play and can be enjoyed for what it is.

  279. Melissa on May 25, 2011 at 2:37 pm

    Interesting concept for a musical…but troubling that it may in fact reinforce incorrect perceptions about narcolepsy. Will you report back to your readers if you are able to connect with any of the actors? Or maybe you could contact the writer(s)? It would be interesting to know if any of them have personal connections to people with sleep disorders.

  280. Gail on May 25, 2011 at 6:56 pm

    I would like to see the play with you and write a review together we can submit to the newspapers and if necessary Pickett the show 's portrayal of narcolepsy as something funny as they did in a Mad Mad world with Mr. Bean.

  281. Scott on May 28, 2011 at 1:10 am

    Very interesting to hear your view on it. I appreciate that your opinion is nuanced and not solely a condemnation of what sounds like a pretty stereotypical portrayal of Narcolepsy.

  282. Made by Michelle on May 31, 2011 at 1:58 pm

    Hi, new follower! Someone linked to your blog in a FB support group I'm in (I have narcolepsy too).

    I think Bentley is right, that collapsing or falling down is often used as comic relief. It's a shame that it sounds like they're using cataplexy in this way when they could be educating people about how serious it is. I'll be interested to read your thoughts on the play if you see it.

    Michelle

    http://madebymichelle.etsy.com
    http://handmadebymichelle.blogspot.com

  283. Scott on June 5, 2011 at 2:57 am

    This post is funny! I've tried yoga before, but never done it two days in a row, let alone 21 days in a row. I'm gonna try it again, thanks for the Inspiration! 🙂

  284. Gail on June 5, 2011 at 10:44 pm

    You are my inspiration. Tomorrow morning I swim.
    Gail

  285. Jodi Evans on June 11, 2011 at 12:29 am

    I am so glad you are posting this blog. i was diagnosed a year and a half ago. I have 20 to 30 episodes without treatment. Now I am at 2-3 per day. I ran a marathon before I was diagnosed, but not since. This was very inspiring.
    Like you , I am trying to find positive and funny things in life and this disease. Check out my blog at http://www.keepfallingup.blogspot.com
    I would love to talk to you!

  286. Saraiah on June 16, 2011 at 11:11 pm

    Unless my memory is playing tricks on me (again), I believe I read somewhere that when the symptoms of "secondary narcolepsy" are caused by brain injury, they can sometimes resolve over time if the brain heals itself sufficiently. As you mentioned, that's not at all possible with autoimmune-caused hypocretin-deficient "primary narcolepsy."
    Terminology can get confusing, since there are actually a number of different clinical diagnoses which contain the word "narcolepsy," all with similar symptoms, but with different (and sometimes unknown) etiologies.

  287. REM Runner on June 17, 2011 at 2:28 pm

    Thank you, Saraiah, for your comment. You've raised a great point about the possibility that Melanie may have had Secondary Narcolepsy. I hadn't thought of this. Thanks for this important contribution to the discussion. I hope to know more soon to share!

  288. Gail on June 19, 2011 at 2:57 pm

    Amazing and moving dance performance. I rarely watch the show but you have peaked my interest. I love the music chosen for the modern ballet dance. Thank you for sharing your diverse interests with your friend's and blog fans!

  289. Gail on June 22, 2011 at 9:48 am

    Congratulations Julie on successfully completing the 21 day challenge! You are an inspiration to me and others. Even without narcolepsy I cannot stay dedicated to exercising every day. Thanks for sharing your adventure.

  290. Melissa on June 22, 2011 at 2:05 pm

    Love your opening observation! Although it would be great to take a "yoga pill," your achievements will be so much more rewarding because of the challenges you face!

  291. Melissa on June 22, 2011 at 2:11 pm

    Thanks for the practical advice! I think your description about yoga looking a slow form of ballet is really lovely. Both are so graceful and look so easy…but tremendous strength is essential to make all those elegant movements possible!

  292. Melissa on June 22, 2011 at 2:33 pm

    You are right–yoga does help us understand that "perfect is not the point." It's such an important lesson that applies to so many other situations in life! Even the most experienced yogis can still improve their practice…so there really is no perfection in yoga. 🙂

  293. Melissa on June 22, 2011 at 2:42 pm

    Yay! Congrats, Julie! I'm so proud of you! Your dedication is very admirable. Thank you for sharing your experiences with us. You have inspired me in so many ways.

  294. Travis Perkins on June 24, 2011 at 11:33 pm

    I enjoyed reading your blog, you see I have narcolepsy too. Provigil did not work for me. Neither did Nuvigil. You may like to read an article I wrote at http://narcolepsyliving.blogspot.com/

  295. Maggie B on June 29, 2011 at 11:50 am

    Hmmm, fixating on a post-yoga fro-yo? I can relate to that…

    Congratulations Julie. This is great stuff!

  296. Anonymous on July 3, 2011 at 7:45 pm

    Guess its still a question of whether it's a sleeping pill that get's us the right kind of sleep….

    First PSG noted the lack of the deeper, more restful phases of sleep, most likely due to OSA… And, confirmed it with an AHI of 34.1. Conclusion, OSA and get a CPAP.

    Two years later, second PSG noted the same lack of the deeper,more restful phases of sleep, most likely due to OSA….but recorded an AHI of 0.0…. Conclusion, OSA and continue with CPAP.

    Was on 1mg of Lunesta.

    Though did eventually get to hear the phrase idiopathic hypersomnia…. But, no real change in sleep aid (went to 2mg and now 3mg)….though the Provigil that had stopped working was replaced with Ritalin….which doesn't work enough.

    Though boss seems okay that I'm in for lunch and then too sleepy to risk going home so I stay late, and then nap at 10pm so I can be night owl for 3-4 hours. Though the tone of my emails after 4pm is kind of a problem.

    Silly PSG also says to avoid alcohol at bedtime, didn't matter that I told them I hadn't had a drink in almost 15.5 years (now over 16 years).

    Meanwhile, the other colleague that had the pleasure of experiencing most of the same tests I've gone through ahead of me was terminated a couple weeks ago. Which I'm told was due to performance reviews…. and not being able to figure out what is wrong and getting a treatment that works.

  297. Robert M. Burnside on July 4, 2011 at 9:22 am

    Julie, thanks for keeping up with the developments in the pharma industry, let's hope they eventually find a cure!
    Robert

  298. sbeaulieu on July 4, 2011 at 2:22 pm

    so interesting to read about! Thanks for posting it.
    I would love to be able to one day sleep the whole night through! Some nights i just have super bad insomnia, which ends up being contradicting to my narcolepsy; forcing me to have to nap more the next day!
    I hope one day they find something that cures at least one of the two! I could manage better with just one sleep disorder! =p

  299. Scott on July 20, 2011 at 9:29 am

    I appreciate the honesty in this post about something that we all struggle with to some extent – negativity and self doubt. Sometimes little reminders to fight these negative interferences are very helpful. Thank you!

  300. Gail on July 20, 2011 at 6:10 pm

    I tried it. It is not easy but then I tried just Karate chops in the air and it felt good to chop away at the negative thoughts and energy. It reminded me of a PTSS exercise to close your eyes and picture a flowing river in front of you. Start throwing all the bad memories and thoughts in the flowing river and say goodbye to them. I did it to soothing music. The therapist told me to tell her when I was finished. Finally she interrupted me saying,"Aren't you finished yet?"
    It is a very good exercise to try when bombarded by negative memories.
    Thank you for sharing!

  301. Unknown on July 26, 2011 at 10:43 am

    I admire your hard work and courageousness for sharing your story of narcolepsy through your blog. I think that you would agree with my feeling that, as part of the self-discovery process, it can be useful to share your personalized story of narcolepsy, or other mental health issues with others. If you are interested in sharing your story with me, I am assisting with a book that will be published around September 2011 on first person accounts of people with a range of mental health issues. This is another opportunity to continue to share your story and touch the lives of others. If you would like more information on this opportunity please let me know and I can answer any questions you have. As part of contributing to this project, we would also be able to direct readers to your blog for more information. My email is aer0930@gmail.com…thanks!

  302. SemperFiVet on July 28, 2011 at 10:29 pm

    I believe we need an orexin antagonist like what GSK was recently developing, this one unfortunately sounds like N. in a pill form! I was diagnosed while in the military in my early 20's, I sure hope and pray for the day when we can control N. like a diabetic does via insulin!

  303. Gail on August 3, 2011 at 10:30 am

    Fascinating! I will try writing down ideas before sleeping.

  304. Narcolepsy News on Twitter on August 4, 2011 at 11:40 am

    Thank you for sharing this story.

    Let's hope it inspires other people to keep asking and never settle for more unanswered questions and fague diagnosis

    Let's salute the members of this community in the kindness they showed!

  305. Anonymous on August 4, 2011 at 2:43 pm

    You know, Julie, I do come from a great Christian community! Halifax Academy and the surrounding area is filled with loving and self-sacrificing people. I will NEVER be able to thank them enough for their understanding and generosity! All of you who supported us in even the tiniest way should feel a sense of pride, as you have LITERALLY helped to improve a child's quality of life. This illness is incurable, but treatable with the proper care. That is exactly what was made possible by the good people of the Roanoke Valley.
    As for Mali, Dr. Minot, and the staff at the Stanford Center for Narcolepsy, Y'all were a God send for me, my family and all who hold Haven dear.
    Julie, thanks so much for all you do and have done to help others understand. What a kind spirit you are!
    I love you each and every one!
    And, above all, thanks to the Lord! I trust the He has a plan in all of this and I do believe I have already witnessed some of the fruits of it. Thank You for allowing me the ability to trust and not be bitter.
    Eternally Grateful,
    Diantha

  306. Miss Diagnosis on August 4, 2011 at 4:13 pm

    Wow! What an inspiring story, Julie! That so many people came together even to help find the diagnosis and then to raise money so treatment would be possible, is amazing.

    Diantha, I had childhood narcolepsy but it was not diagnosed until 2008 when I was 31, so you are truly blessed to find some answers. And blessed by a strong community. I will pray Haven continues to improve and that all financial needs for her care will be met. Take care!

  307. Christine Sama on August 4, 2011 at 4:52 pm

    What an incredible story about a courageous family and the power of love. These are the things I wish we read about in the newspaper. Thank you Julie for sharing so beautifully (as always).

    Love,
    Christine

  308. Saraiah on August 4, 2011 at 5:07 pm

    Diantha, if you'd ever like to bring your lovely girls up to Washington D.C. for the weekend to meet a bunch of grown-ups with narcolepsy, we'd love to host you all! Next to Mali's and Dr. Mignot's care, there's nothing like meeting other people who intuitively understand one's life. The Narcolepsy & Hypersomnia Support Group of the Greater Washington D.C. Area meets once a month, and I know Julie's got all the details.

    p.s. Gorgeous article, as usual, Julie!!

  309. Anonymous on August 4, 2011 at 9:09 pm

    Thanks for the article, Julie. It is wonderful that Haven was diagnosed relatively quickly, has such tremendous community support, and has been able to travel to Stanford to meet Dr. Mignot and receive treatment. As we have discussed, I am always dismayed by the inability of so many physicians to diagnose narcolepsy and cataplexy. Keep spreading the word!!
    Mark Patterson

  310. Anonymous on August 4, 2011 at 9:35 pm

    Diantha, thank you for letting Julie share your story. Your story brings back memories of our family getting my son diagnosed with narcolepsy, also at age 10. I am glad you pushed the physicians and researched online until your daughter received the correct diagnosis – we had to do the same. MG, Co-Founder, Wake Up Narcolepsy

  311. Anonymous on August 5, 2011 at 12:50 am

    Hi Julie: Excellent writing. You make such heart-wrenching and complicated matters accessible for populations that might not otherwise fully be able to grasp the gravity of the subject matter. As ever, your talent for making the complex into the consumable is outstanding. Best, Nick

  312. Scott on August 5, 2011 at 1:51 am

    Wow. First off, I can't agree more with the previous commenter about your writing Julie – you bring serious, often painful issues to focus in a way that both conveys real hardship and pain but that at the same time reveals people's strength and resilience against adversity. When I read stories like this, I am moved to tears, but am also encouraged.

    Thank you to the people of Roanoke Valley! And thank you to Diantha and Haven for being willing to share their story. It is really inspiring to hear about a community rallying around and supporting one of it's members with Narcolepsy. To everyone who helped this family in need, I salute you.

  313. Marcia Coy on August 5, 2011 at 9:09 am

    Everytime this blog post is read, and everytime this beautiful girls story is told, someone somewhere will have a light go on, in a world where most of us traveled through the dark. Thank you so much Diantha and Haven for sharing this part of your lives with us. Your story of love hope and community is an inspiration to everyone.

    Julie, Beautifully written, Thank you!

    ~ Marcia Coy

  314. Paula Barlowe on August 5, 2011 at 9:16 am

    You've done a great job on this Julie/Diantha, and with the help and support of the community for your daughter, y'all have came a long way fast.~ I've lived, and at times thought I was gonna die with this disease that I have suffered with for the past 14yrs. As you and others in this area have learned how complex this disorder can be.~ I'm thankful that y'all have that support too.~As you must know 14yrs ago when the symptoms first hit me strong, there was nobody on this side of the country that had a clue about what I was going through. I went to doctor after doctor, and the only thing they could come up with was I was over stressed. Well at that point, over stressed was an under statement, I knew stress could do a lot of different things to a person and their body, but could not imagine how it could make me drop everything I tried to hold, and fall to the floor with the worst feeling I've ever felt on the inside of me imaginable. With doctor after doctor, and drug after drug, I couldn't see the light at the end of the tunnel.~ Finally a show came on Dateline, and just by chance a niece of mine saw that show that night, called me up to tell me she had saw a show of people with the same symptoms I was going through. My next visit to psychologist I had ended up, I asked him had he ever heard of this. He told me he had, but knew nothing about it, so the journey had just began. He sent me to Duke where eventually I was in a study for the new drug for this, Xyrem. From this point on there is a book I could just about write about different things a person with narcolepsy/ cataplexy has to go through. Some funny, and some not so funny, but scary especially for the ones in the presence on me when a cataplexy attack occurred.~~ It saddens me to see anyone have to go through this, and especially a child. If there is anything that I can help y'all with, please don't hesitate to call or come by and I'll do what I can to help in any kind of way~~

  315. Tricia Higgins on August 5, 2011 at 10:17 am

    Tears are streaming down my face, endless salty tears. It is not because I cannot relate to this post, but it is because I can relate so profoundly. I feel like I already know you Haven. It has stirred up a flood of emotions in me. I was very much the same child as you are with similar experiences. My symptoms began as a child, I was called clumsy. I am older now and it has been the last 11 years of my life that I received a diagnosis of narcolepsy with cataplexy. So I applaud you and your story and my hope is that many people read this post. What a brave story you share. I hope to meet you in the future.

  316. Anonymous on August 5, 2011 at 2:07 pm

    Thank you Julie for telling this story.

    Thank you Diantha for letting it be told.

    I am a student at Halifax Academy and Diantha has been my teacher for the past two years. She has always been one of my favorite teachers, she is fun, caring, and has a great personality. I dont know why things happen to great people but I know God has his own reason. I've learnt everything does happen for a reason and all we can do sometimes is pray and hope for the best. I love you Diantha, Haven and Seanna. Yall are in my family's prayers! See you at school.
    Love,
    Megan

  317. Anonymous on August 5, 2011 at 7:22 pm

    Julie, as you know, I have had narcolepsy with cataplexy since I was a child (although I was not diagnosed until I was in my 20s) and I'm so sad to hear that the medical community is still so terribly ill-informed about narcolepsy. Why don't doctors test for sleep disorders while they're busy testing for every other possible medical condition?

    That said, this story truly demonstrates the power of a loving, persistant family and a strong, supportive community. Having narcolepsy and cataplexy as a child certainly comes with its challenges, and if it would help Haven and her family to know someone who also had narcolepsy and cataplexy as a child, I'd be happy to connect with them.

    – Victoria

  318. Scott on August 5, 2011 at 10:45 pm

    I enjoyed this Post, it is funny!!!! I would say that I can't relate to eating for 10 at night, but I'd be lying. On the body temperature scale, I'm traditionally a "too hot" person, so I've worked on strategies for staying cool for awhile. I'll share a recent one – I highly recommend that everyone with a car get a reflective sunshade thingamajig for the front windshield. You just pop that baby on before leaving your car in the sun on a hot day, and when you return to your car it is just Really Hot, as opposed to OMG THIS IS HEATMAGGEDDON I CAN'T STAND IT hot. They seriously work and cost like ten or fifteen bucks at your friendly local auto parts store. The package on the one I bought claims it can cool your car interior by 40 degrees. Never tested it, but it sure feels better. Overheated people of the world, UNITE!!!

  319. sbeaulieu on August 7, 2011 at 11:05 am

    Great Story, glad to see that their are people out there more than willing to help out and more than willing to understand.
    Thanks for posting this Julie, and thank you Diantha for sharing your story.
    I was diagnosed at age 14, and had it not been for my mom's determination to get me a proper diagnosis i would have been declared "an average tired teenager". I am happy to see your family got a lot of support to help a young kid and to get the proper diagnosis/treatment!
    Good luck with it all!! =)

  320. Anonymous on August 11, 2011 at 3:14 pm

    She said "Marietta Georgia" not " married in Georgia".

  321. Madcap MissAdventurer on August 12, 2011 at 2:10 pm

    I’m sitting here at work reading narco blogs during lunch as is my usual way of passing the hour…. Have been following your blog for about 2 months now and am slowly making my way through your archives. Today I thought I’d check out what was going on with you in the current day and leave the archives for another time….

    Well I’m sitting here crying in my office, with mascara runnin’ down my face and absolutely not caring how it may look to those passing by my glass fronted office…..This post of yours gives me hope for generations to come that may end up having this disease. Maybe, just maybe, through the talented writing of people like you and some publicized efforts at awareness these future generations might have a smoother road to travel than you and I did.

    You see, I have narcolepsy and my 17 year old son was diagnosed with it in May of 2010. Teachers, ex-husband, friends, and family looked at me like I’d lost my mind when I told them that the social, educational, and medical issues he was experiencing were from Narcolepsy. The doctor’s joined in by telling me that Narcolepsy wasn’t hereditary and that we needed to explore other options (translating that I couldn’t get the doctor to order a sleep study so I was looking at ways to pay for it out of pocket).

    I saved up enough money and took my son to be tested and what do you know? His mother knew what she was talking about. My son was diagnosed with Narcolepsy without Cataplexy (thank goodness for small miracles).

    After diagnosis, my son and I spent several hours with his teachers and guidance counsellor teaching them what Narcolepsy was and what signs to look for in their students. My heart went out to these underpaid and overworked people that already have so many responsibilities. Here we were adding yet another item for them to be on the alert for. Narcolepsy now joined the list that boasts life altering problems such as ADD, ADHD, Dyslexia, Anorexia, Depression, Child Abuse, Drug Abuse, etc, etc.

    My son and I forgave the teachers, doctors, friends, and family for thinking I’d lost my mind and for thinking that he was lazy. We realized that the true culprit in all of the drama was the lack of information. The entire event showed us that education truly is key and the more people that are educated on Narcolepsy the more awareness and diagnosis there will be, this in turn will help to fund more research, and hopefully lead to a cure.

    Thank you for being public about your trials and tribulations along with your successes. Adding stories like this to your blog adds yet another dimension to your already amazing ability to communicate this complicated and misunderstood disease.

    Thank you for all you do.

  322. REM Runner on August 13, 2011 at 9:24 am

    Thank you, reader, for this comment clarifying where she's from. I will change this in my post. Did anyone understand the bit where (I believe) she said she wore a helmet because she was narcoleptic?

  323. REM Runner on August 13, 2011 at 9:34 am

    Thank you all so much for your comments. It means the world to me that you enjoyed and related to my writing and Haven's story.

    I will do everything I can to raise awareness. Please pass the article's link to others to spread the word.

    Sending wakefulness from DC, Julie a.k.a. "The REM Runner"

  324. Scott on August 14, 2011 at 10:51 am

    I just saw that Ms. Moore won the competition. Congrats to her! A quick googling didn't reveal any more news or interviews of her discussing Narcolepsy. I wish a reporter would ask her about it!

  325. Scott on August 26, 2011 at 11:51 am

    Wow, I found this post very moving. I have narcolepsy without cataplexy, and have wondered what the experience of cataplexy feels like. This is a very elegant explanation, and something about using the earthquake as a metaphor is touching and sublime. Thank you.

  326. Anonymous on August 31, 2011 at 6:58 pm

    Julie, I had no idea you get "the shakes" like me. My doctor thinks I'm a candidate for falling without the medicine. Got bumped to a higher dose after a recent knee dip. I can't imagine what it must feel like to fall. I'm hoping things don't progress since there really isn't much else that can be done at this point. I've stopped driving on days that my medicine doesn't work like clockwork. You are very courageous for putting your narcolepsy/cataplexy out there with your full name, Julie. Posting here is much more scary than emails. I keep referring people to your blog. The last post about the flu was eye opening for me and my family.
    Angie

  327. Anonymous on August 31, 2011 at 7:18 pm

    Reading this post reminded me that my senior year of highschool was when I first started yawning at weird times like just before an orchestra performance. I was so excited about performing and couldn't figure out why I was yawning. Is it some weird quirk of mine that I yawn when I'm excited about something? I kept this in the back of my head and found myself yawning on a date, and I liked the guy! He asked about it and I told him that I have this weird quirk…looking back, a lot of guys asked me that and I always just told them it was my weird quirk! Every time I'd ask myself what I was excited about/looking forward to and every time I'd have an answer! I guess there could have been worse things to think about when I yawned, so I guess I preferred my positive way of keeping myself in the dark for as long as I could. Ah, the joys of being young and not taking a yawn seriously…is dangerous bliss.
    Angie

  328. REM Runner on September 1, 2011 at 12:54 pm

    Angie,

    I'm so glad that my recent posts have helped inform you and your family. I'm sorry to hear that your cataplexy episodes are worsening. This isn't easy, as there is currently no "cure all."

    Thank you for your kind words regarding my willingness to speak publicly about narcolepsy (using my full name). I chose to give up my privacy to utilize my professional training and personal passion to give narcolepsy a voice. People may discriminate against me because of this. In the long run, I believe that truthful information will outshine uninformed misconceptions.

    Sending smiles and wakefulness your way,
    Julie (a.k.a. the "REM Runner")

  329. kimberly wilson on September 6, 2011 at 10:10 pm

    Aw, we are SO proud of you and honored to have you as part of our cOMmunity! xx

  330. Chuck Bluestein on September 8, 2011 at 5:33 am

    Yoga can bring one unlimited benefits. Many Americans have fallen in love with yoga. I have been doing it since age 12.

  331. Made by Michelle on September 11, 2011 at 11:28 pm

    I must've missed that episode; I don't watch regularly.

    I'm skeptical because of the "used to" part, but I don't know much about secondary narcolepsy. This is the first I've heard it mentioned, actually. I do have a friend diagnosed with trauma-induced narcolepsy after a car accident, but it's a chronic condition for her.

    I wish she'd give more information somewhere. I'm very curious now, and I'm worried the helmet reference will just perpetuate the Deuce Bigalow stereotype of the girl drowning in her soup.

    Have you learned anything new since then?

  332. Made by Michelle on September 11, 2011 at 11:36 pm

    There's a lot of debate about the purpose of dreams, but I've always believed they were important. I kept a dream journal for a while, interpreted my dreams as best I could, and it really did help resolve issues.

    When my narcolepsy symptoms developed, though, I had way too many dreams to keep track of, and they all seemed too crazy to have any deeper meaning. But now that I'm on Xyrem, I'm back to manageable dreams, and I'm so glad I can enjoy dreaming again.

    I, too, have lots of dreams about murderers chasing me, even though it's not much of a fear when I'm awake. But I think in my case I just watch too much tv, lol.

  333. Anonymous on September 16, 2011 at 4:19 pm

    Can I say it one more time?? I AM SO PROUD OF YOU!!!
    xoxo
    NS

  334. Anonymous on September 16, 2011 at 8:16 pm

    You amaze me and inspire me! Your voice and personal journey will help so many!
    JG

  335. Christine on September 16, 2011 at 8:58 pm

    Such an incredible achievement!!! It has been my privilege to learn about this from you over the last few years and it is so exciting to see you have an outlet to share it with the world. Love you!

  336. gadgetfitter on September 17, 2011 at 2:18 am

    I often try to think of my narcolepsy as a gift due to the fact I can "sleep on it" a lot quicker than most people. It can certainly help and has in the past (some times anyway). I once "came to" in the middle of explaining a complicated process in class that I'm sure I couldn't explain while awake. The teacher caught me snoozing and tried to put me on the spot. No one was more suprized than I! lol

  337. pha on September 17, 2011 at 10:07 am

    Congrats jules!!! I've already been bragging about this great press!

  338. queenofsleep on September 17, 2011 at 5:05 pm

    Really brave of you! Is there any possibility to read the article somewhere online?

  339. REM Runner on September 17, 2011 at 7:30 pm

    Thank you for your kind comments. It's an honor to share my journey here and in Marie Claire!

    The online article will be up soon, and I will post it when available. Stay tuned!

  340. Amanda McGrath on September 18, 2011 at 12:10 pm

    Congratulations Julie! Can't wait to read the article!

  341. sbeaulieu on September 19, 2011 at 7:39 pm

    congrats!! I will be on my way out to make the purchase!!
    =) can't wait!!

  342. Anonymous on September 21, 2011 at 6:45 am

    Julie, I am so glad I met you! You continue to do amazing things to help people with narcolepsy. Thanks for all you do and the courage you have to speak up! My son will thank you someday too! MG

  343. Anonymous on September 21, 2011 at 11:15 am

    Julie,

    I just came to your blog from a link on narcolepsynetwork.org. I'm so happy that I found your blog, and I cannot wait to read the article in MarieClaire. In fact, I put a reminder on my calendar so that I won't forget to purchase it!

    I was diagnosed with narcolepsy on 9/12/2011, a mere 9 days ago. I spent the months before receiving my official diagnosis reading up on the disorder and reading stories about others with narcolepsy. The thing that saddened me the most is the fact that so many people with narcolepsy feel that they are alone. They don't speak out about what they are going through for fear that others just won't understand. But how are we to ever hope others will ever understand if we don't talk about it? I decided the day I was diagnosed that I would not suffer in silence any longer.

    It's so awesome to have found your blog and to know there are others that are willing to put themselves out there to raise awareness. Thank you.

  344. Allena on October 3, 2011 at 9:54 am

    Congrats! It is a really great article! I know that anyone with those symptoms who reads it will absolutely recognize their symptoms. And be immediately inspired – because if Julie can run a marathon, I can …..

  345. Melody Zee on October 3, 2011 at 6:45 pm

    Wtg, Julie.. wonderful article!

  346. Scott on October 4, 2011 at 9:30 am

    Wow!!! I am so impressed by the turnout, the professionalism, and the very fact of such an amazing event being dedicated to raising money for narcolepsy research. What an incredibly positive event for the broader narcolepsy community!!! Thank you for the great pics and report 🙂

  347. TRICIA on October 4, 2011 at 12:56 pm

    A truly memorable event where everything in the world felt so very right. A talented group of individuals graced us with presence and awe. My heart beats in harmony now.

  348. Gail on October 10, 2011 at 9:58 am

    Fabulous post about such an important issue! I have always believed religious institutions should not be exempt from our EEOC laws and the sexual scandals of the church have proven the need to have the religious leaders subject to all our laws protecting our citizens. It is ironic that the church which preaches love and care for all particulary the weak would take away the rights of it's teachers for protection from discrimination.
    I hope this case overturns their exception based on the basis of the teacher being "called". Thank you for following this complex case for all Americans interested in employment laws and justice.

  349. Sandy22 on October 16, 2011 at 11:36 am

    I am so happy to see individuals with narcolepsy blogging. I wanted my husband, Bruce, to do this years ago. In the early eighties, when he acquired narcolepsy, at about age 43, there were very few support groups…most being in the Los Angeles area. We were living in Ventura, CA and traveling to the downtown area wasn't much of an option. We had one son and I worked.

    When Bruce found out he had narcolepsy he was worried he had a brain tumor. He first had fallen asleep after driving to a part-time job. Five minutes later he woke with his hand on the key. He had parked the car and went to sleep.

    His most difficult task, at first, was getting use to the ritalin. He was a mad fellow and it took some adjusting until he got the right dosage.

    Trying to find organizations for support was difficult. I was fortunate we had medical insurance…even there the professionals didn't really know what they were dealing with.

    My husband had a full case of it, including the cataplexy. He had vivid dreams, sleep apnea but the worst was over coming what others though when he would have an attack while in public. I am sure you know what that is like. Many people thought he was drunk as he looked like he was going to fall down and he slurred his speech.

    If you what to know more, from a wife's point of view, please visit a lens I created in his behalf: http://www.squidoo.com/living-with-a-narcoleptic

    My husband passed away a year ago September due to lung cancer. If he were here, I am sure he would have loved to read your postings.

    Thank you for what you are doing to help the public become aware of narcolepsy.

  350. Anonymous on October 17, 2011 at 8:03 pm

    Glad the meeting went well! Sorry I couldn't make it. Hopefully we can get together in DC soon to discuss the latest finding. Thanks again for all your efforts.
    Mark Patterson

  351. Gail on October 18, 2011 at 11:01 am

    Fabulous blog and great photos! I feel like I was a fly on the wall! So happy you were able to share your writing skills and presentations were well attended. I look forward to hearing more.

  352. Melissa on October 18, 2011 at 12:37 pm

    So proud of you, Julie! Sounds like this year's conference was a really wonderful experience.

  353. The Dreamer on October 18, 2011 at 6:56 pm

    Congratulations….

  354. Amanda McGrath on October 19, 2011 at 8:55 am

    Congratulations Julie!!! 🙂

  355. chrisfly on October 19, 2011 at 9:17 am

    so proud of you julie…congrats!

  356. pha on October 19, 2011 at 9:57 am

    Wow Julie, congratulations!! That is a great honor to show how much you have accomplished in the last couple years 🙂

  357. NarcolepsyNews on Twitter on October 19, 2011 at 4:43 pm

    Dear Julie,

    The way you deal with what has become your life is an inspiration.
    The way you shared your learnings is educational and easy to try for everybody willing to give it a go.
    Thank you for being an example for some of us and a big thank you for giving narcolepsy a voice.

    It be nice to see new bloggers / writers / voices in the world of N/C.

  358. Sharon O on October 19, 2011 at 9:28 pm

    Ha, Julie, loved attending your talks. Not sure I'm going to do a marathon any time soon…but if I do, the run/walk thing is the way to go. Last time I did a triathlon, I did it that way by necessity, but it sounds like a great way to train for longer distances. 🙂

    Happy to discover your blog during the conference. You and I share a positive outlook, and it's nice to spread some optimism to those who are newly diagnosed or ensnared in mourning past realities. I sure enjoy hearing how others are finding new joys. 🙂

  359. Anonymous on October 20, 2011 at 10:35 am

    Even though I don't have cataplexy, I found it hard to watch as I know the struggles with medications and the perception to others.

    Someday I might get back to getting in to work at more 'acceptable' time.

  360. rkmlai on October 23, 2011 at 4:38 pm

    I enjoyed my time at the conference. Meeting you in person was a highlight, one of many for me at the conference. I have appreciated reading about your experiences and perceptions as translated to remrunner. Thank you.

  361. amorninggrouch on October 23, 2011 at 8:53 pm

    I love it!!

  362. Anonymous on October 24, 2011 at 11:11 am

    I am 38, and diagnosed 3 years ago…although I am pretty sure I have had both for about 20 years. This episode was so great. I made my boyfriend watch it…he cried. He always made fun of me and doubted that it was even real. Thanks MTV, Julie, and Katy!

  363. Jessica J. H. Utley on October 24, 2011 at 10:00 pm

    I missed it! I can't seem to find out when they are going to show it again. For some reason I thought it was coming out November 5?

  364. Anonymous on October 26, 2011 at 9:18 am

    How exciting! Can't wait to see the video on line as I don't live near DC. Keep going Julie….you continue to work hard to spread awareness. Thank you!

  365. Tricia on October 26, 2011 at 9:48 am

    WOW, I am speechless, and that is just not usual for me. I am thrilled. A voice for narcolepsy is just what is needed. I feel so good today for all of us. What a banner day for you Julie, you make me so proud.

  366. Gail on October 26, 2011 at 11:39 am

    Congratulations Julie! You truly deserve the National Narcolepsy Awareness award you just received in Las Vegas. You have really inspired me to exercise through my aches and pains and pursue my dreams through adverse situations. I look forward to watching you on NBC soon!

  367. Unell Hussey on October 26, 2011 at 12:59 pm

    Thanks so much Julie. You are a great role model and spokes person for Narcolepsy, Unell

  368. Melissa on October 26, 2011 at 1:21 pm

    Well done, Julie! Please let your loyal readers know when we can watch the interview online! CONGRATULATIONS!!!

  369. Anonymous on October 26, 2011 at 8:48 pm

    Just heard about this and I cannot wait to see it!

  370. Trinity on October 27, 2011 at 1:47 pm

    I second Melissa! Looking forward to it!

  371. Made by Michelle on October 31, 2011 at 10:02 pm

    Happy Halloween to you too! I didn't get a chance to carve pumpkins this year, and I'm so disappointed. I like how yours came out. It took me a minute to figure out The Yawn, but now that I see it, he's really cute! 🙂

  372. Anonymous on November 1, 2011 at 6:56 am

    It was wonderful meeting you in person, Julie! Looking forward to seeing you on TV soon! – Gretchen

  373. Gail on November 1, 2011 at 10:07 am

    Adorable! Thanks for inspiring and sharing!

  374. Melissa on November 1, 2011 at 10:48 am

    You are so creative and talented! They look great!

  375. Anonymous on November 3, 2011 at 1:56 pm

    Love you creative pumpkin design.. Well done!

  376. Anonymous on November 4, 2011 at 3:38 am
  377. Amelia on November 8, 2011 at 9:47 am

    too cute! i love the yawn pumpkin. i didn't get to carve any pumpkins this year, but i prefer looking at the creative things other people like you come up with!

  378. Anonymous on November 9, 2011 at 11:56 pm

    Thanks for posting the show on your blog. I will definitely refer this site to my friends. Seeing the symptoms is easier than trying to describe my symptoms. Thanks again.

  379. gadgetfitter on November 10, 2011 at 12:19 pm

    Well said Julie!

  380. Gail on November 10, 2011 at 4:59 pm

    So true! So many teens brag about how little sleep they get and most teen car accidents are caused by tired teens falling asleep at the wheel or alcohol.

  381. Ann's Fab Fifty on November 12, 2011 at 10:17 am

    Yipee!!! So glad you made it to the class!! It sounds like you had a great experience, perhaps even transformative!

    I also have narcolepsy and since starting Nia…well, it's changed my life! My symptoms are SO much better. Nia gives me such joy which in turn helps my energy levels…and of course, I sleep better!

    Yes, I too had a lot of emotion to let out. I cried so many times during the first six months…letting go of all the grief I carried in my body. Now, when I think of Nia, I get a huge smile on my face. My Nia community is such a beautiful group of people and we get to dance and play with each other a few times a week!!! We laugh, giggle, exclaim…and at other times we are quiet and serene. The beauty of Nia is that you do what your body needs. There aren't "rules" like in some other fitness classes. I don't feel like I have to "keep up" with anyone since we are all working in our own bodies!

    When I started Nia, I couldn't even look at my image in the mirror. I was so angry at my body and the cards I felt life had dealt. I couldn't move my hips – at all! The idea of doing a "shimmy" horrified me. I felt awkward and uncoordinated. But over time, the layers started to fall away and my little girl inside – the one who stop playing a long time ago – started to come out to play again!

    Now…well, it's a whole new day. I'll dance anywhere and am so confident about how I move through life! I am 50 years old, but inside, I feel like I'm 30!

    Nia has changed my life! 🙂

    Ann Austin
    St. Louis, Missouri

    Here's a link to my story if interested:

    http://www.gatewaynia.com/austin_story.htm

  382. Anonymous on November 15, 2011 at 9:53 am

    I am looking for to you posting a link. I can't wait to see it. Haven's interview will air this Thursday, Nov. 17 on ABC channel 11 WTVD during the 4:00 broadcast, if you have an opportunity to watch. I am assuming that the segment will be quite short, but hopefully informative. If you have any friends in the NC area, let them know. Thanks for having educated me so much on Narcolepsy and Cataplexy. Much love and Happy Thanksgiving!!!

  383. Anonymous on November 15, 2011 at 1:37 pm

    Julie, you continue to inspire me! Can't wait to watch your video…..it will be from your link though…I'm in MA.

  384. Anonymous on November 15, 2011 at 5:31 pm

    Hi Julie,

    The segment just aired – you did a great job!!!! Thousands and thousands of people just saw this and now have an understanding of what narcolepsy is all because of YOU!!! I think NBC News 4 did a nice job setting the stage for you and that you did a great job explaining what you've gone through. And, as an added plus, you looked beautiful! Of course you always do, but you never know how its going to turn out on camera. 🙂

    Thanks for getting out there and doing this on behalf of everyone with narcolepsy!

    Kerry

  385. wombless-wife on November 15, 2011 at 6:40 pm

    Wow REMRunner…such a great description of a situation that hits all too close to home with me. I am 26, live right outside DC, and was just recently diagnosed with Narcolepsy… 12 days ago to be exact…. although I believe i have had it since a child. Can't wait to read the rest of your posts. 🙂 Thank you.

  386. Anonymous on November 16, 2011 at 9:46 am

    Thank you so much for continuing to help educate about this disease. All of the PWN and their families thank you from the bottom of our hearts!

  387. Mary Ann on November 16, 2011 at 3:08 pm

    Julie,
    I just watched the segment online. What a great educational piece! You are such an inspiration and representative for those with sleep disorders.

    Mary Ann

  388. Anonymous on November 16, 2011 at 4:00 pm

    Thanks, so much! I just watched your video. NICE!!! I hope our interview will go as well as yours. You are such an inspiration to so many, one of which is a very sweet-spirited little girl who won my heart completely 10 wonderful years ago. Thank you, again.
    Diantha Cavnar

  389. Valerie @ City|Life|Eats on November 16, 2011 at 9:02 pm

    I love how the video was both really informative about narcolepsy generally but also told your personal story 🙂

  390. Gail on November 17, 2011 at 11:05 am

    Julie,
    I just got the chills following a hot flash reading this blog. I wish Haven all the best. You are a great roll model for Haven. The Narcolepsy Network is lucky to have brought you together.
    Congrats to Haven.

  391. Heather on November 17, 2011 at 12:33 pm

    I, too, got chills and a hot flash, followed by a small head bob after reading this. 🙂

    Narcolepsy may be a challenging road to travel some days, but it helps to have a navigator through a community of such awesome people to support one another and to help raise awareness.

  392. Gail on November 19, 2011 at 12:10 pm

    Great suggestions! I have used them in the past and need to get out of bed and do them again as soon as my back feels better and sore throat and congestion go away.

  393. Be Morris on November 22, 2011 at 11:57 am

    I came across this post when looking up whether or not there is a connection between my narc and the weather. The weather in DC is killing me today and I feel I'd prefer some torrential downpour than the subtle drizzling. I, too get a rush of energy from storms but this weather is causing a nap to daunt over me. I cannot function at all right now but your article is very inspiring. Did you run in Rock Creek Park? Also, thanks for keeping up this blog I tried for a while and I hope to get back to it.

  394. Gail on November 23, 2011 at 9:33 am

    " physical sensations and mental states-of-mind can change in a heart-beat.  I challenge you to measure your feelings by moment instead of by day. "
    Julie, this is great advice! Even being sick there are times of the day I feel better and have energy to accomplish something. Thanks for motivating and inspiring us!

  395. Anonymous on November 24, 2011 at 9:02 pm

    I just read your Valentine's posting, as I just found your blog via a friend. The explanation about cataplexy being worse from your own joke or internal thoughts is sooo true. I have been diagnosed with Narcolepsy for nearly 2 years, but developed cataplexy a year ago, while pregnant. I have "trained" myself to distract my brain when I can tell someone is being funny- basically I fake laugh a lot. But when the funniness is internal, you can't distract your brain out of a cataplexy episode. I am looking forward to reading more on your site.

  396. Sasha on November 30, 2011 at 9:23 am

    Thank you Julie!

    I'm so grateful you are the voice for all of us. Keep it up, and when is the 2012 Walk for Narcolepsy? 🙂

  397. Justin on November 30, 2011 at 10:07 am
  398. Life on Pause on November 30, 2011 at 12:36 pm

    I love this so much. Julie, you're a true inspiration. I try and be as calm and informant as I can when I share Narcolepsy, but sometimes the jokes, jests, and odd stares can be too much. It's people like you who give us PWN's the courage to speak out.

  399. Melissa on December 1, 2011 at 1:12 pm

    Sounds like an interesting exhibition and I like the visitor participation component! As always, I'm so proud of your bravery, commitment and poise! You're an inspiration to many. 🙂

  400. Miss Diagnosis on December 1, 2011 at 2:18 pm

    Awesome, Julie! Congrats on the feature and thank you for educating people about the condition. If I ever move back to Northern VA, you'll have to be my yoga buddy. 🙂

  401. Lelia on December 1, 2011 at 10:50 pm

    Once again Julie, you are an inspiration!! Thanks and keep up the good work 🙂 Keep on fighting the good fight. I am a person with Narcolepsy and I am PROUD!!

  402. Melissa on December 2, 2011 at 1:28 pm

    Way to go Julie!

  403. Valerie @ CityLifeEats on December 6, 2011 at 8:16 pm

    This.is.brilliant 🙂

  404. Saraiah on December 6, 2011 at 10:00 pm

    It is brilliant. I love the idea so much because narcolepsy truly *is* fascinating. The fact that some of us dream at times while awake is amazing. The leaps that have been made in understanding the brain as a result of studying narcolepsy are amazing too.

  405. Julie on December 7, 2011 at 9:53 am

    Great post! I loved your presentation in Las Vegas. You definitely made me rethink how I approach this daily question 🙂

  406. sbeaulieu on December 13, 2011 at 12:21 pm

    love this post!
    it's exactly how i go about it
    i say enough to tell them what narcolepsy is, but leave it hanging where there are questions to be asked if they truly are curious or care to know more about me. the people who ask the most questions i love. i enjoy spreading the word on such a fascinating topic!

  407. Gail on December 14, 2011 at 6:14 pm

    Congratulations on achieving the pose and sharing the Magic of the moment with reverence and inspirational photos and quotes.

  408. Anonymous on December 15, 2011 at 11:20 am

    Julie, you are amazing! I love your courage!!!! Keep going and thank you!

  409. Julie on December 16, 2011 at 2:38 pm

    I'm always inspired by your positive attitude towards every challenge you tackle, and this is no exception! I, for one, have never gotten into the peace yoga brings others; it's just not my kind of thing. But I see what yoga is to you–it's like an escape from the daily struggles we deal with trying to control our bodies–and I am so glad that you've found something amazing that you can still do, even perpetually sleepy 😉

    That pose is pretty unbelievable, so double congrats on that. I can't imagine doing that even with full body strength and control!

    Sending wakeful thoughts your way,
    Julie (a.k.a. the OTHER Julie)

  410. Lelia on December 18, 2011 at 10:25 am

    That is awesome Julie!! I am so happy for you and proud of you!! I have tried yoga. My husband loves P90X and one of the workouts is yoga. I completely understand the "Oh hell no" because that's exactly what I say when it comes time for that position, along with many others.

    You never cease to amaze me, inspire me and flat out motivate me!! Today I will use our new treadmill, thanks to you!! I see how the healthy side of you helps the Narcolepsy part of you and I want that.

    You manage to combine all aspects to develope YOU!! And you are AMAZING!! Never forget that!! You have proven to yourself over and over again that you can accomplish ANYTHING. Not only do you manage to help yourself but in the process you also help others around you.

    What I am saying is, if you ever need a pick me up, you know where to find me. And as always…Thank you for being YOU!!

  411. Keith R. on December 20, 2011 at 10:41 pm

    Thank you! This made me realize how fascinating my new life will be. 8 weeks diagnosed. Pretty cool that part of my treatment is taking daytime naps!

  412. Melissa on December 21, 2011 at 12:36 am

    Congratulations, Julie! You did it! I especially love the expression on your face in the crow pose…it looks to me like wonder, peace happiness! 🙂

  413. Lelia on December 30, 2011 at 9:33 am

    Here's to many more Dreamy Years to come. I just told my husband the other day, "I'm not going to have just one New Years Resolution this year. I am going to have a New Years List." It's a list to be Happy and Healthy.

    Happy New Years!

  414. Gail on December 30, 2011 at 2:09 pm

    Wishing you a happy and healthy new year full of surprises and giving yourself permission to revise your lists and discard those things that just don't get done. Life happens while we are planning.

  415. Anonymous on December 30, 2011 at 4:35 pm

    You have only just begun Julie. I can't wait to see what happens in 2012 and beyond! You are doing amazing things and thank you again for the courage to "SAY IT LOUD".

  416. S.Suttle on December 31, 2011 at 11:08 am

    Beautiful. Thanks for taking us along for the ride. Wishing you a fascinating 2012!

  417. saltgirl on January 1, 2012 at 5:22 pm

    Thanks, Julie, for the inspiration. I'm still working up to my blog. Happy New Year! Happy blogging!

  418. MmommaT on January 1, 2012 at 6:23 pm

    Wow, it's funny that you post this today, because, while searching for natural narcolepsy treatments (a most unsuccessful search), I stumbled across a slew of blogs–which goes to show how little "official" information there is about the topic in general. I was a self-proclaimed blog-hater until, well, this morning around 6 am. What I read was bits and pieces of experiences of narcoleptics of different ages and backgrounds and was hooked. While looking for something that I wanted, I found something that I needed: to hear the words of others dealing with what I do everyday… And so I was inspired to write. I started my blog almost immediately, excited to share. Thanks for the tips! I haven't published anything in a looong time, so this will make me feel like I'm putting my mark on the world, even if no one ends up reading or following… Happy blogging, indeed!

  419. Lelia on January 2, 2012 at 11:43 am

    Julie-

    You did indeed hit it on the nail. I found a few things that were, "wow ya that really would help" and "Yes, the sooner I get over it the better" I started my Blog a month ago today and have had 212 unique hits and even though some of the people I originally wanted to read it, havent, I have possibly helped 212 people just like me feel like they aren't alone. I use my blog for self reflection. This is how it was, or felt like, and though it was like that, or felt like that, I learned this. In other words, I try to find something positive about my experiences. It helps to keep me going. If I just focus on the negative, I become depressed and that's not how I want to feel and not what I want my readers to feel after they leave my blog.

    Now off to find some multi-media for my blog 🙂 Thanks Julie!!

  420. Gail on January 2, 2012 at 1:02 pm

    Julie,
    Thank you for sharing the blogging info. I do love your District of Sculpture blog! It amazes me how many fabulous sculptures we have in the Washington Area and you make them new to me. They come alive in my mind. Keep on blogging! We are reading and absorbing your gems of wisdom, the beauty around us and inspiration.
    Happy New Year of blogging!

  421. Anonymous on January 3, 2012 at 11:13 am

    julie

    In your world of narcolepsy, you face many difficulties and darkness, but you bring a beautiful messages in your blog that are like lighthouses in the darkeness. Your writing and photographs are beams of hope of awareness of the beauty and realities of all our lives, if we only are open to that which is always present if you can see it. thank you for sharing your gifts with us all. fct

  422. Sarina on January 7, 2012 at 8:25 pm

    I'm a 15 year old girl and I suffer from Narcolepsy as well, everyday Is a struggle for me with school and changing my medication to find the right one. When my doctor told me to help people understand and educate I started a Blog/website/forum area for people who suffer like this to, and i'm hoping to change peoples idea of it being a thing that traps you make it like a freedom and grasp the fact that we can make a difference. So please come visit my website and read my blog.

    http://freedomfromnarcolepsy.webs.com/

  423. Denielle Nigretto on January 9, 2012 at 2:39 pm

    From: denielleinevolution.blog.com

    Hello Julie,

    For one, I was very happy to see your page in the magazine. I happened to stop off to get some lunch, and picked up the mag to bide myself some time…. and there it was.. wonderful in black and white… an article adressing Narcolepsy.

    I have had this since as far back as I can remember. I have dealt with hefty hallucinations, cataplexy while sleeping, light sleepwalking/talking, dozing off in an automobile while stressed… you get the picture.

    I have always been hesitent about talking about it. For one, I am concerned about having my license revoked, as well as the stigma… funny enough, for a long time I was more comfortable with people knowing I am a recovering addict, than knowing I have a severe sleep disorder.

    I have to say, I am not a big supporter of medication… I work on managing my stress levels, and getting to the root cause of the disease.

    I look forward to hearing from you. I am interested in getting involved with the WDC Narcolepsy group.

    Thanks,
    Denielle Nigretto

    I have begun a blog concerning personal evolution… I'd love to add your site as a link, please check it out.

  424. Lelia on January 10, 2012 at 2:23 pm

    Julie-

    In December my husband bought us a trendmill and I have been procastinating my using it. When we bought it we talked about training for running in a 5K at some point in time but kept putting it off and off. When I saw you post about this last week sometime I looked at my husband and said, "I really need to get on that." So yesterday I started with walking on it for 20-30 minutes each day. Start with baby steps so I don't get too burnt out. Thanks for the reminder!! This is suppose to be the year to get my health on the right track and I won't know if I can do it unless I try!!

    Can't wait to see how your 21 days of Yoga goes!! Good luck, I know you can do it.

    -Lelia

  425. Gail on January 10, 2012 at 6:17 pm

    Great start Julie. I am inspired by you daily.

  426. rkmlai on January 11, 2012 at 10:21 pm

    Hello REMRunner,

    I appreciate your post. I appreciate the sharing of your perspective, as it has been what has been useful to you.

    I appreciate the suggestion to set moderate goals. I hear in that suggestion the permaculture principle "Start small". I also appreciate the suggestion to have a theme that attracts a diverse audience as increasing diversity is also a permaculture principle

    Sharing; as an architecture student of Wurster Hall, I do enjoy what I have seen of your pictures posted at http://districtofsculpture.wordpress.com

    🙂

  427. rkmlai on January 13, 2012 at 10:54 am

    I had a hard time finding a pumpkin in the Southern Mohave desert. Finally got a ride into Las Vegas on the 31st and a Sharpie is what I had on me, to make the image before the deadline time of image submittal.

    I had fun, Thank you !

  428. manicramblings on January 18, 2012 at 12:14 pm

    Julie, thank you for everything you do for all of us… Holding you in my heart. Not just now, but always.
    <3<3<3

  429. Anonymous on January 18, 2012 at 9:07 pm

    Awesome Blog!

    Every time my Sleep Physician starts a new medication for me, my partner asks "So how long will you be taking this for?"…

    …Grrrr! "I don't know! Till they find a cure?" LOL

  430. Lelia on January 19, 2012 at 8:49 am

    It's absolutely beautiful and I may not know him but he sounds like he was a loving and proud father. Follow your dreams and he will live inside you forever. You are truly amazing.

  431. moi on January 20, 2012 at 8:09 am

    Julie, I am so sorry to learn of your shockingly sad news. I'm sure you made your father proud.

  432. Jess on January 20, 2012 at 10:22 am

    Julie, I am so sorry to hear of your loss. I am also from MA and have been following your blog for 2 years now, since I'v been diagnosed with N. My father also passed away unexpectedly, 2 months ago. Your writing and tributes to your father will make him proud!

  433. Sasha on January 20, 2012 at 10:24 am

    Thank you for your beautiful words.
    I will be praying for your family as you grieve this tremendous loss.
    -Sasha

  434. Ramez ElMofty on January 20, 2012 at 10:27 am

    Sorry for your loss, may he rest in peace.

  435. Carlyn on January 20, 2012 at 10:35 am

    So beautifully written. Love you Julie.

  436. Miss Diagnosis on January 20, 2012 at 10:39 am

    Much love and comfort to you in the death of your father. Praying for you and your family. <3

  437. Saraiah on January 20, 2012 at 10:56 am

    Julie sweetheart, your dad was handing you the seeds of wisdom, kindness, courage, and many more things throughout your life. I know this in spite of the fact that I never met him.

    I know because in your writing, I see the seeds he handed you are no longer seeds – they are great blooming rose bushes, daffodils, lilacs, dogwoods, cherry trees… I read your post, and realize that in the midst of tremendous pain, you continue to flower.

    Not everyone has the wisdom to plant the best seeds they've been handed, and to tend them so well. You cannot see your dad anymore, but I do not believe that he is gone. And right here, right now, your father lives in you in an absolutely real way through this garden you're growing.

  438. Tricia on January 20, 2012 at 1:52 pm

    Julie,

    Try to remember when things get incredibly tough that I am here ready to dance and twirl for you until you have the strength to do it again yourself. With or without cataplexy, I am your girl.

  439. Melissa on January 20, 2012 at 2:38 pm

    Julie,

    I just would like to let you know that you and your family is in my thoughts and prayers during this time. You're an inspiration, no doubt that you have your father's remarkable traits.

    Lots of love!

  440. Melissa on January 20, 2012 at 2:45 pm

    This comment has been removed by the author.

  441. Anonymous on January 20, 2012 at 2:51 pm

    Julie I am so sorry that your father has passed. I am sure he is looking down at you with the greatest pride and support! I only wish I had your gift for words so that I could properly express my grief over your loss. Chris

  442. Unknown on January 20, 2012 at 3:16 pm

    Julie,

    I think my dad already told you, but I'll say it again. The obituary was lovely, as was this. You did a great job. Our whole family will miss your dad very much, and you are in my thoughts.
    –Casey

  443. Strength + Rebirth = Immortality on January 20, 2012 at 3:53 pm

    You made me cry, dammit. You are so beautiful, Julie, and it is clear to me your dad has a lot to do with that. I wish there was something I could say to ease some of the hurt, but all I have is – thank you. Thank you for always being an inspiration to all of us, thank you for being strong enough to share these most intimate moments, thank you for sharing your dad with us.

    As a Daddy's girl in the same age bracket, even trying to comprehend what you must be feeling makes my hands shake and my heart break. I pray you and your family are able to quickly move through the worst together and get to thecelebrating of life.

    He is always with you, he is always holding you.xoxo

  444. livingwithn24 on January 20, 2012 at 4:09 pm

    What a beautiful tribute to your father. He must have been a wonderful man. I am so sorry for your loss.

  445. Made by Michelle on January 20, 2012 at 4:49 pm

    I'm so sorry for your loss. I'm sure he's very proud of all you've accomplished, and no doubt what you'll continue to accomplish.

  446. LRopiak on January 20, 2012 at 5:36 pm

    I don't know you very well, but you have been a wonderful advocate for people with Narcolepsy… thank you. It pains me to hear of your loss. Your father raised an strong and amazing woman. My thoughts are with you and your family.

  447. NarcoGirl on January 20, 2012 at 8:20 pm

    Oh Julie, I'm so sorry for your loss. I'll be praying for comfort for you and your family.

  448. manicramblings on January 20, 2012 at 10:27 pm

    "When I awoke the next morning, it was still true."

    I absolutely hate this. Its exactly what goes through a persons head, and I appreciate you voicing that. You always know just how to write your feelings. Thank you.

  449. Unell Hussey on January 20, 2012 at 11:10 pm

    Sorry to hear this news. He will always be with you.

  450. Anonymous on January 22, 2012 at 11:19 am

    So sorry Julie. We all know it will happen one day but we are still never prepared. My thoughts and prayers are with you and your family. Big hugs, Nancy Ackerman

  451. Susan on January 23, 2012 at 3:48 pm

    It is so hard to lose a parent, especially one who is as special as your dad seems to have been. Though he will not be with you physically, he will be with you in so many other ways.

  452. Kristen on January 25, 2012 at 7:25 pm

    I am so, so, so sorry about the loss of your father. I can't imagine. You write about him so beautifully.
    Hugs and prayers to you and your family…

  453. Anonymous on January 27, 2012 at 1:35 am

    I find this very interesting. I'm a 3rd year pharmacy student and narcoleptic. I was skeptical of a direct link between the influenza vaccine and narcolepsy. I feel like many environmental/bacterial/viral triggers lead to turning on of narcolepsy genes. I feel narcoleptics want a solid 'why' so they take vaccines and run with it. Thanks for the reputable study info.

  454. Gail on January 28, 2012 at 11:38 am

    Julie,
    As always you are wise beyond your years and an inspiration to me. Listening to your body as well as your inner voice you cannot loose your way in life.

  455. Melissa on January 28, 2012 at 11:50 am

    Julie–your ability to eloquently make sense of your experiences always amazes and inspires me. You are so brave to honestly share these insights with us. Thank you!

  456. Anonymous on January 29, 2012 at 9:14 am

    Julie, love this post.

  457. Anonymous on January 29, 2012 at 10:53 pm

    Just wanted you to know that others share your sadness at your fathers' passing. However it is good to see that there are things like Yoga that can help you to go on as I know your father would have wanted you to do. Peace and comfort to you.

  458. chris on January 30, 2012 at 1:28 pm

    julie, thank you for your post i find it inspirational and intelligent. I guess that I am somewhat lucky in that I was diagnosed with narcolepsy, cataplexy, restless legs, and more at the beginning of my senior year in high school.I have lived in Colorado for the past 20 years and I am always wondering how altitude affects my narcolepsy. I am a skier, mt.biker, ice hockey player, soccer player, hiker, and carpenter. I am also a beginner at yoga. I am very proud of you for your educating the public at large. We can be athletic, intelligent, and an inspiration to others.I totally understand the strain and drain that heavy emotions take on your body.Since you seem to be somewhat new with your diagnoses I encourage you to be prepared for subtle changes that occur with your narcolepsy.Obviously you are familiar with the progressive side since it doesn't all happen overnight.It definitely does plateau for quite awhile and any changes you might encounter in the future will be much more subtle.The fact that you take yoga so seriously will only help you in noticing those subtle changes.Personally,I believe that staying in shape is key to being on top of your narcolepsy so good on you.Being 41 has led me down several different paths, but employment has always been my most difficult realm in life, so if you have figured out a good way to make a living I suggest you stick with it and appreciate every bit of it. Losing your father is obviously difficult, but I trust that your spiritual connection will help you with that, just as it helps you with your narcolepsy. Peace to you and the rest of the planet.

  459. manicramblings on February 2, 2012 at 9:39 am

    Awe! Your so graceful! So you do this AND yoga? which do you feel is working better for you or are they addressing different aspects?

  460. REM Runner on February 2, 2012 at 9:45 am

    Hi Manicramblings, Thank you for visiting my blog. Nia and yoga are very different for me.

    Nia is more movement/creative dancing – it's a bit out of my comfort zone but it helps me explore my body in ways I don't usually. As a writer, I find this amazing for fostering creativity. I smile and giggle the whole class and end up getting a great workout! I do Nia once a week, yoga everyday!

  461. Anonymous on February 2, 2012 at 5:42 pm

    Hi I just saw this post, I guess because we were out of town when it was posted. Just wanted to let you know there is a pediatrician, Dr. Mark Patterson in Roanoke, VA who has a daughter with narcolepsy with cataplexy. He knows the difficulty of getting a correct diagnosis. Hope all goes well for your daughter.

  462. Anonymous on February 7, 2012 at 9:36 am

    Julie, thanks for the info! Can't wait to put on my walking shoes for a great cause.

  463. S.Suttle on February 7, 2012 at 1:43 pm

    Thanks, Julie. See you there!!

  464. Anonymous on February 7, 2012 at 6:03 pm

    Thank you for making this happen, Julie! A fun event for a great cause! I'll be there… Kerry

  465. Julie Fain on February 7, 2012 at 7:21 pm

    OH MY GOD, that's my eighteenth birthday! I am SO going to be there, no matter what it takes 😀

  466. REM Runner on February 7, 2012 at 9:25 pm

    Thank you all so much for your support – can't wait!

    Please contact me if you are thinking about coming in from out of town. We have some folks coming from various parts of the country for the walk!!

  467. Heather on February 8, 2012 at 12:52 pm

    I would love to come! I'll have to see if I can swing a weekend trip.

    Thanks so much for your hard work, Julie!

  468. Sha on February 13, 2012 at 7:49 am

    Oh no! Now I have to come up with a cool T-shirt. Off to Pinterest I go 😉

  469. Rachel Everett on February 14, 2012 at 2:18 pm

    Just wanted you to know . . . I'm thinking of you during this difficult time. From the online articles and your writings, I can tell that your dad was an amazing man who will be missed dearly. I'm so sorry for your loss.

  470. Rachel Everett on February 14, 2012 at 2:23 pm

    Somewhere a journey begins at the end of the worldly existence we know, Somewhere a path stretches over the stars, and rivers of memories flow… Somewhere a silence is heard far away and the brightness of day fills the night, Where the trials of life are resolved into peace. May it comfort you to know that your father is at peace in the universe and will live on in the hearts of everyone who loved him.

  471. Rachel Everett on February 15, 2012 at 12:55 pm

    Hi Julie! Please let me know if you'd like a couple more walking partners at the March! Jessica Shaool and I might be able to make it.

  472. Emilee on February 17, 2012 at 9:35 am

    Good luck Jules 🙂

  473. Gail on February 17, 2012 at 10:09 am

    Julie,
    Channel your inner voice and let it flow. Write about your father and let it be a new chapter you did not plan. Writing from your heart will help you heal and connect with the readers. Love you.
    Gail

  474. REM Runner on February 17, 2012 at 10:17 am

    Thank you, Emilee!

  475. REM Runner on February 17, 2012 at 10:17 am

    Great advice, Gail! Thank you.

  476. Heather on February 17, 2012 at 3:04 pm

    2.5 chapters? Woohoo! Almost there!

    I know a little bit about how you're feeling in regards to writing about your dad. My mom passed away several years ago, and writing about her is still difficult. It is healing in the sense that you think about fond memories and the positive impact that special person had in your life, but the pain of losing them never quite goes away. Just know that you've got a ton of people rooting for you!

    Love the photo of you crossing the finish line at the marathon. 🙂

  477. Anonymous on February 17, 2012 at 10:08 pm

    Definitely sending positive vibes! Have only recently come across ur blog and to read that a book is pending is inspirational. I have recently been diagnosed n living in Australia I feel quite isolated from ppl who have awareness of the condition. A book would help me feel connected. Do it for the ppl that feel so alone in this xx

  478. manicramblings on February 18, 2012 at 2:02 am

    You are such an inspiration Julie. We are both doing such great things right now! I love knowing that I am not alone on the new paths we are carving out for others. Thank you!

  479. REM Runner on February 19, 2012 at 6:11 pm

    Thank you, Heather! It's been a rollercoaster of emotions writing scenes that include my Dad… Tears and laughter all together. So many great memories.

  480. REM Runner on February 19, 2012 at 6:12 pm

    Thank you for your messaage all the way from Australia! Maybe we'll bring the SLEEP WALK to your country to help raise awareness next?!

    Thank you for reminding me of the importance of this project. I can't wait to share it with you soon. None of us should feel isoldated and alone. We are in this together. 🙂

  481. REM Runner on February 19, 2012 at 6:13 pm

    Thank you, Marcia. So excited for the future. Lots to look forward to. Stay strong!

  482. Gail on February 20, 2012 at 10:38 am

    So glad you are back to dancing. I love the image of juggling clouds.

  483. One Nia Girl on February 22, 2012 at 2:54 pm

    Beautiful. Really beautiful. Thank you so much for sharing this.

    All the best,
    Jenny Block
    aka One Nia Girl

    http://www.facebook.com/pages/One-Nia-Girl/165667146882531

  484. rkmlai on February 27, 2012 at 6:45 pm

    for those of you who cannot make it to the "SLEEP WALK 2012" walk in Washington, DC, I offer in a spirit of contribution, an alternative. A "Sleep Walk 2012 (West Coast)" https://www.facebook.com/events/262996803777521 will be held in Sacramento, California on Saturday, March 10, 2012
    9:00am until 11:00am

  485. REM Runner on February 27, 2012 at 9:58 pm

    Thank you so much! I'm so excited about the California SLEEP WALK 2012 in Sacramento. I wish I could be in two places at once. Somehow I think you might have better weather. 😉

  486. Gail on February 28, 2012 at 5:50 pm

    I so look forward to joining the other 90 walkers to raise awareness about Narcolepsy in our capitol.

  487. NarcoGirl on March 1, 2012 at 2:53 pm

    Its just too cool to read a blog post about sweet potatos!!! You rock Julie!
    And thanks for the shout out too 🙂

  488. Rachael R. Resch on March 1, 2012 at 5:14 pm

    Thank you for sharing your story. What I love about Nia is that all emotions are welcome. The Joy of Movement can hold them all: love, grief, play, anger, whimsy.

    Blessings on your healing journey,
    Rachael R. Resch, PT
    Nia Training Faculty

    http://www.NiaNow.com/RachaelResch

  489. Anonymous on March 1, 2012 at 5:17 pm

    Awesome. Nia is like coming home to me.

  490. Joanie Brooks on March 1, 2012 at 5:29 pm

    Hi Rem! Your story is beautiful and I am sending you love and light. I am so happy you went back to Nia and your supportive community. Keep dancing and yes the dark clouds do turn into sunshine!

    Joanie Brooks, Nia Training Faculty
    Nia White Belt Trainer

  491. Yamuna on March 1, 2012 at 5:29 pm

    Thank you for sharing your story! My latest Nia catch phrase is "Find the Joy" I find no matter what is going on my life, sadness, craziness, stress………… in Nia class I will find the JOY again!!!

  492. JIllpagano on March 1, 2012 at 5:37 pm

    Pockets of sunshine huh…love it. Creative imagery. Perhaps a Nia teacher in training??
    Thanks for sharing your story.
    Jill Pagano

  493. Roberta on March 1, 2012 at 5:44 pm

    It's amazing how so many of us come to classes with an emotional issue, or a physical need for healing. We're only human! I love how Nia invites us to tune into our sensations and emotions, to dance just as we are.

  494. danielle on March 1, 2012 at 5:47 pm

    ♥ ♥ ♥

  495. Randee Fox on March 1, 2012 at 6:05 pm

    This is moving and beautifully written. Thanks for being so open. Dancing with the waves that grief can bring, I have learned, is incredibly healing.

  496. Anonymous on March 1, 2012 at 8:09 pm

    Thank you for sharing your beautiful story. You really are in good cloud juggling hands with Suz! May your movement bring you great joy and healing

  497. REM Runner on March 1, 2012 at 8:11 pm

    Thank you so much for all of your support and kind comments. This made my day!!!

    With a big smile and gracioius heart,
    Julie (aka the REM Runner)

  498. Jackie on March 1, 2012 at 8:49 pm

    I am so touched and glad you found your way back to your Nia community. They will hold and support you with love as you heal!

  499. Kate Finlayson on March 1, 2012 at 8:51 pm

    Wow Julie, How wonderful that you had the courage to step back into the Nia class, let go of the fear and receive the blessings of juggling clouds :). I can imagine that your father left this world floating on the very Joy you danced that day. Grief is an amazing process and I am so grateful that Nia gives me the beautiful gift to FEEL all my feelings as I experience JOY. Bless you on your mission as you shed light on Narcolepsy. Keep on dancin' through Life! With joy, Kate

  500. Kate Finlayson on March 1, 2012 at 9:00 pm

    Julie, I so admire your courage to step back into your Nia class and receive the blessings of Juggling Clouds! Many times I have thought I needed to be in a certain mindset to go to class, ready to celebrate. But I must say that it is in those tough times that Nia brings incredible healing to my emotions and spirit when I need it the most. Your description of Grief was right on. In reading about your dad, I have a feeling he left this earth flowing with the Joy you created in your dance. Keep dancin' through life, and may you continue to bring awareness and light to Narcolepsy.
    With Joy, Kate

  501. Julie Wylie on March 1, 2012 at 9:53 pm

    Our stories inspire and encourage. Thank you for sharing yours. A grief therapist pointed me toward Nia. I've never looked back…
    Blessings along your journey.

    To Your Health,
    Julie

  502. Julie Wylie on March 1, 2012 at 9:54 pm

    Our stories inspire and encourage. Thank you for sharing yours.

    A grief therapist pointed me toward Nia, I've never looked back…

    Blessings on your journey.

  503. Jule Aguirre on March 1, 2012 at 11:05 pm

    wow. I love your raw vulnerability in finding your way back to moving The Nia Way…your heart's way… your body's way…

    beautiful. just beautiful!

  504. Jule Aguirre on March 1, 2012 at 11:06 pm

    wow. I love your raw vulnerability in finding your way back to moving The Nia Way…your heart's way… your body's way…

    beautiful. just beautiful!

  505. Adi Goren on March 2, 2012 at 12:05 am

    Feelings and emotions are an integral part of the practice of Nia…Thank you for allowing us to witness your process.

    What an inspiring teacher Suz is!

  506. Letizia Accinelli on March 2, 2012 at 12:32 am

    I know exactly what you are saying Julie and how you are feeling. My father died in October and up to a few weeks ago every time I was dancing Nia and I was looking up I had tears in my eyes. I have tears in my eyes while I am writing now, but I let the tears come when hey want to. I feel better afterwards. I believe Nia and the Nia community played a big part in my dealing with grief . I never stopped dancing and the pocket of sunshine are getting bigger now.
    My father will always dance above me while I am juggling with the clouds!
    Love to you
    Letizia Accinelli

  507. Sophie Marsh on March 2, 2012 at 12:51 am

    I too feel gratitude for Nia and the beautiful community it creates. Permission to dance my truth, to dance my grief and my love. thank you for sharing your feelings so openly Remi. xxx

  508. mariaskinner on March 2, 2012 at 7:43 am

    Coming back to Nia always feels like coming home to me! Thanks for sharing your return?

  509. Ken Gilbert on March 2, 2012 at 9:39 am

    Juggling the Clouds and walking on earth; a great metaphor for health, fitness and well-being. To be in your Body/Mind/Emotion and Spirit. Thank you for sharing your Nia "initiation"!

  510. manicramblings on March 2, 2012 at 10:30 am

    OH WOW that is awesome! ^_^

  511. manicramblings on March 2, 2012 at 10:31 am

    Hehehe…. I am going to watching YouTube for vids! Have a wonderful time!!!

  512. Laurie Bass on March 2, 2012 at 12:55 pm

    Love that Nia has held the space for you to move, to grieve, to smile, to juggle, in your own way, your own time ~ this space has held me as well. (p.s. I'm the chick to the right of Suzy in the dance photo above;)))

  513. Debbie Rosas on March 2, 2012 at 1:42 pm

    I am so impressed with how the human spirit will not be kept down. Dance is something we do awake and when we sleep. It is The Body's Way to move energy. When you sleep, you are still dancing! Love Debbie Rosas Co-creator and founder of the Nia Technique.

  514. Yonit Lerner Ofan on March 2, 2012 at 2:51 pm

    Thank You Julie for sharing your story!
    Nia has changed my life 10 years ago. Nia makes me shine all day. Nia allowes me to be myself at any given moment. Nia taught me to love myself just the way I am, and I love it!
    Hugs & love,
    Yonit, Nia White Belt Trainer

  515. Yonit Lerner Ofan on March 2, 2012 at 2:55 pm

    Thank You Julie for sharing your story.
    Nia has changed my life 10 years ago. Nia makes me shine everyday. Nia allows me to be myself, express, heal and condition my body & soul.Nia taught me to love myself just the way I am, and I love it.
    Love,
    Yonit Lerner Ofan
    Nia White Belt Trainer

  516. Anonymous on March 2, 2012 at 3:58 pm

    this is great. Nia is so much more than just an exercise class !!

  517. Ann Christiansen on March 3, 2012 at 2:07 am

    Thank you for sharing. I can feel with you through your words and recordnize much of what you say- Yes Dance transforms, Yes Nia holds space for all emotions and through movement the body will transform itself , the chemistry of universal Joy spreading a sense of wellbeing and giving back the ability to smile.Even when it is for a brief moment and through tears. much love Ann

  518. Gail on March 3, 2012 at 1:41 pm

    Great idea! I can't wait to be off my ideal protein diet to add back sweet potatoes into my diet. For some reason I always reserved them for thanksgiving.

  519. Caroline Kohles on March 3, 2012 at 4:20 pm

    I am so sorry for your loss. My heart goes out to you. I can't say that I know exactly how you feel because grief is so personal, but having lost someone near and dear to me recently I do know what it is like to get back into class after feeling so shocked and numb and stricken by grief.
    As a Nia student, teacher and trainer I can tell you that Nia has helped me through some really tough times. I am a New Yorker and was in NYC on 9/11. My boss told me I didn't have to teach my Nia class when we heard the news that the towers had been hit. I looked at my class and told them the only thing I could think of to do at that moment was to dance Nia and pray. I taught the Nia routine Global Unity. When we finished the class we all stood in a circle and held hands for a moment in silence and then we bravely left the classroom to listen to the news. It was then that we learned the towers had fallen. We looked at each other crestfallen but determined to help our city heal. It was a very powerful experience to not have to teach an exercise class that was supposed to "make everyone happy" but instead allowed everyone to feel whatever then needed to feel that day and in the weeks and months that followed. As my city came to grips with the 9/11 tragedy I taugh my classes. In them we both celebrated life and mourned the senseless loss of so many. I was grateful that Nia allowed me to be "real" and that as a result my students and I had a place to express our all of our emotions through our bodies. Nia is a beautiful practice so keep dancing girl. Maybe one day you and I will meet on the dance floor. I look forward to that. Many Blessings, Caroline Kohles Nia Education Faculty, NYC

  520. manicramblings on March 5, 2012 at 11:16 pm

    Wow we both had busy weekends! So much information! I love the Dolphin story! I can use that next week to share with the kids at the PJ party! Thank you! You are always so inspiring!
    ~ Marcia

    ( I don't think I have ever used so many exclamation points before but I meant very one of them! ^_^ )

  521. Martha Randall on March 6, 2012 at 10:34 am

    THank you for sharing your beautiful story. As a Nia teacher and trainer for 15 years, I too have seen and experienced the magic of stepping in to class for healing. One student this week is awaiting results on tests and wasn't sure she could come to class and move. She then realized that even if she sat on the sidelines, the spirit of community, music, movement would support her. She is welcome here. We are all welcome here! Martha Randall, Nia Training Faculty, Toronto Canada

  522. Melissa on March 6, 2012 at 2:23 pm

    Such creative posters! Well done!

  523. Melissa on March 6, 2012 at 2:25 pm

    Thanks for reminding us to savor life's simple pleasures.

  524. Melissa on March 6, 2012 at 2:26 pm

    Yummy! Do sweet potato fries count? 😉

  525. Anonymous on March 7, 2012 at 9:22 am

    one of the best articles I have seen…thanks for posting Julie. Kim Grady

  526. Kelle Rae Oien on March 12, 2012 at 5:43 pm

    Thank you for your honesty and willingness to be vulnerable. Stepping into a Nia class with ALL of who we are can take a lot of personal power. As we've all seen. It is worth it though. Movement heals!
    Love, Kelle
    Santa Fe, NM

  527. manicramblings on March 13, 2012 at 12:14 am

    Congratulations on seeing your dream become such an incredible success so quickly! I am really proud of you!

  528. Anonymous on March 13, 2012 at 9:22 am

    Julie, it was an honor to be involved is such an important event. Thank you for always being so positive. You are always so optimistic and it really helped my son to be around you this weekend. Thank you for being YOU!

  529. pha on March 13, 2012 at 9:37 am

    What a success on what looks like a beautiful day! Congratulations Julie and all involved in the Sleep Walk.

  530. The Dreamer on March 13, 2012 at 9:38 am

    Hmmm, I might have to plan to travel to one some time….

  531. Anonymous on March 13, 2012 at 11:53 am

    I had so much fun on the walk! I'm looking forward to doing it again next year!!

  532. Anonymous on March 15, 2012 at 9:06 pm

    Already looking forward to next year! You did a fabulous ob organizing and keeping us all focused. It was wonderful meeting and talking with everyone. You are doing a fantastic job of raising awareness of Narcolepsy!

  533. Mali Einen - Center for Narcolepsy on March 20, 2012 at 3:10 pm

    What fun! Wish I had been there! Congratulations to all

  534. Life on Pause on March 21, 2012 at 11:30 pm

    Truth be told? Terrified, deathly, of public speaking. If I don't keep my hands moving or clasped, the audience can see them shaking. If I don't have water near, I can't speak because my mouth gets so dry. By the time I'm finished, I have a migraine. And what does everyone say? "You were fantastic!" "That was SO great!" "You were so well spoken, so informative." Confidence is ABSOLUTELY key. Doesn't make me feel better, though.

  535. Gail on March 22, 2012 at 11:32 am

    Julie,
    You are truly an inspiration while walking through thunderstorms you dance in the rain. Facing and overcoming your fears is what life is all about and you do it with style and humor. Bon Chance Saturday and next week. The best way to prepare is practice.

  536. dawn collins on March 22, 2012 at 3:12 pm

    Wow until about a week ago I wasn't able fo find anyone to talk to about narcolepsy. If feels so awesome to know that I'm not on board alone. I loved the article.

  537. Anonymous on March 22, 2012 at 8:33 pm

    Great post Julie! Thank you

  538. REM Runner on March 22, 2012 at 10:24 pm

    Hi Dawn, So glad you've found my blog! You are certainly not alone. Thanks for your comment. Please stay in touch!

  539. Gail on March 23, 2012 at 10:49 am

    Let me know if you get a spot. I will be a sponsor. Wonderful way to honor your father

  540. Anonymous on March 23, 2012 at 1:09 pm

    I really enjoyed this blog Julie…I love your writing style! Thank you!

  541. Anonymous on March 23, 2012 at 2:06 pm

    Oh Julie, I really, really hope you get a spot in the race! I have a feeling it will somehow work out. Perhaps you should post something on any Craigslists in NH with the hope that someone would turn over their spot to you? — Kerry

  542. Gail on March 24, 2012 at 9:20 am

    Great photo!!

  543. Anonymous on March 25, 2012 at 3:24 pm

    Unfortunately numbers are not transferable, in fact they expect there to be a lot of no shows. If you run somebody's number, they'll disqualify you and ban both from future races.

    Hopefully, they can be convinced to let you in for a good cause.

  544. debralavalley on March 27, 2012 at 4:39 pm

    Hi Julie,
    I work at Northeast Delta Dental and saw your dad's tweet about you wishing to run the Mount Washington Road Race in his honor. I brought it to our CEO's (Tom Raffio)attention. He will be contacting you in the next day or two.
    Debbie LaValley 🙂

  545. REM Runner on March 27, 2012 at 4:44 pm

    Thank you so much, Debbie!! This is exciting news!!

  546. debralavalley on March 27, 2012 at 6:39 pm

    You're welcome, Julie. Sorry about saying it was your dad's tweet. I was a little confused – half reading …it was @LawrenceChen's tweet. Sorry about your dad's passing. I wish you well and was glad to bring it to Tom's attention. BTW – he has ran the race the past 2 years, I think. He is an avid runner. Take care! Debbie 🙂

  547. Anonymous on March 28, 2012 at 2:45 pm

    I love that quote! It is so easy to get wrapped up and forget how much joy there is to be had in this short life we are given.. Thanks for the reminder.. and please find me to share that glass of wine with you.. 🙂
    Much Love
    NS

  548. Amelia Swabb on March 29, 2012 at 10:29 am

    can't wait to read your book!

  549. Anonymous on March 29, 2012 at 1:02 pm

    That's awesome, Julie!

    I was diagnosed with narcolepsy last week and am glad that I found your blog.

    I think it's great that you decided not to practice law and follow your lifelong passion of writing (mine too!), but I have to ask…what do you do for health insurance? I have a couple autoimmune disease, and not working full-time is not an option.

  550. Heather on March 29, 2012 at 3:41 pm

    Congratulations, Julie! This is a huge milestone in your life!

  551. pha on April 2, 2012 at 11:03 am

    Wow Jules – You really completed a massive goal! I'm so proud of you.

  552. Life on Pause on April 2, 2012 at 7:55 pm

    You are an absolute inspiration of mine. Trapeze and Cataplexy….doesn't that just sound like a big fat NO? But you did it. It's possible. It can be done. Maybe I can do it too?

  553. Rachel on April 3, 2012 at 8:50 am

    I see you just started this site and I think it's great. So great to see a current site about Narcolepsy. Unknowingly I had Narcolepsy for many years before my diagnosis, which was about 16 years ago. Just the other day I was thinking of starting a similar website myself. Although they have come a long way with understanding the disorder, there is still so much that is not know. It's good to be able to read what others that have it have to say about it. I found your site while I was researching the whether the condition typically worsens over time or with certain events. I seem to be having a bad bout with it lately and was trying to determine why.
    By the way great article from the New York Times, thanks so much for posting….

  554. pha on April 3, 2012 at 9:34 am

    you are so adorable!!!

  555. Anonymous on April 3, 2012 at 9:38 am

    So, what's the news?

  556. Meatloaf on April 3, 2012 at 12:41 pm

    Go Jules GO!!!!!!!!!

  557. REM Runner on April 3, 2012 at 12:58 pm

    Thanks for keeping up with my progress! Check out my latest post for the full update: http://remrunner.blogspot.com/2012/04/legs-on-fire-starting-my-training-for.html.

  558. Gail on April 3, 2012 at 4:17 pm

    You are a trooper! Keep icing and rolling. Proud of you!!

  559. The Dreamer on April 4, 2012 at 11:38 am

    This is good news… Now to save up….

  560. Anonymous on April 4, 2012 at 1:01 pm

    Cheering you on from boston!
    Rebecca

  561. debralavalley on April 6, 2012 at 11:07 am

    Good luck in your training! I am glad that we at Northeast Delta Dental could help you out. Have a great day! Debbie 🙂

  562. Rann on April 8, 2012 at 10:49 pm

    Thank you for your openness about narcolepsy. I was just diagnosed with narcolepsy last month after meeting with a sleep dr. In Boston and having a sleep study (day and night) . I have had this for almost 30 years. At first I was relieved and felt validated, but now I am feeling angry with all the struggles I have had due to this and the fact that there is not a cure.

  563. Julie on April 10, 2012 at 6:09 pm

    I was so excited when I saw this article last Wednesday. I was on Yahoo News looking for an article for my current events class and on the first page of the Health section, saw TWO article listings with your name on it! I literally was so excited for you and for the narcolepsy name in general that I actually started to cry a little in the middle of school. It was just amazing to think of how many people you were suddenly reaching in the world! You are always an inspiration to me <3
    -Julie (the OTHER one)

  564. Vanessa on April 11, 2012 at 2:17 am

    I do not have cataplexy but I still felt like I was watching myself when I watched Katy off her medications. I also am not surprised that they did not show anyone who was effectively taking their medication because honestly that is what happens with most of us. At least I know I've been diagnosed for about 6-7 years and still have not found the best medication regime. My physician, who is 5th physician after trying to find someone who could figure out my issues, is really trying to find the best solution but it still hasn't happened. I think the show was very realistic. I could relate with wanting to be normal and figuring out ways to not have to take medicine like Julie, and having family members worried about your meds and beg you to stop like Katy. It's so difficult for other people to understand why medicine is necessary to us that the side effects or risks are worth it; at least to me it is!

    If you have any particular tips you found helpful please let me know if you have a previous post on it. I feel like I have tried everything and can't figure out anything that helps.

    Oh and I should mention I have idiopathic hypersomnia. I really wish MTV displayed this because most of my friends either think of Sleep Apnea or Narcolepsy (the narcolpetic dog in particular); so it's difficult for them to comprehend the differences, especially when they imagine of all sleep disorders is either falling asleep into your bowl of soup or falling like cataplexy. Since I fit neither criteria I'm perceived to have a "mild" form- I wish that was the case. I wish I had another solution other than taking 9 pills a day! (My apologies for typos but it's past my bedtime!)

  565. The Dreamer on April 11, 2012 at 9:46 am

    good vibes here for you….

  566. NarcoGirl on April 11, 2012 at 10:42 am

    Just keep up the good work-you know you've got this!

  567. Heather on April 11, 2012 at 6:11 pm

    Keep going!

    Training for this race, finishing the memoire, giving trapezing a shot, organizing the Sleep Walk, etc, etc…you're doing such big things! We're rooting for you!

  568. Narcaplexy on April 15, 2012 at 11:56 pm

    Energy, vibes, prayers, thoughts, encouragements, support, cheers… A little bit of positive everything heading your way! You're an amazing inspiration with everything you do, Julie, and I know this will be another one of your fabulous accomplishments. And I'm just one of the very many that are and will always be cheering you on 🙂

  569. Anonymous on April 19, 2012 at 8:54 pm

    Yeah, Julie, great job. Glad it went well. Having been on the medical student side of things in the past, the conditions you remember the most are those presented by those who actually have the condition. I hope that everyone in the audience last night will long remember your presentation and use the information to diagnose someone with narcolepsy in the future.
    Mark Patterson

  570. Gail on April 20, 2012 at 10:01 am

    Wow! Thank you for sharing the road you have traveled and the difference in approach to discussing the disease now versus four years ago. Accepting and understanding is liberating. So proud to call you my friend.
    Gail

  571. Unell Hussey on April 22, 2012 at 6:14 pm

    So glad you got a chance to pitch your book. I do believe that God and your Dad are in heaven "pitching" for you too. Love, Unell

  572. Michelle Stewart on April 23, 2012 at 3:54 pm

    You rock Julie, that's awesome! Thanks for being our brave voice 🙂 Michelle Stewart

  573. Ellen on April 25, 2012 at 1:57 am

    While searching my xm stations this morning for something to listen to on the way home from work ( 12 hour night shift), I stumbled upon the radion show and sat mesmerized. I was diagnosed with narcolepsy (without cataplexy) approximately 6 years ago. I also have suffered with what I thought were night terrors, but sounded very much like the dreams that were described on the show. Paralasys, feeling like you can’t wake up and cant escape…very frightening. When I stopped taking Ambien at night (seems like that is the only time I sometimes have problems sleeping, the terrors seems to stop. I have not had one in a while.

    I take Adderall XR when I feel like I absolutely have to, but do not like to take it because when I stop, I “crash”. I take 10mg twice a day if needed. Other times if I can, I just sleep. Anyway, I was diagnosed after two sleep studies one during the day after sleeping an entire night, and the other at night after. Apparently, I went into REM every time I was told to go to sleep. Thus my diagnosis. I would like to have more information. People just don’t get it. Anyway, just wanted to tell you that I enjoyed the show.

  574. […] Press […]



  575. Narcogirl on April 25, 2012 at 2:42 pm

    Hey Julie-do you ever rest?! lol-good for you lady. Can’t wait until I can get home and listen to your interview (I’m supposed to be at work..ha!)

    Keep up the great work!

    Helen

    • julie on April 25, 2012 at 4:12 pm

      Hey Helen: Funny you should ask! I didn’t get much sleep the night before my interview – but it was well worth it! I promise to get my full 8 hours the rest of the week. 🙂 Thanks for listening! Sending wakefulness from DC, Julie

  576. Narcogirl on April 25, 2012 at 2:45 pm

    ps-I just pinned your blog to my Narcolepsy board on Pinterest…..

  577. Nicole on April 26, 2012 at 12:57 am

    Julie,

    You are so brilliant and brave. As “the Broads” said, you are such a “badass!” Congratulations on such an educational and entertaining interview. I always appreciate your ability and willingness to explain (and re-explain) your symptoms, the science behind narcolepsy, and why the stereotypes are flat wrong. Thanks so much for sharing.

    What an inspiration you are. I’m going to listen to you again right now!

    Nicole

  578. rebecca on April 26, 2012 at 1:58 am

    I’m pitching for you too, as are all those who know and love you! Go Julie!

  579. Julie F. on April 26, 2012 at 9:46 pm

    Julie,
    I unfortunately missed the interview and I wanted to hear it so badly. So, glad you posted it here and can’t wait to listen. You inspire me so much and I always think if that Julie F. can do it, then certainly this Julie F. can try!

    Thank you for getting the word out about Narcolepsy and Cataplexy. Keep it up and best wishes.

    Julie

  580. […] tennis, squash, and ping-pong. I’m a much more humble runner, as I said in a prior post – I see myself as an average runner (not the gazelle-type). But for some reason, things got out of hand between Freddy and I – words were spoken, and […]

  581. Why Not Today. on April 30, 2012 at 2:36 am

    […] In an earlier post, I promised that I would be more honest about how narcolepsy affects my training.  I wrote, “I realize that I haven’t blogged much about these complications, subconsciously glossing over the difficulties to focus more on the fun and positive parts of this journey. I hope to open up a bit more in the months ahead to give a more honest portrayal of this experience.” So here’s my first attempt to shed some light on my own darkness: […]

  582. Running into Narcolepsy (Part II) on April 30, 2012 at 2:46 am

    […] by julie on February 22, 2010 (Note to reader: This is a continuation of my last blog post. To read Part I, click here.) […]

  583. As fast as a Kenyan… on April 30, 2012 at 2:48 am

    […] you might remember my “rivalry” with the Kenyans for Boston 2010 (I wrote about the rivalry here). Thank you to those that believed in me and said you’d be cheering for me over the Kenyans. […]

  584. Under Dark Ominous Clouds on April 30, 2012 at 2:59 am

    […] 30 minute walk/run.   A month ago, I could have run 30 minutes in my sleep. As I wrote in a previous post, these shorter runs became “a comforting and stress-relieving part of my winter routine.” […]

  585. What’s Sleep Got to Do With It? on April 30, 2012 at 3:02 am

    […] fascinating example of disassociated REM sleep is the symptom of “cataplexy.” As mentioned in a previous post, there are times when I cannot make it from one side of the room to the other without collapsing to […]

  586. REMRunner in the News on April 30, 2012 at 3:05 am

    […] From Where I StandDangerous LaughterWhy Not Today […]

  587. In Retrospect & Call for Submissions on May 1, 2012 at 2:07 am

    […] – I already struggle to stay hydrated, never mind hydrating for long-distance runs.” (From Decisions Decisions, January 26, […]

  588. […] Click here to read Adventures of the Sleepy Yogi Part I: Meeting the Double PigeonClick here to read Adventures of the Sleepy Yogi Part II: From Hallucinations to Inner Peace /* […]

  589. […] Click here to read Adventures of the Sleepy Yogi Part I: Meeting the Double Pigeon. […]

  590. From Heartbreak Hill to Capitol Hill on May 1, 2012 at 3:08 am

    […] I will be sure to report back here afterwards! Until then,REMRunner […]

  591. Superman Saves My Day on May 1, 2012 at 3:12 am

    […] first half of the run was euphoric (as detailed in my last blog post).  I ran past marble monuments, along grassy trails, into a pink sunset.  However, I was so taken […]

  592. […] Last June, I worked with Wake Up Narcolepsy (WUN) in preparing and submitting it’s official response to the NIH’s RFI.  In August, I attended the SDRAB’s public meeting and had the honor of speaking before the Board on behalf of WUN, detailing what our organization feels are important priorities for the progress of sleep disorders research. (Read more about this experience here.) […]

  593. When Motivation Isn’t For Sale (Part II) on May 1, 2012 at 6:57 pm

    […] julie on November 22, 2011 As previously noted, motivation doesn’t grow on trees.  It’s not for sale either – not even at […]

  594. The F Word on May 1, 2012 at 7:14 pm

    […] a previous post, I offer a few basic communication guidelines:1. Keep an upbeat tone2. Leave out big science-y […]

  595. From His Heart to Ours on May 1, 2012 at 7:16 pm

    […] got to ride;Ride like the wind;To be free again.     Please read:  Those That Carry Us Flygare Remembered As A True Friend Thomas John Flygare Obituary […]

  596. Debbie on May 4, 2012 at 5:44 pm

    Nice entry – and so very true! Have a great day!

  597. Marcia on May 4, 2012 at 9:11 pm

    Aaahhhhhh Julie. You are so awesome. You know just how to really say it.

    “Don’t ask for approval. Repressed Dreamers lurk everywhere and they’ll try to convince you that your dreams are impossible, just like theirs. Your pursuit threatens them. ”

    Brilliant.

    <3

  598. TheDreamer on May 12, 2012 at 3:25 pm

    Wow, what great pictures.

    Looking forward to more, and putting money to the cause….

    • julie on May 13, 2012 at 4:07 am

      Thank you so much, Dreamer! Your support means so much to me. Sending wakefulness and smiles your way, Julie (aka the REM Runner)

  599. Hopefully Awake on May 14, 2012 at 2:25 am

    Julie Great Job and Keep it up, you are so inspirational to all of us!!
    Good Luck in your Race!!

    Hopefully Awake

  600. […] moment when you find words that accurately describe your experiences. I remember mine […]

  601. Debbie on May 15, 2012 at 1:17 pm

    You have more motivation that I have – I am impressed with your determination! Keep up the great work – you are an inspiration!

  602. unell hobbs on May 21, 2012 at 2:32 am

    Can anybody go to this? Unell

  603. julie on May 21, 2012 at 5:56 pm

    Great question – Unell! Yes, I believe it is open to the public. I’d suggest getting there very early to get through security. Congressman Michael Honda’s office may have more details. Thank you, Julie (aka the REM Runner)

  604. Mark Patterson on May 23, 2012 at 1:00 am

    Good luck Julie.
    I know you have the passion to achieve your goals. Melissa, Deborah, and I will be there in spirit to help you on your way to the top of Mt. Washington.
    Mark

  605. rebecca on May 23, 2012 at 1:23 pm

    Good luck as you meet and greet your edge, all the way up, up, up!

  606. Narcogirl on May 23, 2012 at 1:39 pm

    LOL…Don’t forget the mothers who ARE narcoleptic 😉

  607. Narcogirl on May 23, 2012 at 1:58 pm

    You know, Julie, I’m glad you wrote this. Just speaking for myself, a lot of times it’s easy to see those who accomplish much as having some unattainable special power or something that makes them impervious to fear to the point that we look at them and think, “I could never do that”. Its good to hear someone who has accomplished much admit to feeling fearful or apprehensive, etc. For me, it kind of says, ‘you can do it-being scared doesn’t make you less able’. I love the quote you posted….very cool. ….

  608. Amanda on May 23, 2012 at 4:57 pm

    Good luck Julie – you’re dad will help you stay away from the edge! Thanks for this quote – it reminded me that I shouldn’t always compare myself to others (a sore spot with me lately as a new mom!!) xo

  609. kate on May 24, 2012 at 4:01 pm

    Hey congrats on bib #! Good story, good cause, good luck! @kitchentabledoc

  610. Lawrence Chen on May 28, 2012 at 10:04 pm

    Go Julie!

    • julie on May 28, 2012 at 10:10 pm

      Thank you, Lawrence! You played an important piece in making this all possible. During tough moments, I may not be so “thankful” for this grueling adventure, but in the end – I will be forever grateful for this opportunity and for your on-going support!! 🙂

  611. tricia on May 29, 2012 at 9:20 pm

    Way to go Julie! I wish I could have been there to shoulder some of the cataplexy.

    • julie on May 31, 2012 at 10:13 pm

      Thank you, Tricia! Your on-going support means the world to me.

  612. Trinity on May 30, 2012 at 7:41 am

    I second Tricia’s comment! Noone else I would rather see out there, representing all of us and educating people. So proud to be your friend!

    • julie on May 31, 2012 at 10:12 pm

      Thank you, Trinity! Your positive attitude is an inspiration to me!

  613. Saraiah on May 31, 2012 at 2:00 am

    Letting go often opens up possibilities that I can’t even see when I’m determined to achieve a particular outcome. When you run, we people with narcolepsy run right there with you. Thanks for running for all of us!

    • julie on May 31, 2012 at 10:10 pm

      Thank you so much, Saraiah! Thank you for reminding me that people with narcolepsy are there with me and supporting my efforts. I’m proud and honored to be raising funds for research and attempting to break down barriers for all people with narcolepsy. Cheers, Julie

  614. Jill on May 31, 2012 at 2:28 pm

    Hi Julie,

    How ironic. The day I read this I was hit hard with EDS and it didn’t let up all. By the time I could leave work, I was struggling to hold my head up. So needless to say, I missed my run entirely. Which is scary as I’m running a full marathon in about three weeks.

    I could relate to your post as there has been several times I haven’t felt good on a run and all I had to do was slow down for awhile. You’re right, it often passes and before you know it you’re done! You’ve quit quitting. (I love your phrase and plan to use that a lot!) 🙂

    Keep on keeping on! 🙂

    • julie on May 31, 2012 at 10:08 pm

      Thank you so much for your comment, Jill! Your determination to keep going despite EDS to run marathons is amazing and inspirational! We will just keep going on and on with what each day presents. With gratitude and smiles, Julie

  615. Debbie on May 31, 2012 at 6:23 pm

    Very enjoyable entry! Best wishes on your adventure! Have a great day!

    • julie on May 31, 2012 at 10:14 pm

      Thank you, Debbie. I had so much fun exploring the history of Mount Washington. I can’t wait for race day! Your support means so much to me. With gratitude, Julie

  616. Debbie on May 31, 2012 at 6:26 pm

    🙂 You are one busy lady! It sounds like it was a great experience! Keep up your good works!

    • julie on May 31, 2012 at 10:14 pm

      Thank you, Debbie! I like to keep myself busy. It was a wonderful experience. As much as I love the Northeast, I met some really amazing people in the South! 🙂

  617. Keith on June 2, 2012 at 12:52 pm

    Can I read a transcript of your speech? I’m sure it was eye opening! Congrats as always!

    • julie on June 2, 2012 at 1:25 pm

      Thank you for your comment, Keith. Unfortunately, I don’t have a transcipt, just an outline. Most came from my memoir, which I hope will be available soon!

  618. […] 31st at 2pm. It was a packed house with standing room only for the Congressional Briefing on the NIH Sleep Disorders Research Plan. Congressional staffers, patient advocates and sleep researchers were all in […]

  619. […] 31st at 2pm. It was a packed house with standing room only for the Congressional Briefing on the NIH Sleep Disorders Research Plan. Congressional staffers, patient advocates and sleep researchers were all in […]

  620. Lelia on June 3, 2012 at 2:51 am

    Julie-

    YOU GO GIRL!! Just when I think you can’t amaze me anymore, you prove me wrong!! You will do awesome because you are awesome!! (and because you have heart and passion) I am so proud of you and even though I may not have ever met you or your father, I have no doubts in my mind that he will send you wings and be by your side every step of the way. I wish you luck, even though you don’t need any.

    Thanks for all you do,

    Lelia

    • julie on June 3, 2012 at 3:14 am

      Thank you, Lelia! Your support means so much to me and thank you for these nice thoughts about my Dad being my side. I need ALL the luck I can get too!! With smiles and gratitude, Julie

  621. Patricia Higgins on June 3, 2012 at 3:56 am

    I wish I could have been there. I had an important meeting on Thursday to attend here in NJ.

    I am flying to Shanghai to see my son and his new bride to be in one week and I am feeling the joy.

    My hope is that you are well and happy.

    • julie on June 4, 2012 at 6:43 pm

      Thank you, Tricia! It was a great event. Safe travels! -Julie

  622. Christina on June 9, 2012 at 7:58 am

    Dear Julie, long ago, your father was a mentor to me when I was working in the field of Higher Ed Law. After I heard him speak at a seminar, I confronted him to question his view on some arcane point. At the time I was staggering through the grief of having lost my father, following a three year battle with a recurrence of lung cancer. My father departed a week after his 66th birthday; your father departed soon after his 67th birthday. I weep for you.

  623. Joe Jokubaitis on June 9, 2012 at 3:17 pm

    Your blog came up as I googled “Mt. Washington road race taper”. I’m doing the race also and am confused as to what my final week should entail – as far as training goes. Well it seems like nothing can quite prepare us for this race, so as they say, just remember “perpetual forward motion”.
    I’ll say Hi if I recognize you and GL.

  624. Roanoke Valley Awakens to Narcolepsy on June 10, 2012 at 2:36 am

    […] more on Haven’s story, click here. […]

  625. rebecca on June 10, 2012 at 1:20 pm

    Good luck Julie! I wish you the best as you head into the final stretch leading up
    the mountain. Your dad would be so proud!

    • julie on June 10, 2012 at 2:31 pm

      Thank you, Rebecca! Your support means so much to me. 🙂

  626. Gail Pean on June 10, 2012 at 4:45 pm

    Julie,
    “I get up, I fall down, but I get up again”. Great lyrics to a song. You are every day reinventing yourself and designing your road ahead. Congrats on taking on this challenge knowing only some of the obstacles and ready to discover new ones. Your flexibility and tenacity are amongst your best qualities.

    • julie on June 10, 2012 at 4:50 pm

      Thank you, Gail!! I will just keep getting up, reinventing and re-designing the road ahead. Thank you for sharing in my adventure.

  627. Christina on June 11, 2012 at 2:36 am

    Dear Julie,
    Wearing that irrepressible grin, your father would cheer with you to the end of your run. He would burst with pride over the fact that during these months of grief you’ve set Mount Washington as your goal, in an effort to BEND the illness and your loss, into a triumph of will. You’ve mounted a campaign to train for the event. He KNOWS that completion of the goal may not be possible but NOT because of a “failure” on your part.

    Along with self-doubt, you speak of exhaustion. I discovered eminently sensible words written to your father in 2007 when he noted frustration over his body “betraying” him so he couldn’t work out the way he had in the past:
    “Dear Tom, It’s FRIDAY [ 2/2/07, 1:24 pm], of course you’re going to feel tired (therefore “old”). Cut yourself some slack. Leave the office. Walk to the library. Get a book about something that you’d find fun to do. Plan….”

    So, my dear, to echo that sage woman-author of those words: Cut yourself some slack. You contradict those who call you brave, claiming that your fear prevents such an adjective from being applicable to your circumstances. On the contrary, you ARE brave. You persist despite fear. Your example shows us courage.

    Lurking at the back of your mind is the realization that external factors may stymie your goal. Just remember, being prudent- being the “reasonably prudent person”- governs. The ability to recognize it and not let ego reign uncontrollably may be the ultimate bravery. Your father would tell you so, too; I am nearly certain of that. With abiding admiration and deep affection,
    Christina, Retired Attorney at Law

  628. Christina on June 11, 2012 at 2:39 am

    ps. Contrary to what the internet system noted, I wrote the above at 10:37 p.m. DST on Sunday, June 10, 11 days from the Summer Solstice. On that note, I shall close the laptop!

    • julie on June 11, 2012 at 2:03 pm

      Thank you so much, Christina. Your support and wise words are much appreciated!! You are so right: “In an effort to BEND the illness and your loss, into a triumph of will.” Sending smiles and gratitude from DC, Julie

  629. JJM on June 11, 2012 at 2:25 pm

    Hi,
    I learned about your blog while at the narcolepsy meeting at Mass general this weekend. I too often find every step a struggle, but once in a while I get past it and ride the wave. Its great to feel empowered, to fly past the struggle if just for a little while. Its a reminder that all things ebb and flow.
    Best of luck on your run/climb!

    • julie on June 11, 2012 at 3:25 pm

      Hi JJM: I’m so glad you heard about my blog at the Mass general meeting. I wish I could have been there! Sounds like you have a great perspective on the ebb and flow. Keep your head up. You’re overcoming incredible adversity and you should feel very proud. Sending wakefulness and smiles from DC, Julie

  630. JJM on June 11, 2012 at 2:30 pm

    Bravery is only possible in the face of fear. Not letting the fear stop you is what being brave is all about.

    Best of luck!

    • julie on June 11, 2012 at 3:21 pm

      Thank you, JJM! I don’t always feel brave, but I suppose moving on despite feelng scared… is bravery. I used to think bravery meant you had no fear. Great point! 🙂

  631. Debbie on June 11, 2012 at 7:33 pm

    Best of Luck, Julie! Remember – if you can’t run – it is ok to walk 🙂 I will pray for perfect weather (not to cold and not to hot)! I can’t wait to read of your experience up the Mount Washington! Have a great week!

  632. […] julie on June 14, 2012 An upcoming insomnia medication, Suvorexant develped from our understanding of narcolepsy. At SLEEP 2012 Conference today, Merck announced results for additional clinical trials – […]

  633. Jill on June 15, 2012 at 2:16 pm

    You got this Julie. Your Dad’s spirit will be pushing you up that hill! You’ve trained hard. That hill is yours!

    Oh, and don’t forget to have a little fun while you you’re at it! 🙂

  634. Debbie on June 15, 2012 at 2:30 pm

    You got it – I will be sending tons of positive energy and will do my morning Healing Mantra in your honor! Good luck!

  635. […] more communication techniques: I am a Person With Narcolepsy and I’m Proud, The Pause and Nod and The F-word. Please read more about AWAKEN in the Press […]

  636. […] more communication techniques: I am a Person With Narcolepsy and I’m Proud, The Pause and Nod and The F-word. Please read more about AWAKEN in the Press […]

  637. Michelle on June 15, 2012 at 7:35 pm

    Julie, you make PWN so proud, you go girl!

  638. Sleep Problems on June 18, 2012 at 5:53 am

    Sometimes, a lot of people are taking sleep for granted. Not because we don’t feel sleepy and we can still keep ourselves awake doesn’t mean we can stay awake as long as we want to. Definitely not! Skipping sleep or not getting enough sleep everyday may lead to a very serious situation, health situation that we are not aware of. As early as possible, we should practice proper sleep and rest so every morning we wake up we do not feel tired or sick. There are many benefits of sleep that we don’t know we are missing.

  639. Debbie on June 18, 2012 at 1:56 pm

    I love the video! Glad the experience was all your dreamed it would be 🙂 Take care!

    • julie on June 18, 2012 at 4:19 pm

      Thank you, Debbie. You’re simply the best!! 🙂

  640. Lawrence Chen on June 18, 2012 at 2:29 pm

    She makes it look so easy….

    • julie on June 18, 2012 at 4:19 pm

      Thank you Lawrence! You are a big part of the reason I was able to take this adventure on! It was the most alive I’ve ever felt. Cheers, Julie

  641. Laura on June 18, 2012 at 4:17 pm

    You did it! Congratulations!!

    • julie on June 18, 2012 at 4:18 pm

      Thank you, Laura!

  642. Mark Patterson on June 18, 2012 at 5:04 pm

    Great video, Julie. Glad you did so well and were able to raise so much money of narcolepsy research. We are very proud of you! Plus, great soundtrack. 😉

    • julie on June 18, 2012 at 10:08 pm

      Thank you, Mark!! Your support means so much to me.

  643. Kerry on June 18, 2012 at 9:54 pm

    Julie,

    You inspire SO many people!! Wonderful job!

    • julie on June 18, 2012 at 10:08 pm

      Thank you, Kerry! I’m glad my journey can help others. That makes this all much more worth it! 🙂

  644. Chris Flygare on June 19, 2012 at 3:04 pm

    WOW JULIE, so proud of you! Dad must be too.

    • julie on June 19, 2012 at 4:20 pm

      Thank you, bro!! I think Dad would be amused. He always relished our athletic challenges and cheered us on to victory!

  645. Debbie on June 20, 2012 at 3:49 pm

    Fabulous post, Julie! You have a way with words and a way with dreams (you live them). Take care and best wishes!

    • julie on June 21, 2012 at 1:29 pm

      Thank you so much, Debbie. I do enjoy writing. 🙂

  646. Laura on June 20, 2012 at 4:22 pm

    Beautiful post. Congratulations on the run!

    • julie on June 21, 2012 at 1:29 pm

      Thank you so much, Laura!!

  647. Christine on June 21, 2012 at 12:19 pm

    Amazing post! completely agree with Debbie ~ you have an inspiring way with words! Super BIG Congrats!

    • julie on June 21, 2012 at 1:30 pm

      Thank you, Christine! It was a great run. I hope your husband’s half marathon went well too & you found a nice yoga studio in Philly. 🙂

  648. Chris Flygare on June 21, 2012 at 1:13 pm

    i hear there’s a race up mt. everest…interested?

    • julie on June 21, 2012 at 1:59 pm

      I’ll follow your lead!! 😉

  649. Gail Pean on June 21, 2012 at 1:40 pm

    ” To hold devastation in one hand and glory in the other was a strange handshake with real life.  ” Julie Flygare. Wonderful quote and post. You are so brilliant and a fabulous friend!

    • julie on June 21, 2012 at 1:58 pm

      Thank you so much, Gail! That was my favorite line of my writing too. Great minds think alike. 🙂 Love, Julie

  650. JJM on June 21, 2012 at 8:38 pm

    😀

  651. […] This preview highlights cataplexy, a symptom of narcolepsy when emotions (humor, annoyance, joy, anger) causes loss of muscle tone without loss of consciousness. The individual remains conscious and fully aware of their surroundings and can hear everything around them, but is unable to respond because their body is temporarily paralyzed.  I trust National Geographic Channel will clarify this common inaccurate misconception. To learn more, click here. […]



  652. Sheila Redpath on June 24, 2012 at 7:54 pm

    After many years of suffering with what I thought was extreme fatigue, plus a wierd occurence which I called ‘shut-downs’ it has been discovered by the one consultant who has realised that neither this, nor my other major condition are Psychosomatic, that I have actually got Narcolepsy as well as Mitochondrial Myopathy with respiratory deficiency!! Basically 2 fairly rare conditions after years of being told that I may have M.E/CFIDS & should see psychiatrists without delay!! I have found out that these ‘shutdowns’ are in fact Cataplexy & the falling asleep in mid conversation amongst other symptoms all add up to the one whole. I am in the UK & have not, as yet, found an association here that will provide support – on Facebook the only groups are all in the USA – surely there are other folk in the world with this condition? Help please!!! Thankyou.

  653. Gail Pean on June 25, 2012 at 1:28 pm

    Wonderful recommendations Julie! May I add one ? Prides Crossing by Peggy Franck in honor of the anniversary of Title IX. It is the life story of Eleonora Sears the first female athlete to master 19 sports and first woman to play on a mans Polo team, tennis champion, squash champion, swimming champion, hiker and so much more. A wonderful historical non-fiction which reads like a novel.

    • julie on July 3, 2012 at 5:02 pm

      Sounds like an inspiring book! Thank you for this recommendation, Gail. I look forward to reading this too! I’m half way through Island Practice and LOVING it. Big smiles, The REM Reader

  654. Lisa on June 26, 2012 at 2:11 am

    Shelia, this isn’t the exact right group for you, but I know there are UK members here, so it might be a place to start:

    http://www.facebook.com/groups/NarcolepsyKidsandParents/

  655. Heather on June 28, 2012 at 8:30 pm

    This post brought tears to my eyes. Beautifully written! I enjoyed the photos as well. I’m so happy that the weather cooperated and that you did not die. 🙂

    Congratulations on such an incredible feat!

    • julie on June 28, 2012 at 8:56 pm

      Thank you, Heather!! I’m still coming down from cloud 9. Sending smiles from DC, Julie

  656. Touching My Narcolepsy Memoir on July 2, 2012 at 5:00 pm

    […] on it – fast and furious! With so many cases being diagnosed worldwide in the wake of the H1N1 flu vaccine/epidemic, I believe time is of the […]

  657. Lawrence Chen on July 3, 2012 at 3:22 pm

    And, then onto my Kindle?

    • julie on July 3, 2012 at 3:23 pm

      Oh yes, then your kindle! 😉

  658. […] communication techniques: I am a Person With Narcolepsy and I’m Proud, The Pause and Nod and The F-word. Please read more about AWAKEN in the Press […]

  659. rebecca on July 3, 2012 at 5:29 pm

    This is great news. Your book is on the way! Can’t wait to read it!

    • julie on July 6, 2012 at 3:59 pm

      Thank you so much, Rebecca! I can’t wait either. 🙂

  660. Gail Pean on July 3, 2012 at 6:25 pm

    I am so excited to read it!!! When can I place an order? I would like my book club to read it and have you as the guest author!

    • julie on July 3, 2012 at 8:44 pm

      I’d be so honored you’d like your book club to read it! Thank you, Julie

  661. Chelsea on July 3, 2012 at 8:01 pm

    Congratulations! What an accomplishment. Will you consider making an audio book for those of us with Narcolepsy that have a difficult time reading books?

    • julie on July 3, 2012 at 8:43 pm

      I love audio books! Great idea. Thank you, Chelsea!

  662. Laura on July 8, 2012 at 2:14 am

    This is great! I’ve kept a written journal since about age 11. I was a shy and reserved teen, so my journal was a really, really important outlet for me. I wrote pages and pages a day. I’ve been much less faithful a journal-writer since my late 20’s… but it’s corresponded with me finding my “outside voice,” if you will–being bolder about speaking up and letting myself be heard and throwing my opinions out into the world. I love the idea of adding visuals–I’ll have to give it a try sometime!

    • julie on July 8, 2012 at 5:52 pm

      Thank you, Laura! Written Jjurnaling is so therapeutic too. The visual elements are a fun addition. Let me know how it goes. Big smiles, Julie

  663. Chelsea on July 8, 2012 at 2:38 pm

    Julie,
    I love this idea! I can always count on your updates to motivate me, and now you’ve stepped it up a notch and spoken directly to my inner artist. I love paper art, but most things I create are for other people, the one thing I do for myself is scrapbooking. I hadn’t thought about how scrapbooking focuses on the past and how that may be impacting me emotionally. I’ve struggled with creating new goals for myself since my diagnosis 2 years ago, and just like you, I haven’t been allowing myself to “want things”. I can’t wait to start my art journal and begin envisioning the future I choose for myself.

    Thank you Julie!

    • julie on July 8, 2012 at 5:50 pm

      Hi Chelsea, Thank you so much for your nice comment! I’m thrilled that my adventures are motivating. If you like scrapbooking, you’re gonna love art journaling! Sending smiles from DC, Julie

  664. Dawn Herring on July 9, 2012 at 6:05 pm

    Julie,
    I loved the validating aspect of what you have shared here. It’s important that we value our time, taking time to refresh ourselves. You made an awesome point about art journaling, how it focuses on the present and future, like a dream board. I love the combination of color, text, and image of art journaling; I started my practice in 2011, and it amazes me how much I get from it. It adds to my energy and gives me a place to express my point of view visually. So glad it works for you so well.

    I have chosen your post, I Create; Therefore I Am, for the #JournalChat Pick of the Day on 7/9/12 for all things journaling on Twitter; I will post a link on Twitter, Facebook, LinkedIn, my blog and website Refresh with Dawn Herring, and in Refresh Journal, my weekly e-journal: http://tinyurl.com/bsycylk.

    #JournalChat Live is every Thursday, 5 EST/2 PST for all things journaling on Twitter; our topic this week is Your Journaling: Powerful Purpose.

    Thanks again for sharing your personal benefits of art journaling and taking time for yourself.

    Be refreshed,
    Dawn Herring
    Host of #JournalChat Live and Links Edition on Twitter
    Author of The Birthday Wall: Create a Collage to Celebrate Your Child

    • julie on July 9, 2012 at 6:12 pm

      Thank you so much, Dawn! I’m extremely honored to be featured in your online sources. You’ve made my day! With gratitude and smiles, Julie

  665. Christine on July 11, 2012 at 3:40 pm

    You can ABSOLUTELY do this! I was so afraid of headstand for many years…it just took one teacher to spend a few minutes with me after class….falling several times and realizing I won’t get hurt…and the realization that I was stronger than I realized. You’ve totally got this!!

    • julie on July 12, 2012 at 1:58 am

      Thank you, Christine! This makes me feel so much better. I’m excited to overcome my fears! Namaste, Julie

  666. TheDreamer on July 11, 2012 at 11:16 pm

    Hmmm, I just been thinking of getting an inversion table….

    • julie on July 12, 2012 at 1:56 am

      Cool! 🙂

  667. Debbie on July 12, 2012 at 8:32 pm

    Great job, Julie 🙂

  668. Debbie on July 12, 2012 at 8:34 pm

    🙂 Best of Luck with the headstand. For my inversion – I choose “legs up against the wall!”

    • julie on July 12, 2012 at 10:39 pm

      I love legs up the wall too!

  669. Debbie on July 12, 2012 at 8:37 pm

    Thanks for sharing and for your explanation. Very informative.

    • julie on July 12, 2012 at 10:39 pm

      Thanks for reading, Debbie! Cheers, Julie

  670. julie on July 12, 2012 at 10:40 pm

    Thank you, Debbie! Big smiles, Julie

  671. Heartbeats: Finding Mine Again on July 17, 2012 at 5:28 pm

    […] say that I always knew his heart would stop and mine would feel torn out simultaneously,” I wrote.  This torn-out heart feeling still overwhelms me at times and last Sunday was one of those […]

  672. laura j. evert on July 18, 2012 at 10:14 pm

    before i die… i want to stay in love.

  673. Michelle on July 19, 2012 at 8:11 am

    Reading this post brought tears to my eyes. For the first time there is someone who has put in word what I have to endure daily. I am at my wits end. I have no control over my body or my head.
    Thank you for letting me see light.

  674. […] replace negative self-talk): I’ve picked up mine from yoga classes and books. Many are in my art journal. I also downloaded MyThoughts+ app and love […]

  675. […] 5. Difficulty is difficult, but not pointless: In our society, “challenges” are viewed as bad things, something we’d rather hide from, naturally – because they hurt. For me, I try to view my challenges as reminders not to take my healthier times for granted. More on this here. […]

  676. Kim on July 30, 2012 at 8:22 pm

    Want to thank you for that description. I have very similar dreams and was recently diagnosed with Narcolepsy. I guess you could say I am still in the denial stage but your blog is really helping me to understand.

    • julie on August 1, 2012 at 1:56 pm

      Hi Kim, Thank you so much for your comment. I’m so sorry to hear you were recently diagnosed with narcolepsy. It’s good to find shared experiences. Plesae know you are not alone – we have a supportive community. Thanks for following my blog! Sending wakefulness your way, Julie

  677. Laura on August 1, 2012 at 12:54 am

    “There’s no cycle to break!” Brilliant! Thanks for that–I needed to hear that.

    Love #5. I had an epiphany a few years ago–after spending lots of time feeling sorry for myself and wondering when I would get my act together so that things would finally start going the way I wanted them to and I wouldn’t have all these pesky difficulties getting in the way, I realized that I had everything backwards. Challenges in my path didn’t mean I was doing something wrong–they just /were/–just part of life. But they were also giving me a chance to grow stronger and be a better person. The fact that I kept facing new challenges was, in part, because I’d successfully overcome the old challenges, and that meant I was doing something very right! When I was able to start giving up on the idea that my life should, would or even could be “perfect”, that was when I was able to free myself to make the most of all the opportunities for growth in my life, even the opportunities that I did not want.

    Thanks, Julie, for another great post!

    • julie on August 1, 2012 at 1:54 pm

      Thank you for reading, Laura! These are good self-reminders for me too. Have a great day, Julie

  678. Lawrence on August 1, 2012 at 6:43 pm

    I’m still working on acceptance…. I thought that by the time I got my Narcolepsy diagnosis that I would have accepted all the stuff going wrong with me, and move to working on doing something about it.

    But, I didn’t have the feeling of relief (almost joy) that I had when I failed my first sleep study. Perhaps because things didn’t end there….

    Not to mention the whole ordeal with having to require all my doctors to be comfortable with the diagnosis. And, then having to find a different doctor that would be comfortable with treating it.

    Wonder if I’ll ever be back to they way things were before….

    • julie on August 1, 2012 at 6:45 pm

      Thank you for your comment, Lawrence. I’m sorry to hear that the diagnosis process has been so challenging. Hang in there! Thank you for your continued support of my efforts. Cheers, Julie

  679. […] recently wrote about replacing negative self-talk with positive mantras. This article takes the idea a step […]

  680. Kathy on August 4, 2012 at 11:40 pm

    Hi Julie,
    Love reading your blogs, you are such an inspiration!

    • julie on August 9, 2012 at 5:45 pm

      Thank you, Kathy! I look forward to seeing you at the NN conference in October. Cheers, Julie

  681. Elizabeth on August 9, 2012 at 5:03 pm

    Julie, just started reading your blog and I’m so grateful for this and all the other wonderful people who are going through the same things I am!

    The other day I told someone I didn’t feel comfortable driving because I fall asleep at the wheel and then they laughed and said “Narcolepsy isn’t that bad.” For some reason that made me cry, which before when I hadn’t been diagnosed people often joked I had Narcolepsy and I would laugh right along with them. Now that I know it’s something I can’t help, it felt like they were laughing at my health and ultimately making me feel lesser-than. But, your 6th point has been one I’ve come to love; knowing I’m not alone even if no one close to me or my family understands, is very encouraging.

    Hopefully years from now I can look back and see everything being diagnosed with Narcolepsy has helped me with; finding myself, finding out I have a passion for learning and listening, and realizing it’s okay to tell people I don’t like to drive without feeling incompetent. So thank you:)

    • julie on August 9, 2012 at 5:42 pm

      Hi Elizabeth,
      I understand completely. Communicating with friends and family about narcolepsy can be challenging. I recommend reading: “The Pause and Nod,” “The F word” and “I’m a person with Narcolepsy and I’m Proud” found here: https://julieflygare.com/start/. Download and share my narcolepsy quick fact sheet with others. You are not alone. You’re overcoming adversity and I’m cheering for you! Thank you for following my blog.
      Sending wakefulness and smiles from DC,
      Julie (aka the REM Runner)

  682. Laura on August 24, 2012 at 7:57 pm

    You know, since the advent of narcolepsy in my life, I’ve noticed the word “lie” comes up a lot more often in my my written communication (e-mails with family and friends who aren’t nearby, mostly) than before. And, like you, not in the fibbing sense. And it’s made me wonder a lot if I’ve been using the various forms correctly. Since the correspondence has been mostly informal e-mail, I hadn’t bothered to research it yet. But, now I know! Thanks, Julie!

    I own the book “501 Verbs in Portuguese, Fully Conjugated” (and the Spanish counterpart) and I often wish for a similar book in English. I mean, most of the verb forms I know. But sometimes I’d really like some clarity on, for instance, the correct past participle for “dream.”

    • julie on August 24, 2012 at 8:04 pm

      Thank you, Laura. I’m glad you feel my pain on the lying front. Clearly, I dream a lot in my memoir too, so I better look into the correct past participle! 😉

  683. Gail Pean on August 25, 2012 at 6:47 pm

    Thank you Julie and Pam for the interesting interview. I look forward to reading both books soon.

    • julie on September 20, 2012 at 3:30 pm

      Thank you Gail. You’ll love the book – it’s amazing! 🙂

  684. unell hobbs on August 26, 2012 at 2:15 am

    I was a little worried. Glad you are just working hard 🙂

    • julie on September 20, 2012 at 3:29 pm

      Thanks, Unell! Yes, just hard at work. Hope you’re doing well! Big smiles, Julie

  685. REMRunner in the News on August 30, 2012 at 3:24 am

    […] Where I StandDangerous LaughterWhy Not […]

  686. Makky's Mom on September 4, 2012 at 2:26 am

    Julie, thank you for sharing our story with your readers. You covered it beautifully and accurately. Thank you also for your kind words about Makenna being an inspiration – she’s an inspiration to us too. If there’s any child I know that can handle Narcolepsy and Cataplexy with grace and courage, it’s Makenna!

    • julie on September 5, 2012 at 6:41 pm

      Thank you so much for your kind comment! It’s an honor to share your daughter’s journey with my readers. Sending big smiles and many thanks from DC, Julie

  687. jenean on September 18, 2012 at 8:00 pm

    I love your blog! I have recently started a group on facebook so we can update our daily struggles and let everyone know they are not alone. We have such a hidden disability and face so many judgments. So many of us suffer depression and feel alone and the group has been really helpful for a lot of people! I think you would make a great addition to the group 😉

    • julie on September 18, 2012 at 8:21 pm

      Thank you, Jenean. I would be thrilled to join your Facebook group. Thanks for thinking of me and reaching out. Cheers, Julie

  688. Lee Grant on September 19, 2012 at 6:46 pm

    Thank you, Julie, for your inspiring presence and leadership in raising awareness for narcolepsy and cataplexy! It was a pleasure to share the CVC Weekend Wellness Retreat experience with you (and your birthday as well!) and Trinity and I look forward to seeing you again soon.

    Cheers,

    Lee

    PS: Your website and blog are amazing! 🙂

    • julie on October 9, 2012 at 3:58 am

      Thank you, Lee, for your kind comment! I’m so glad you like my website and narcolepsy blog! I miss you and Trinity so much already. Big smiles from DC, Julie

  689. Alex Withrow on September 20, 2012 at 2:27 pm

    I love this. Great message here. Keep fighting, keep going.

    I’m so proud of you, on a multitude of levels.

    • julie on September 20, 2012 at 3:28 pm

      Thank you, Alex! Big smiles from DC, J Fly

  690. Debbie on September 20, 2012 at 4:46 pm

    Very inspirational! Keep going! 🙂 Have a great day!

    • julie on September 21, 2012 at 9:13 am

      Thank you, Debbie! Have a great day too!

  691. Gail on September 20, 2012 at 4:52 pm

    So happy you are in the silver lining! Enjoy the view from up there.

    • julie on September 21, 2012 at 9:13 am

      Thank you, my dear friend Gail!

  692. Michelle hemingway on September 20, 2012 at 10:15 pm

    SUCH a great message! Thank you for sharing so unselfishly!! So proud of you!! Love you, Julie!

    Keep Going!❤

    • julie on September 21, 2012 at 9:14 am

      Michelle, your comment means so much to me. Thank you so much for your kind words. Big hugs and smiles, Julie

  693. rebecca on September 21, 2012 at 1:13 pm

    …and you were perfect all along. you shimmer in your writing and give all
    of us reason to keep going and hoping.

    • julie on October 1, 2012 at 1:37 pm

      Thank you so much, Rebecca! That means the world to me. Big smiles, Julie

  694. Lawrence on September 22, 2012 at 9:58 pm

    You’re my inspiration….

    Wonder where I’ll be in 5 years? It’ll be just over 3 months when I show up at the conference….

    • julie on October 1, 2012 at 1:39 pm

      Thank you so much, Lawrence. You’re a strong insightful person and I feel lucky to call you a friend. See you at the Narcolepsy Network conference!

  695. elizabeth on September 25, 2012 at 4:31 pm

    A perfect description. Thank you.

    • julie on September 25, 2012 at 5:13 pm

      Thank you so much, Elizabeth.

  696. Stephanie on September 25, 2012 at 5:10 pm

    Beautifully written.
    Thank you for writing it.

    • julie on September 25, 2012 at 5:13 pm

      Thank you, Stephanie. Your support means so much to me.

  697. Dawn on September 25, 2012 at 6:51 pm

    Very nicely written! “I was a great sleeper, it was my special talent” My ability to sleep through virtually anything has been called my talent to.

    If you could cure your narcolepsy would you? I have come to the conclusion that I wouldn’t because I wouldn’t want to give up my dreams.

    • julie on September 25, 2012 at 6:55 pm

      Thank you so much, Dawn!

      That’s a great question. At this point, I certainly feel that this experience happened for a reason and cherish the lessons I’ve learned from narcolepsy, but if a “cure” comes around, I will be interested in learning more about it. 🙂

  698. Marion Roache on September 25, 2012 at 6:53 pm

    That is the best discription of narcolepsy that I have ever seen. Beautifully worded and described to a tee. Well done you!!

    • julie on September 25, 2012 at 6:57 pm

      Wow, that means so much to me, Marion! I’m so honored to share my experience to raise awareness. Thank you for your comment.

  699. Sasha on September 26, 2012 at 3:57 pm

    I just sent this post to my family because I’ve been trying to articulate what you wrote without success for so many years. Thank you!

    • julie on September 26, 2012 at 4:00 pm

      Thank you, Sasha! I’m so glad. Washington DC misses you (especially me)!

  700. CC on September 26, 2012 at 4:07 pm

    I am a 31 year old female I was diagnosed with Narcolepsy I am married to a wonderful man God blessed me with him. I was just what everbody thinks I want to have a baby but me and my husband are not sure because of my Narcolepsy. I am afraid my child might have Narcolepsy and I don’t want the baby to have Narcolepsy. I really want a baby one day. Please give some input what should we do

    • julie on September 27, 2012 at 2:34 pm

      Hello, Thank you so much for reaching out with this important question. I cannot give medical advice, I’m just another patient with narcolepsy, not a doctor. Generally, I’ve met many mothers who have narcolepsy. I would be happy to put you in contact with someone who have been through what you are considering! Thanks again, Julie

  701. Rebekah on September 26, 2012 at 5:04 pm

    I cried when I read this. It is a perfect description of what I go through daily. My relationship and my life is suffering because of this and don’t know what else to do. Thank you for writing this. Makes me feel like I’m not alone.

    • julie on September 26, 2012 at 5:11 pm

      Rebekah: thank you for your kind comment. It’s so good to know we are not alone in this journey. Sending big smiles and wakefulness your way, Julie

  702. Khati on September 26, 2012 at 5:23 pm

    I don’t think that anyone I know really understands what “being sleepy” means to people with narcolepsy. How could they? Thank you for writing this.

    • julie on September 26, 2012 at 5:34 pm

      Thanks for your comment, Khati! Cheers, Julie

  703. Gordon on September 27, 2012 at 10:59 am

    Great article Julie keep up the great work
    Goron Gow

    • julie on September 27, 2012 at 1:45 pm

      Thank you, Gordon. Cheers, Julie

  704. Chris Brown on September 27, 2012 at 2:59 pm

    Excellent piece Julie! I couldn’t think of a better way. of describing daily life with N!

    • julie on September 27, 2012 at 3:02 pm

      Hi Chris, I’m so glad you liked my essay. Thank you so much for your comment!

  705. […] that Using a Wakefulness Test to Detect Excessive Daytime Sleepiness in Drivers May be UnreliableSleep’s Choice: Living with Narcolepsy’s Excessive Daytime SleepinessSleep’s Choice: Living with Narcolepsy’s Excessive Daytime SleepinessIs […]

  706. Lelia on September 29, 2012 at 3:02 pm

    Julie –

    Wow 5 years?!?! That’s crazy!! When you’re tired it drags, when you sleep it speeds up but when it all comes down to it, time flies.

    You could also tell yourself:
    You will find a way to fight for yourself and become the voice for ALL Narcoleptics. You will be seen as a role model, an inspiration and give hope to many.

    I love your spirit!!

    Keep Going!!

    -Lelia

    • julie on October 1, 2012 at 1:43 pm

      Lelia, I never imagined that my journey would inpsire others. I feel so blessed for all the support and friendship I’ve received along the way from kind wonderful people like you. Thank you so so much. Big smiles, Julie

  707. Sarah on September 29, 2012 at 8:26 pm

    Absolutely nailed what i’ve been trying to describe for years.
    Love this, and love your writing.
    I linked this one to my blog because I love it a little too much!
    Thank you for posting/writing this!!
    Cheers!

    • julie on October 1, 2012 at 1:35 pm

      Sarah, I’m so pleased you like my essay. Thank you so much for linking from your blog. Big smiles and many thanks, Julie

  708. Gina Anderson on September 29, 2012 at 10:43 pm

    I loved your article. I was diagnosed with Narcolepsy with cataplexy when I was in my late 30’s. No one in my family has this sleep disease that we can find. I had various tests on my brain through several years; along with sleep studies before it was said that mine was caused possibly by a severe blow to the head that I received in a car accident.

    I was so impressed with this child. I can only imagine how upsetting it is to a parent of someone so young. As she grows; her meds will be adjusted and she will learn her limitations. Seems she is learning them already. She really can lead a good, productive life. I pray she does.

    I think when I saw this article; I just wanted to share with her parents for them to watch her in the summer months to see if she experiences more symptoms. It has been true for me; however; I haven’t any medical facts to base that on. It may be something that they go years without realizing that the heat could be a problem.

    As you know, you just have to learn to deal with this. I try very hard to never feel sorry for myself and realize that God picked me for this for some reason; perhaps to be instrumental one day in a child’s life.

    • julie on October 1, 2012 at 1:33 pm

      Thank you, Gina, for your thoughtful response ot my blog post about brave Makenna.

  709. Helen on October 1, 2012 at 6:39 pm

    A wonderful description. I cannot fully understand what my 10yr old son goes through on a daily basis. This piece makes me feel so proud of him. thank you.

    • julie on October 1, 2012 at 6:48 pm

      Thank you so much, Helen. I’m so sorry to hear your young son has narcolepsy. I’m inspired by the strength of the children I’ve met with narcolepsy. All my very best to you and your family, Julie

  710. Melissa on October 1, 2012 at 10:44 pm

    Thank you for this apt description of my personal struggles. I can never thoroughly explain narcolepsy, but you’ve provided me the necessary words. Your writing is so positive and uplifting and has helped me feel connected to others with this diagnosis.

    • julie on October 1, 2012 at 11:13 pm

      Melissa, Thank you so much for your comment. I’m so honored my essay helps describe your experience with narcolepsy. Cheers, Julie

  711. Kali on October 2, 2012 at 3:07 am

    I totally relate to your subscription of college. I was a Division 1 rower (aka 445 wake up call) so I always blamed my exhaustion on that. My teammates even joked that I was “narcoleptic”. I was diagnosed 3 years later, 7 years after the start of my symptoms. I feel lucky though, my symptoms are “mild” compared to other people I’ve meet. However that fact sometimes leads me to try to be “stronger than sleep”, I’m working on it though:) thanks for sharing- it helps to feel like others have a similar story.

    • julie on October 2, 2012 at 3:26 am

      Hi Kali, I’m so glad you can relate to my essay. Division I rowing is SO intense, I can’t imagine having undiagnosed narcolepsy in that scenario. I imagine you are a very strong person who has overcome a lot of adversity. What an inspiration. Thanks for sharing. Big smiles, Julie

  712. Gina Lynn on October 3, 2012 at 1:10 am

    As a recently diagnosed narcoleptic and former “I’m tired because I do too much” person; I’ve been researching the disorder inside, outside & upside down. I must thank you for this glimpse into your struggle. Your explanation of the wave of exhaustion that eventually overwhelms absolutely mirrors my experience. I often tell my husband, “I’m so tired I could throw-up.” Knowing that others truly understand and are out here sharing makes coping a little easier. Thank you so very much.

    • julie on October 3, 2012 at 1:20 am

      Hi Gina, Thank you so much for your kind comment. I’m sorry to hear you’ve recently been diagnosed with narcolepsy, but you are certainly not alone. Finding a sense of community in our struggles helps make it do-able. Sending wakefulness and smiles your way, Julie

  713. jen on October 5, 2012 at 5:14 pm

    Julie, your blog is a wonderful resource! I discovered it today and have cried my way through a good portion of your posts.

    I was diagnosed with narcolepsy with cataplexy about a week ago. I have just started medication and am struggling to come to terms with it all. I am 41, a mother of 3 and believe I’ve been coping with this illness for more than 20 years (though I think my case is relatively mild compared with other stories I’ve read). For most of that time, I was treated with antidepressants because all the doctors I visited could only equate the symptom of “being tired all the time” with depression. I am fortunate to have finally been referred to a sleep specialist, who diagnosed me following an overnight and MSLT sleep study.

    I was wondering if Jenean would be willing to share her Facebook group info. I would love to connect with others who share the same struggles, especially as a newly-diagnosed PWN!

    • julie on October 5, 2012 at 5:22 pm

      Hi Jen,

      Thank you so much for your kind comment. I’m so sorry to hear that you’ve recently been diagnosed with narcolepsy. It’s a lot to adjust to, especially as a mom of 3 who has lived with undiagnosed narcolepsy for so long. I truly cannot imagine, but I am certain you are a strong person who has overcome a lot of adversity to get to this point.

      I have a feeling you will find strength and understanding in our PWN community. It’s not a cure, but it helps to know you are not alone. I’m so glad you’ve found my blog helpful as part of your journey! Please feel free to contact me if I can help point you towards additional resources.

      Sending smiles and wakefulness your way, Julie

  714. Larry on October 5, 2012 at 8:03 pm

    Thank you Julie. This is such a great article those of us who really wish to understand what a loved one with narcolepsy deals with day to day. For me it’s my 14 year old daughter.

    • julie on October 7, 2012 at 4:39 pm

      Hi Larry, Thank you so much for your kind comment. Your support of your daughter’s experience with narcolepsy is so invaluable. Big smiles to you both, Julie

  715. […] book […]

  716. Alex Withrow on October 10, 2012 at 3:37 pm

    Great write-up here. I like how you descried the vulnerability of the doctor vs. dinner statement. That seems very truthful to me, as an outsider.

    This was interesting to read for a number of reasons. As always, I appreciate the candor of your writing, but on a film level, I really appreciate how you point out the films faults (or, better worded, inaccuracies). I do want to see this flick, but I have a better understanding of what it’s all about after reading this.

    Well done, Fly!

    • julie on October 11, 2012 at 4:27 am

      Thank you for your comment, Alex! You are the guru of film reviews, so your kind words mean a lot to me. 🙂 Yours, Fly

  717. William Behun on October 10, 2012 at 7:08 pm

    I very rarely would go see a movie based on a write-up in a blog but you’ve really captured, I think, what is not just important but entertaining here. I am grateful that you brought this to my attention!

    • julie on October 11, 2012 at 4:28 am

      Hi William, Thank you for reading my post and commenting! I’m so thrilled you are interested in seeing this film. I don’t think you’ll be disappointed. Enjoy!

  718. William Behun on October 10, 2012 at 7:16 pm

    Like so many that have posted here, this description so closely matches my own experience it’s a bit spooky. When in graduate school, I would have three or more three hour seminars each week. I would find myself, at some point in each one, no matter how engaging the topic, fighting to keep my eyes open or focus on a text. I worried that my professors would notice, that they would think I was lazy, inconsiderate, or uninterested. (for the record, I might be lazy, but that’s neither here nor there) It wasn’t until many years later that I got a diagnosis, and I’ve found that a few basic behavioural changes allow me to manage narcolepsy with astounding success. I am very lucky in this regard. But what could I have accomplished if I had known this earlier? How many wasted hours working on my dissertation could have been saved if I knew then what I know now?

    This is precisely why pieces like this, and blogs like this and others like http://queenofsleep.wordpress.com/ are so important. Thank you.

    • julie on October 11, 2012 at 4:33 am

      Hi William!

      Thank you for reading my essay. I’m so sorry to hear that you too have experienced what I described here. It’s incredible what you accomplished given your circumstances and undiagnosed condition in graduate school. I’m so glad to here you are managing successfully now!

      Thanks again for reading my blog.
      Cheers, Julie

  719. Lawrence on October 11, 2012 at 2:16 pm

    Time to make room in my Netflix queue of movies I want to watch, but never seem to have the time to…. zzz I didn’t know there was a 500 disc limit in the queue….though at my current rate of consumption, it’ll take 50 years to watch it. So, there’s probably a lot of stuff that’s been spoiled….

    Though I need to buy a new DVD player, maybe it’ll come out for streaming….though I hardly use that, been thinking of dropping it…though the new TV I bought a couple weeks ago to replace the one that died has it built in.

    I’ve been failing at adapting a new sleep routine now that its harder to sacrifice some sleep to fit schedules. It might get bad enough to where I’ll have to sacrifice half my sleep…which I’m sure to do at the conference, where I’ll be a first timer as a PWN.

    • julie on October 12, 2012 at 1:40 pm

      Hi Lawrence, I understand – time management can be challenging with narcolepsy. Hang in there. Looking forward to the Narcolepsy Network conference too! -Julie

  720. Mia Large on October 12, 2012 at 10:29 pm

    Beautifull!! Very eye opening description, what got me was when you used the term ‘lurking BEHIND you’. That hit a spot for me, only because it suggests in a reality I beleive, that Narcolepsy may be seperate from me/us like a seperate ( for me) Demon lurking around waiting for my signs of weakness, so it can jump on and into me and drag me down to the ground!!! The reason I beleive it targets me is because of the God given strngth i have shown to live my life through honesty, and growth through amazing struggles….FAITH! In peoples hearts, life, love myself…truth.. God! thanks for showing me its the same Demon you fight, I fight it like its a weak person, powerless against truth. The truth is it hdas no Authority to control me so with God I wont let it!!! I went the fight route but with out being able to TRUST in my protection Im too weak, drugs, healthy. He can kill the body but not the spirit!!!

    • julie on October 12, 2012 at 10:57 pm

      Hi Mia, Thank you so much for your kind and thoughtful comment. I’ve met so many inspiring people with narcolepsy overcoming incredible adversity. Your positive spirit will help guide you through narcolepsy, and life! Thank you for sharing and inspiring me! Big smiles from Washington DC, Julie

  721. Juliette on October 14, 2012 at 4:47 am

    Julie,
    As a mother of a child who stuggles daily trying to dodge the overhanging shadow of sleep, i was overwhelmed by your descript.
    I try to imagine by Master 7’s description and recall, but langauge skills inhibit my full ability to comprehend the extent.
    Reading your words have cleared the fog from my eyes as to what Master 7 feels and suffers, for this i am and will be eternally grateful.
    I can now place his feelings and validate his experiences daily.
    Being relatively new to the whole Narcolepsy world, a mere 18mths since diagnosis, and now battling anger, frustration, hallucinations, paralisis, night terrors, day dreaming on top of the ever returning sleepiness and the sudden cataplexy that seems to knock the life out of my sweet poor boy.
    Feeling helpless but now armed with your words i have understanding
    Again thank you .

    xoxoxo
    Juliette Lyddieth, Sydney Australia

    • julie on October 14, 2012 at 3:11 pm

      Hi Juliette,
      Thank you so much for reading and commenting on my blog. I’m so sorry to hear that your child was recently diagnosed with narcolepsy 18 months ago. Narcolepsy isn’t easy to adjust to, but we are a supportive community. Although narcolepsy doesn’t go away, each day gets a little easier and more manageable to me. I continue to learn coping strategies to live well and happily.
      Hang in there. Your support of your child’s experience is a wonderful thing that will help so much.
      Cheers, Julie

  722. Zoe on October 14, 2012 at 8:35 am

    Julie… I just wanted to say thank you for your blog. I stumbled across it today, on a day when I really needed something like this… and I found your page.

    It’s hard to explain to others the personal war that we fight with ourselves every day. Each morning, waking up to battle and arming ourselves with medication, coffee, energy drinks – the works.

    Personally, like you I just ignored my N. Successfully I might add, for 14 years. Then, recently, right as all of my hard work in life started to pay off for my career – I started losing the daily battle.

    It’s inspiring and comforting to see someone like myself reach acceptance of their N, because fighting it (in fact, myself) every day is exhausting.

    I hope I too can find peace with it. Thank you for sharing Julie.

    • julie on October 14, 2012 at 3:08 pm

      Hi Zoe, Thank you so much for your comment. I’m so sorry to hear that you’ve battled so long with N. We do our best each day and you should be proud. Our struggle is invisible, but still very real. Hang in there! Sending wakefulness and smiles your way, Julie

  723. Mitch Mitchell on October 15, 2012 at 4:12 am

    How wild. I used to work with someone who had narcolepsy. She seemed like she barely kept her eyes open, but she was on some kind of medication that allowed her to stay awake. She was also kind of a miserable sort, I hate to say, and I often wondered if it was related to that.

    Luckily I don’t have that. I do have sleep apnea, and even with the CPAP I’m tired all the time, but I do sleep a little better. I’m sure it’s a combination of other factors as well, but I get those overwhelming urges to sleep, but none of the associated pain. Good thing I work from home so I can sleep, but it never happens in the evenings. I guess I need more research.

    Thanks for sharing this; great perspective on it.

    • julie on October 16, 2012 at 7:08 pm

      Hi Mitch, Thank you for checking out my blog and leaving a great comment! I’m so sorry to hear you have sleep apnea. This is a difficult disorder as well. Hang in there! Sending wakefulness your way, Julie

  724. […] Check out last year’s pumpkin patch here. […]

  725. Jasmine on October 17, 2012 at 2:18 pm

    I am 23 and I was diagnosed with narcolepsy when I was 16 years old when I started sleeping through most of my high school classes. I went to a sleep center and they did a sleep study on me and they discovered I had it. I’ve had some rough patches with this disorder at times it’s rough they started me on Provigil because I wanted something less addicting. It has worked good I started with 1/2 tablet a day then increased to 1 tablet a day and now I am currently at 2 tablet a day. I am hoping I won’t need anything stronger. It takes a lot to deal with this disorder but with a good support system I have been ok I have a boyfriend and family that are very supportive and I consider myself blessed that my narcolepsy doesn’t affect me driving and living my life like I want to.

    • julie on October 17, 2012 at 3:06 pm

      Hi Jasmine,

      Thank you for your great comment. I’m so sorry to hear that you were diagnosed with narcolepsy at the young age of 16, but it’s inspiring to hear that you are coping well with a good support system!

      It’s good to be cautious with medications, for sure. I’m so glad to hear that you’ve worked with your doctor to find a dosage that works well for you.

      Sending smiles and wakefulness your way,
      Julie

  726. […] Contact Me […]

  727. Alex Withrow on October 17, 2012 at 6:39 pm

    Looks great! Can’t wait to do more of these with you!

    • julie on October 17, 2012 at 6:58 pm

      Thank you, Alex! I’m forever grateful for your help.

  728. Stephanie Suttle on October 18, 2012 at 12:25 am

    Really well done! I can’t wait to see more. Thanks for doing all you do to raise N awareness.

    • julie on October 18, 2012 at 3:09 am

      Thank you so much, Stephanie! Your support means so much to me. Big smiles, Julie

  729. Lilia Slavova on October 18, 2012 at 3:23 am

    Dear Julie,
    Bravo for the website and good luck!
    Stay strong!
    Lilia

    • julie on October 18, 2012 at 3:25 am

      Hi Lilia,
      Thank you for checking out my website!
      Big smiles,
      Julie 🙂

  730. Carol Mahlstedt on October 24, 2012 at 2:00 pm

    I STRONGLY urge the FDA to select Narcoplepsy for new “patient-focused” drug development initiatives. This disorder has a devastating impact on the academic, professional and relational lives of patients and their families. In otherwise healthy individuals, this disorder can completely destroy patients’ careers, relationships and their ability to function adaptively day-to-day.

    • julie on October 24, 2012 at 2:04 pm

      Thank you, Carol, for supporting my efforts! This is a well-written statement. Let me know if you have any questions about the public comment submission process on regulations.gov website!

      Sending wakefulness and many thanks your way, Julie

  731. Brianna on October 24, 2012 at 2:59 pm

    Please support this cause, for every child who is left with only one parent most of their life because the other parent is asleep or unable to get out of bed due to Narcolepsy. Also, for every child inflicted with Narcolepsy who can’t go out and play with their friends because they are too tired to go outside. People with Narcolepsy are having to sleep their lives away. Please help to give them their lives back.

    • julie on October 24, 2012 at 3:02 pm

      Thank you, Brianna! We will fight hard for a brighter future. Cheers, Julie

  732. […] with public policy experts, I’ve created this Submission Guide and Example Letter for the narcolepsy community. The more comments, the greater our chances. Please take two minutes […]

  733. Julie on October 24, 2012 at 3:04 pm

    Julie,

    The download submission guides and letter link is not working. Would like to forward you letter to all friends and family.

    Thanks,
    Lynne

    • julie on October 24, 2012 at 3:09 pm

      Lynne, Thank you for this feedback. I *think* I’ve resolved the issue.

      Please try: https://julieflygare.com/fda-letter/

      Let me know if you continue to have issues with this!

  734. flora arcuri on October 25, 2012 at 1:24 am

    My poor grandson Andrew is only 10. He has had narcolepsy for over a year. We have watched this beautiful, smart athletic child struggle with the side effects of the drugs that are keeping him awake so he can go to school. No more sports, although he was a fantastic pitcher. No more kisses and hugs because he is angry and grouchy with the meds, He has controlled his cataplexy where he falls to the ground like a wet noodle, but is now having night terrors and scratching himself to death. He is isolated in his room where he feels safe and forgot how to socialize. I want my grandson back, but unless the FDA can get the drug companies to create what is missing in his brain, we can’t know the future of this poor child.

    • julie on October 25, 2012 at 1:30 am

      Flora,

      Thank you for your comment. I’m so sorry to hear that your grandson has been battling narcolepsy this past year. It breaks my heart to hear how difficult this disorder is on your grandson. I know first-hand the challenges from battling the same symptoms, but I truly cannot imagine dealing with the challenges of narcolepsy at such a young age. It is children like your grandson who inspire me to continue fighting for narcolepsy. We will build a brighter future for narcolepsy together.

      With gratitude, Julie

  735. Jen on October 25, 2012 at 1:47 am

    I just read this and cried through the entire thing 🙁 I was diagnosed only a couple of months ago and I’m honestly not coping with it at all. I was less distraught BEFORE the diagnosis! I have such a fear for my future.

    • julie on October 25, 2012 at 2:07 am

      Jen,
      I’m so sorry to hear that you were recently diagnosed with narcolepsy. I am sorry to make you cry. Please trust that things will be okay. You’ve been through a lot of adversity and now you get to grow a greater support system and find strategies that work well for you with narcolepsy. I’ve been diagnosed over five years and although I’m not “better,” I have found better coping mechanisms, strength and friendship along the way. Hang in there!
      Sending wakefulness and smiles your way,
      Julie

  736. Denise Krivitsky on October 25, 2012 at 8:15 am

    Wow!!! I just found you through some research on the computer. As I read the above, I had tears running down my face. You put it into just the right words. I am always left feeling frustrated when trying to describe narcolepsy to others. They just don’t understand. I have had narcolepsy for about 5 years along with sleep apnea. It seems to have gotten worse lately, and I have taken 2 serious falls in the last 3 months. I know it’s because I have ignored the “heavy cloud” feeling I get and I try to push on. I was actually standing in front of the microwave, waiting for something, and fell straight back, my head hitting the kitchen floor quite hard. I thought I had cracked my head open. I didn’t, and I know I should of sought medical attention, but have no insurance.
    Thank you for your website, and I can’t wait for the book. I feel like I have found “family” now!!!

    • julie on October 29, 2012 at 12:22 am

      Denise,

      Thank you for your comment. I am so sorry to hear that you have had narcolepsy for about 5 years, along with sleep apnea. It sounds like your falls may be cataplexy attacks. Our narcolepsy “family” is a wonderful support system. My book will be out in December so please check back for details soon.

      Hang in there! With gratitude,
      Julie

  737. Jessica on October 25, 2012 at 10:52 am

    Julie-

    Thank you for the submission guide and letter! I just wrote mine and submitted it. I hope that many others will do the same! I read through the public comments that were posted and there were none out of the thirty! Have you posted this to the Narcolepsy Network message boards? Maybe more people will see it there? I saw it on the main page, but I know that when I go to NN that I generally skip to the message boards pretty fast!

    Thanks again!
    – Jessica

    • julie on October 25, 2012 at 12:44 pm

      Thank you so much, Jessica!! Please spread the word wherever you can. I’m sitting at FDA meeting waiting for it to start. I’ll report back afterwards. Cheers, Julie

  738. Alanna on October 25, 2012 at 12:59 pm

    Your descriptions are so poetic and evocative – they really convey how it feels. Congratulations! I have spent so much time searching for the words to explain it to people, and writing often – thanks for offering up such an honest and expressive account of what narcolepsy really feels like.

    • julie on October 26, 2012 at 6:15 pm

      Alanna, I’m so glad the essay speaks true to you! Many thanks, Julie

  739. Sandra Kelly on October 25, 2012 at 1:22 pm

    Loved your description of just pulling over when you are driving or finding a place to put your head down – a little nap –
    very accurate descriptions julie – you are not alone!

    • julie on October 26, 2012 at 6:14 pm

      Sandra, thank you for your kind comment. Safety in numbers! 🙂 cheers, Julie

  740. Jeanne Murray on October 25, 2012 at 8:29 pm

    I STRONGLY urge the FDA to select Narcolepsy for new “patient-focused” drug development initiatives. This disorder has a devastating impact on the academic, professional and relational lives of patients and their families. In otherwise healthy individuals, this disorder can completely destroy patients’ careers, relationships and their ability to function adaptively day-to-day.

    • julie on October 26, 2012 at 6:13 pm

      Jeanne: Thank you so much for your support of the FDA initiative for narcolepsy. With gratitude, Julie

  741. Representing People with Narcolepsy at the FDA on October 26, 2012 at 3:17 pm

    […] More about initiativeGuidelines and example letter  /* […]

  742. Representing People with Narcolepsy at the FDA on October 26, 2012 at 3:18 pm

    […] about initiativeGuidelines and example letter  […]

  743. Stephanie Suttle on October 26, 2012 at 4:38 pm

    Thank you for not only being our voice and advocate but also for being our biggest source of inspiration and support!

    • julie on October 26, 2012 at 6:11 pm

      Stephanie, your support means so much to me. Thank you from the bottom of my heart. 🙂 Julie

  744. Robin Feder on October 26, 2012 at 4:55 pm

    Proud to know that my comments and letter are among the 438 available to the FDA! Proud of you, Julie for being the voice for so many!

    • julie on October 26, 2012 at 6:10 pm

      Thank you so much for sending in your comment, Robin!! Big smiles, Julie

  745. Sarah on October 26, 2012 at 10:56 pm

    Awesome Job, definitely one of the braver Narcoleptics!!! 😉
    Sent in my letter, fingers crossed narcolepsy gets chosen!
    Cheers.

    • julie on October 29, 2012 at 12:16 am

      Sarah, Thank you so much for sending in your letter. I hope we get chosen too! Fingers crossed. Many thanks, Julie

  746. Kevin on October 27, 2012 at 3:27 pm

    Thank you for your dedication Julie. It was so refreshing to find your site recently, right in time to learn of the FDA initiative.
    I have to add, from someone who has almost no hope left of ever living anything close to a normal life with this disease – much less being undersood, the positivity you exude is a rare and welcome change that actually brings a smile to my face. Hope you know how much you are appreciated.

    • julie on October 27, 2012 at 3:57 pm

      Kevin, thank you so much for checking out my blog. I know narcolepsy can be so extremely tough but hang in there. Sending smiles and wakefulness your way, Julie

  747. […] my introductory awareness video. […]

  748. […] my second narcolepsy awareness video. […]

  749. Stephanie Suttle on October 27, 2012 at 9:00 pm

    Julie, another wonderful job!!! Thanks for your support and the wonderful work you do every day for us PWNs!!!

    • julie on October 29, 2012 at 12:14 am

      Thank you so much for checking out my narcolepsy video, Stephanie! Your support means so much to me. Big smiles, Julie

  750. Debra LaValley on October 28, 2012 at 12:28 am

    Great job, Julie! Have a great day!

    • julie on November 8, 2012 at 9:10 pm

      Thank you so much, Debbie!

  751. Makky's Mom on October 28, 2012 at 1:33 am

    Letting you know, Julie, that I submitted a letter as well. I also helped Makenna submit a letter too. I thought it would be meaningful and impressionable to hear it straight from a 7 yr old narcoleptic! Here’s what she (we) wrote:

    “I don’t know a lot about FDA but my mom tells me you might research new medicines for me. I have Narcolepsy with cataplexy. It is very bad. I feel yucky a lot. I miss a lot of school. Sometimes I can’t play with my friends because I’m too wobbly and I need to sleep. When my cataplexy is bad I fall down a lot. I sometimes fall down the stairs and get hurt.
    The doctor says I will have this all my life. I am only 7 years old so that’s a long time. I take medicine 2 times a day to feel more awake. It helps but I wish I didn’t have narcolepsy. I wish I felt better.
    If you can do something to help me, please do something to help me. Narcolepsy makes my mommy cry a lot. I know she worries about me. I don’t want my mom to worry so much because I love her. Please help me by finding new medicine for narcolepsy.”

    • julie on October 29, 2012 at 12:18 am

      Makenna and Mom – thank you so much for seding in letters to the FDA. Thank you for sharing Makenna’s letter here on my blog. It is a powerful testimonial. With gratitude, Julie

  752. Ashley on October 29, 2012 at 12:19 am

    Julie,
    Thanks for representing! I submitted my letter today. My mom, aunt, and boyfriend are also submitting 🙂

  753. Lexi Kellam on October 29, 2012 at 8:19 am

    Great piece of writing aside from the insightful description! As the mother of a Narcoleptic Cataplectic, I have learned the elements of these conditions from the sidelines….It’s difficult to be a loving spectator, too !

    • julie on October 30, 2012 at 1:03 am

      Thank you so much for your comment, Lexi. I imagine it’s very difficult from the point of view of a loving spectator. Thank you so much for supporting your child with narcolepsy and cataplexy. Your support is a gift to our whole community.

  754. Alex Withrow on October 29, 2012 at 2:49 pm

    You’re such a tireless advocate for this condition, it is so very inspiring. Really glad to hear the FDA actually listened. I think that is extremely important, and I’m glad you mentioned it specifically.

    Keep it up, Jules!

    • julie on October 29, 2012 at 10:51 pm

      Thank you so much, Alex! Your support means the world to me.

  755. Alex Withrow on October 29, 2012 at 2:50 pm

    I’m glad you’re liking how the videos are turning out. Production value isn’t the half of it though. It’s all about your dedication and effort! So glad we get to work on these vids together.

    • julie on October 29, 2012 at 10:53 pm

      Alex, your willingness to give your time and skills to create these narcolepsy awareness videos is such a huge gift to me and our community. I am forever thankful!!

  756. Garey Wheatley on October 29, 2012 at 7:20 pm

    I’m brand new here and I already learned something from your video. I do not get what I would consider a good nights sleep which confused me. I just naturally assumed that with my narcolepsy I should be sleeping excessively over night, which caused me to question the degree of my illness. You cleared that for me.
    Thank you,
    Garey Wheatley

    • julie on November 8, 2012 at 9:11 pm

      Hi Garey,
      I’m so thrilled you’ve found my website and that you found this video helpful! Hang in there and thanks for reading,
      Julie

  757. When Without Power, Create Art! on October 30, 2012 at 12:58 am

    […] Perhaps art journaling, making a vision board, setting your goals for the next three months, writing about your expereince with narcolepsy, or writing a screenplay. This is your golden candle-lit opportunity – embrace your inner Shakespeare! […]

  758. When Without Power, Create Art! on October 30, 2012 at 1:00 am

    […] – only THREE days left to send comments to the FDA, due Nov. 1st, 2012. Act today! /* Cancel […]

  759. Karen on October 30, 2012 at 3:49 am

    Julie you are a great roll model. My daughter, Heather is almost 12 and was diagnosed Aug. 2009 N w/C. She has had a rough first few years. I first saw the article of you in the CVC magazine. I’m glad I found this site. I feel helpless most of the time to her, but I keep looking for more info. Thanks for being our voice for Narcolepsy. I submitted my comment to the FDA!

    • julie on October 30, 2012 at 10:15 am

      Karen, thank you for your kind comment. I’m so sorry to hear your young daughter has narcolepsy with cataplexy. Your support of her experience is invaluable. I’m so glad you read my article in CVC’s Community Magazine and found my website too! Thanks for sending in your letter to the FDA. With gratitude, Julie

  760. “Kiss Me, I Have Narcolepsy!” on October 31, 2012 at 4:04 pm

    […] about SLEEP WALK 2011. […]

  761. Sleepy Pumpkin Patch 2012 on November 1, 2012 at 1:45 am

    […] Visit last year’s Virtual Pumpkin PatchMeet Mr. Punk-N-Snooze  /* […]

  762. Sleepy Pumpkin Patch 2012 on November 1, 2012 at 1:54 am

    […] last year’s Virtual Pumpkin PatchMeet Mr. Punk-N-Snooze  […]

  763. Kymm Stafford on November 1, 2012 at 3:59 pm

    A beautifully written article. Like so many said before, it describes how I feel everyday. I was diagnosed 15 years ago but 6 years ago the EDS symptoms increased and are more difficult to control. I’ve just recently started looking into Narcolepsy Networks and Blogs. In the past I felt that if I spent time reading about it I was just dwelling on the disease and I was trying the (don’t think about it and it will go away) plan. That didn’t work. Now I see how helpful blogs like yours can be. Thank you so much for your inspirational words.

    • julie on November 1, 2012 at 4:17 pm

      Hi Kymm,

      Thank you so much for your comment. I’m so sorry to hear that you’ve battled these symptoms for so long.

      I definitely relate to the “if I don’t think about it, it will go away” plan, especially since narcolepsy is somewhat “invisible” to others, we can try to trick ourselves into thinking it’s not there too. I’ve found that prioritizing my health sometimes does not mean that narcolepsy wins, but that I’m strategizing with narcolepsy towards living my best life possible.

      Of course, there is no one “right” way to handle narcolepsy, we are each on our own journeys! I’m so glad that you’ve found my blog helpful along the way.

      Sending wakefulness and smiles your way,
      Julie

  764. Ming on November 1, 2012 at 6:24 pm

    Thank you !

    Following up from my last year’s lack of a pumpkin in the Southern Mohave Desert https://julieflygare.com/welcome-to-the-worlds-sleepiest-pumpkin-patch/#comment-871 to this year’s growing a living pumpkin in my living pumpkin patch, Thank You for having this Sleepy Pumpkin Patch. Last year I only had a sharpie when I found a pumpkin and this year the sleepy pumpkin is still growing.

    Ming
    With Intention: a zine about a person with narcolepsy
    http://www.zinewiki.com/With_Intention:_a_zine_about_a_person_with_narcolepsy

    • julie on November 1, 2012 at 6:26 pm

      Thank you, Ming, for contributing two years in a row. A year can bring so much change. I love your still growing pumpkin! The photograph’s bright green tones and warm sunshine are so uplifting. 🙂

  765. Cindy on November 1, 2012 at 9:51 pm

    I submitted my letter! Just doing my part. Keep on keeping me informed. C

    • julie on November 1, 2012 at 10:16 pm

      Thank you so much, Cindy! Big smiles, Julie

  766. Keith Rubenstein on November 6, 2012 at 3:57 am

    Julie,

    Thank you once again! This was an excellent description of how I feel each day. Ill begin using the “100 x” more sleepy. I never say tired, fatigued etc. It is only sleepy as at any second we could fall right asleep.
    Keep up the great work.

    Keith

    • julie on November 6, 2012 at 4:02 am

      Thank you so much for watching my narcolepsy awareness video, Keith! So glad you like my tips on communicating about sleepiness of narcolepsy. Many thanks and big smiles, Julie

  767. CHRISTINA WEAVER on November 6, 2012 at 11:31 pm

    This succinct perspective is well written. Your view of Life, the equanimity with which you face your obstacles, astonishing. You’re less than half my age; I wish I had your courage- such resilience- in facing my own illness. Last week, I came across something your father wrote to me about you circa 1996. His pride in you fills my eyes with tears as I write now. Thank you for your inspiration.

    • julie on November 11, 2012 at 3:10 pm

      Hi Christina, Thank you so much for your kind comment. Cheers, Julie

  768. Narcolepsy Research Update 2012 on November 9, 2012 at 12:49 am

    […] dedication to narcolepsy research is inspiring. During our presentations together at Harvard Medical School, his eyes light up when he describes the advancements and challenges in unraveling the mysteries of […]

  769. guimauve on November 9, 2012 at 6:30 pm

    Wow, Julie! You explain it perfectly… Often I say ‘I don’t go to sleep, the sleep comes to me’ but that doesn’t really get across how painful (and yes, as you say, violent!) it is. I feel like someone sneaks up behind me and puts a hood over my head and I am going down no matter what.

    One thing that has helped me is to tell people that it’s like you’re absolutely BUSTING to pee and just as you have one hand on the bathroom door your boss stops you for a friendly chat… You feel like you have to be polite but in truth you can’t even hear what he’s saying (he sounds like the teacher from Snoopy!) because your brain is just screaming to get in there and peeeeee already!

    • julie on November 11, 2012 at 3:09 pm

      Hi Guimauve, Thank you for your comment. I like your analogies very much and may try them out too! Thanks again for reading my blog. With gratitude, Julie

  770. Alli on November 9, 2012 at 6:32 pm

    Hi, I loved this post. I am not diagnosed narcoleptic, but I exhibit 3 out of the 4 major symptoms, but I’m afraid to get the sleep study done because in my state it means losing my license and my current city doesn’t have a good public transportation system. I’m moving back to a big city in the spring hopefully, where I’ll finally bite the bullet, but I’m scared still. I know putting a name to it won’t necessarily change anything, but the ramifications of it worry me.

    My difference I guess is that I have had fatigue for my whole life, attributed it to depression and didn’t think about it. I also had a tendency to dream before I fell asleep, but didn’t think much of it until the frequency grew. A few years ago I started getting constant episodes of hypnogogic and hypnopompic hallucinations, and started falling asleep in public. This became especially embarrassing in bars where they take falling asleep as a sign of drunkenness, even if I’d barely taken a sip of my beer! I would be talking and start dreaming without realizing it until I snapped out of it and saw the looks on my friends’ and family’s faces.

    I had a few questions. Since narcoleptics experience little NREM type sleep, our nights are mostly REM type, do you experience intense and sometimes lucid dreams? Do you feel like you have nightmares more frequently than you should?

    I guess I’m looking for feedback or advice, or admittedly… Validation. My family thinks I’m a hypochondriac who just needs antidepressants and to get over it.

    • julie on November 11, 2012 at 3:08 pm

      Hi Alli,

      I’m so sorry to hear that you’ve been struggling with fatigue, sleepiness, and hypnagogic hallucinations. You are not alone.

      I understand your very real and valid concerns about possible ramifications of diagnosis. I also know that if you were diagnosed, there are some treatment options that could help improve quality of life. In addition, with so much misunderstanding of narcolepsy and sleep-related issues, there is validation in pinning down a diagnosis with a sleep doctor knowledgeable in narcolepsy/hypersomnia disorders.

      Yes, I experience hynpagogic hallucinations. Read more here: https://julieflygare.com/wide-awake-and-dreaming-3/

      Hang in there! Big smiles, Julie

  771. My Blogalicious Birthday: REM Runner turns 3! on November 10, 2012 at 3:10 pm

    […] I had no grand expectations when I started blogging. […]

  772. John Paul on November 10, 2012 at 3:42 pm

    Hi!

    I am one of your FB friends. Lots of work you do for us PWN!
    This FDA initiative, did anyone address the need for more serious consideration to allow PWN to obtain Disability or partial Disability from not being able to work or work full time capacity?
    Thank you!

    JP

    • julie on November 11, 2012 at 2:59 pm

      Hi John,
      The FDA initiative invited patients and loved ones to write in comments about their personal experiences/challenges with narcolepsy. I imagine a portion of these letters discussed work capacity and disability considerations. Definitely an important point to discuss! Thank you so much for checking out my blog!
      Cheers,
      Julie

  773. Gordon on November 11, 2012 at 5:59 pm

    Happy Birthday Julie great work I read all your Blogs and pass them on.
    Have a great 4th. year
    Poppa Gow

    • julie on November 11, 2012 at 10:11 pm

      Thanks so much, Gordon.

  774. Arnold on November 11, 2012 at 8:08 pm

    WOW. …..3 years young and forever moving ahead.
    Julie, Happy is your Blog Birthday for us all; a result of your hard work over a heart felt mission to “run” ahead, with courage, strength and the power of knowledge enabling you and other PWN runners to leap over and pass the competitive Narcolepsy hurdlers in the chase.
    Thank you for that.
    Arnold

    • julie on November 11, 2012 at 10:13 pm

      Thank you so much, Arnold. It’s a joy to raise awareness about narcolepsy. Cheers, Julie

  775. […] my First Narcolepsy Awareness VideoWatch my Second Narcolepsy Awareness Video […]

  776. […] my Introductory awareness video.Watch my Third narcolepsy awareness video.  […]

  777. Alex Withrow on November 13, 2012 at 3:05 pm

    “If you don’t like what someone else says, run. Don’t look back, don’t bother trying to change that one person’s opinion.”

    YES. This is an excellent life lesson right here – couldn’t agree more.

    Three years long, three years strong. I’m so proud of you.

    • julie on November 13, 2012 at 3:22 pm

      Thank you so much, Alex. I’m just a baby-blogger compared to your amazing five years in the blogosphere. Your support means the world to me.

  778. Alex Withrow on November 13, 2012 at 3:06 pm

    Great message here! I can’t wait to release more of these. You’re a rock star!

    • julie on November 13, 2012 at 3:20 pm

      Thank you for making these videos possible, Alex!

  779. Matt O'Neill on November 13, 2012 at 9:54 pm

    Sheila,

    There is a UK based charity that can help you http://www.narcolepsy.org.uk

    Narcolepsy UK are one of the largest Narcolepsy charities in Europe.

    Matt

    • julie on November 13, 2012 at 10:24 pm

      Thank you for checking out my blog and for your helpful comment, Matt! Cheers, Julie

  780. Macy Gray Raises Narcolepsy Awareness on November 13, 2012 at 11:46 pm

    […] release my narcolepsy memoir next month to open people’s eyes to our condition. Please view my awareness videos here.   /* Cancel […]

  781. Macy Gray Raises Narcolepsy Awareness on November 13, 2012 at 11:58 pm

    […] narcolepsy wizard, Dr. Emmanuel Mignot, is also interviewed in this segment, along with his adorable dog with […]

  782. Mark Patterson on November 17, 2012 at 12:52 am

    Yeah Julie, that is great. Can’t wait to see the final product. Would make a wonderful Christmas present!

    • julie on November 17, 2012 at 3:45 pm

      A great holiday present indeed! Thanks for your support, Mark.

  783. Heather on November 17, 2012 at 1:28 am

    Way to go, Julie! I’m can only imagine the range of emotions you’ve been feeling. Almost there, girl!

    • julie on November 17, 2012 at 3:44 pm

      Thanks so much, Heather!!

  784. Julie Marsland on November 17, 2012 at 2:49 pm

    Can’t wait to read it and I want to give copies to my friends. I congratulate you for your tanasity in getting this finished. I am so proud of you you.

    • julie on November 17, 2012 at 3:44 pm

      Thank you so much, Aunt Julie. Your belief in my writing helped give me the courage to take this on. Love, little Julie

  785. emilee on November 17, 2012 at 3:21 pm

    Congrats Julie!!!!! Can’t wait to get myself a copy.

    • julie on November 17, 2012 at 3:35 pm

      Thank you so much, Em!! You’ve been through it all with me. 🙂

  786. Cheryl on November 17, 2012 at 10:43 pm

    Any idea which 20 diseases the FDA chose?

    • julie on November 18, 2012 at 1:51 pm

      Hi Cheryl, there is no word from the FDA yet on the final disease areas chosen. I’ll be sure to send an update as soon as I hear. Thanks so much.

  787. Sarah Beaulieu on November 18, 2012 at 2:59 am

    Can’t wait to read it over the holidays!
    Congrats on such an accomplishment! =)

    • julie on November 18, 2012 at 3:37 am

      Thank you so much, Sarah!!

  788. Sara Kowalczyk on November 18, 2012 at 6:37 am

    This is an amazing accomplishment Julie! Not only have you raised narcolepsy awareness but you have entered the elite of young writers who have successfully published a memoir at such a young age…..truly extraordinary and I can’t wait to read it. Thank you for using your talents to make such a tremendous difference.

    • julie on November 18, 2012 at 1:47 pm

      Thank you so much Sara! My next memoir might be about overcoming the adversity of writing a memoir! Kidding, sort of. It’s been quite the journey and I hope my book contributes in some small way to a brighter future for narcolepsy.

  789. Tina Clawson on November 20, 2012 at 7:10 pm

    I too want to thank Julie, Katy, and Robbie for being willing to open up their lives and struggles with narcolepsy. My daughter who is 15 was having these episodes and everyone thought it was seizures. I knew it wasn’t because she is conscious the whole time. Laughter is also her trigger for cataplexy and sometimes when she is coming out of sleep. Her knees buckle and she falls. I have also seen her face and eye twitch. Because of your show I was able to explain to the neurologist what was going on with her. We are now awaiting a consult with a sleep medicine doctor.
    However, without the bravery of these two ladies, my daughter might have suffered silently for much longer.

  790. A Note of Thanks & FDA Update on November 22, 2012 at 11:24 pm

    […] Update:Last month, I launched the campaign for narcolepsy’s inclusion in the FDA Patient Focused Drug Development Initiative, but I […]

  791. My Blogalicious Birthday: REM Runner turns 3! on November 23, 2012 at 1:10 pm

    […] past year, you’ve helped me through the darkest days after my father’s passing, to later cheer me on running Mt Washington in his honor. You’ve encouraged me along the […]

  792. Alex Withrow on November 27, 2012 at 1:54 pm

    This one came out nice! And I agree, very important to openly discuss cataplexy and all that comes with it.

    Great job, Jules!

  793. julie on November 27, 2012 at 4:14 pm

    Thank you so much, Alex. Your patience and incredible kindness in working with me to make these videos is truly amazing. I’m so lucky!

  794. rebecca on November 27, 2012 at 7:36 pm

    hi julie!
    this is very helpful in making the experience of cataplexy understandable for those
    who don’t know what it feels like and it’s great to see on camera! 🙂

    • julie on November 27, 2012 at 9:41 pm

      Thank you so much, Rebecca! I love making these videos so I’m thrilled they are well received. Big smiles sent your way!

  795. Narcolepsy Awareness Video 4: What Is Cataplexy? on November 28, 2012 at 2:17 am

    […] Watch Video #3Watch Video #2Watch Video #1  /* […]

  796. Jessica on November 30, 2012 at 2:39 am

    Thanks for the update! I was trying to find information and am glad I found your update! And thank you informing us and making it so easy to leave comments! I am really hoping that Narcolepsy makes the list.

    Again, thank you for the information and opportunity to include the voices of people affected by Narcolepsy, I would have never found out about it otherwise! <3

  797. […] Have other creative ideas for raising awareness this season? Post a comment! For tips on communicating about narcolepsy during the Holidays, read: The Pause and Nod.  […]

  798. […] to film my hypnagogic hallucinations and sleep paralysis was especially funny – do you capture what’s happening in my brain or in reality? We […]

  799. Makky's Mom on December 4, 2012 at 6:59 pm

    I can’t seem to find it available on Discovery.ca here in Canada. Will it be available to download? I really want to see it!!!

    • julie on December 4, 2012 at 7:02 pm

      Hi Makky’s Mom! I’m so sorry you can’t find it on Canada’s Discovery Channel listings. The program should be online at some point. I will update my blog as soon as I know more. Thanks so much, Julie

  800. kelly on December 4, 2012 at 9:07 pm

    Sometime they get posted on youtube for thoses who miss it or unable to view it who live out of the US..Or in this case here

    • julie on December 4, 2012 at 9:14 pm

      Great info. I will share the video when available!

  801. kelly on December 4, 2012 at 9:08 pm

    so excited : )

    • julie on December 4, 2012 at 9:14 pm

      Thanks so much, Kelly!

  802. Melissa on December 5, 2012 at 8:09 am

    Hi Julie
    I can’t find the listing on Australian Discovery Channel either…hopefully they will play it here as well. If not I’ll keep an eye out online and on you tube so I can upload the link for our members too.
    Cheers
    Melissa

    • julie on December 5, 2012 at 1:14 pm

      Thank you so much, Melissa! I will certainly post the online video ASAP! Sending wakefulness and smiles from the other side of the globe, Julie 🙂

  803. peggy on December 5, 2012 at 12:47 pm

    I’m placing a link to this on my fb page in the hopes at least some from my extended family will watch. Then maybe they will change what they call me from loony to strange. 🙁

    • julie on December 5, 2012 at 1:12 pm

      Thanks, Peggy. I don’t believe anyone is “loony,” as there are very real causes of narcolepsy and other neurological “invisible” conditions. I hope my site and other forums can provide some solace, support and validation of your experience with narcolepsy because you deserve it! Big smiles, Julie

      • peggy on December 5, 2012 at 3:52 pm

        Thanks Julie. I must give kudos to my husband, grown children and grandchildren. Although they may not fully understand it they at least acknowledge it and are very considerate when dealing with it/me. Now brother, sisters, nieces, nephews, in-laws…. well that’s a different story. I’ve learned that I’d rather live with the distance this has created between us than to try to maintain a relationship with those who whisper behind my back. I have so much to be thankful for and really don’t care to sweat the small stuff. Can’t wait to see the documentary. Thank you for being a voice for so many.

        • julie on December 6, 2012 at 5:03 pm

          I understand, Peggy. We must do what we can to surround ourselves with positive energy and support. It’s my pleasure to be a voice for narcolepsy!

  804. Gail Pean on December 5, 2012 at 2:13 pm

    Congratulations Julie on sharing your personal journey with Narcolepsy to the world at large to educate everyone. I will set my alarm to wake up early and watch on Saturday morning.

    • julie on December 5, 2012 at 2:24 pm

      Thank you so much for your support, Gail! I can’t wait to watch the show too.

  805. Mark Patterson on December 6, 2012 at 2:57 am

    Hi,This is Deborah. Just wanted you to know we will be watching. So glad you are willing to share your “narcolepsy” life with others to help with awareness. It is appreciated!
    Deborah

    • julie on December 6, 2012 at 5:02 pm

      Thank you so much, Deborah! It’s truly an honor and joy to share and raise awareness. Your support means so much to me.

  806. Heather on December 6, 2012 at 4:04 pm

    What a great opportunity! I will be watching! Thanks for all you do, Julie.

    • julie on December 6, 2012 at 5:01 pm

      Thank you, Heather! Can’t wait. Big smiles, Julie

  807. Alex Withrow on December 6, 2012 at 4:25 pm

    Gah, I’m so excited to finally get to see this. I can’t wait for more people to be exposed to your inspiration!

    • julie on December 6, 2012 at 5:00 pm

      Thank you, Alex! Your videos are helping so much too. Thank you for your incredible support.

  808. […] AllWatch Video #4Watch Video #3Watch Video #2Watch Video #1  […]

  809. […] AllWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  810. Narcolepsy Awareness Video 4: What Is Cataplexy? on December 7, 2012 at 2:25 pm

    […] AllWatch Video #5: Communicating about CataplexyWatch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  811. Alex Withrow on December 7, 2012 at 2:27 pm

    I love how these are turning out! Great message here, Jules, can’t wait for the next video!

    • julie on December 7, 2012 at 2:31 pm

      Thank you so much, Alex. It’s all thanks to you – so generously giving your time and pro skills to help raise narcolepsy awareness.

  812. […] AllWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #2: Excessive Daytime SleepinessWatch Video #1: […]

  813. […] AllWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #1: Introduction to Narcolepsy  […]

  814. […] AllWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: […]

  815. […] AllWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #1: […]

  816. Jane on December 7, 2012 at 2:40 pm

    I’ve already send the info on the Discovery channel show to my brother and his wife who totally support me! Its tough to explain to others that you are exhausted but look normal. I also have Cataplexy. Still, with proper combination of meds – I take Xyrem at night and Effexor in the day….I can function….in between naps! Thanks for making this program!

    • julie on December 7, 2012 at 2:54 pm

      Hi Jane. Thanks for spreading the word! I’m so glad to hear you’ve found a good treatment regime including medication and naps. My treatment regime is similar. Sending wakefulness and smiles your way, Julie

  817. Garey Wheatley on December 7, 2012 at 9:42 pm

    Is there going to be an audiobook? My particular activator of narcolepsy/cataplexy is reading. I can not get a half page read before I am unconcious. Not the normal sleep, but the sudden sleep and waking as much as half and hour later thinking I am still reading, but lost.

    • julie on December 7, 2012 at 10:13 pm

      Hi Garey, Thank you for your interest in my book. I hope to release an audiobook soon! I understand completely, reading can be difficult with narcolepsy. Many thanks, Julie

  818. Vicki Tavana on December 8, 2012 at 12:50 am

    I think it’s great they are going to show this, want to see it but don’t have cable; will watch as soon as I can get it online.
    I’m in the process of trying to get on disability, SS says even though I can’t be a nurse anymore, I can still do “substantial” work, lol! Can’t think, organize my life and always late! How many employers are gonna keep someone with those symptoms?? IF they’ll even hire me to start with!

    • julie on December 9, 2012 at 3:50 pm

      Hi Vicki, Yes, raising awareness is very important. Hang in there! Thanks for reading my blog, Julie

  819. Lawrence on December 8, 2012 at 3:05 pm

    Strange…the print version is available for pre-order on Amazon.com, but not the Kindle version.

    • julie on December 9, 2012 at 3:43 pm

      Hi Lawrence. Thanks so much for your interest. I’m not sure how all the Amazon stuff works, but everything will definitely be on sale on Dec. 15.

  820. kelly on December 8, 2012 at 11:36 pm

    Is there anyway to get a copys DVDs and pass it out to the Drs, Family and Friends. This would make great x mass presents..

  821. kelly on December 8, 2012 at 11:50 pm

    at the end of the program they said something about dvds ..waiting to review the recording again.

  822. Kat on December 10, 2012 at 5:56 am

    Excellent presentation on Narcolepsy. Reassured me that my specialist and I are on the right treatment path.

    • julie on December 10, 2012 at 3:52 pm

      Hi Kat, I’m so glad you found the program enjoyable and reassuring. Thanks so much for commenting here! -Julie

  823. kelly on December 10, 2012 at 7:30 am

    its not showing the video here

  824. kelly on December 10, 2012 at 8:13 am

    cut and paste to my fb working

  825. Pam Harris on December 10, 2012 at 3:49 pm

    Julie,

    I really enjoyed seeing your story on the Discovery channel this past weekend. You are an exceptional advocate for the narcolepsy community. Keep up the great work!

    • julie on December 10, 2012 at 3:51 pm

      Hi Pam, Thank you so much for watching! It’s an honor and joy to advocate for others. Big smiles and happy holidays to you and your family, Julie

  826. hazel on December 10, 2012 at 7:56 pm

    Thanks from Canada. Great project Julie and Narcolepsy Network.
    Narcolepsy is not rare just rarely diagnosed. Effects on quality of life are vastly under estimated. I challenge each viewer to share this with a teacher, a friend and a medical professional.

    • julie on December 10, 2012 at 8:36 pm

      Thank you, Hazel! I’m so glad you enjoyed the program. Great idea to ask people to share with others. With gratitude, Julie

  827. Mark Patterson on December 11, 2012 at 3:28 am

    That’s a great cover and background story, Julie. Can’t wait to see it in person. Only 5 more days!!

    • julie on December 11, 2012 at 12:16 pm

      Thank you so much, Mark! I can’t wait too. 🙂

  828. Alex Withrow on December 11, 2012 at 2:42 pm

    It’s almost heeeere 🙂

    So exciting, congrats Fly!

    • julie on December 11, 2012 at 2:45 pm

      Thank you, Alex! You helped me through the process. Can’t wait!

  829. Phoebe on December 11, 2012 at 2:49 pm

    That is such a nice story Julie! It is a beautiful cover.

    • julie on December 11, 2012 at 2:58 pm

      Thank you, Phoebe! You are one of my balloons (and best freinds ever). 🙂

  830. Kathy Hirt on December 11, 2012 at 3:08 pm

    I love the cover! My son has narcolepsy. I know what a struggle it is for all of you with this illness. My wish is for your book to be a great success so others will know.

    • julie on December 11, 2012 at 3:15 pm

      Thank you so much, Kathy! I’m so sorry to hear your son has narcolepsy, but thank you for supporting his experience. I hope the book opens people’s hearts up to narcolepsy too. With gratitude, Julie

  831. Amelia on December 11, 2012 at 4:10 pm

    I came over here because I saw the facebook post today, and I’m so glad I did. What a beautiful story, it makes the image even more amazing.

    • julie on December 11, 2012 at 4:13 pm

      Thank you so much for your comment, Amelia! I’m so glad you like my cover and the story behind it. With gratitude, Julie

  832. Debbie on December 11, 2012 at 4:25 pm

    Fabulous cover and what a wonderful story behind the cover. I look forward to reading your book. I will be getting the Kindle version since I trip over all the books in my house 🙂 Happy Holidays!

    • julie on December 11, 2012 at 4:28 pm

      Thank you so much, Debbie! Look for the Kindle version on sale this Saturday, Dec. 15, 2012.

  833. Peter Mansbach on December 11, 2012 at 5:34 pm

    It looks like there are now SIX balloons (though perhaps still only five strings). Is there more to the story here?

    • julie on December 11, 2012 at 5:42 pm

      Great observation, Peter. No more to the story here – just an addition by the artist. Thanks for reading and commenting! -Julie

  834. Lindsay on December 12, 2012 at 3:01 am

    I just ordered my copy – can’t wait!

    • julie on December 12, 2012 at 3:57 am

      Thank you so much for ordering my book, Lindsay!

  835. Nicole on December 16, 2012 at 12:38 am

    Thank you so much for posting this Julie! The program will not be aired here in Australia so it is great to be able to watch it online. I wish I could make all the Dr’s have have been to over the years sit down and watch this!

    • julie on December 16, 2012 at 7:45 pm

      Hi Nicole, Thank you so much for your comment from Australia! I agree, I wish all the doctors who missed our cases would watch this. Lol! I see every conversation I have about narcolepsy as an awareness opportunity. You never know when you might be changing someone’s life. 😉

  836. Marguerite Utley on December 16, 2012 at 7:41 pm

    Julie: Congratulations on your book on narcolepsy! I just learned about it yesterday from your email and just finished watching the Discovery Channel segment. I am going to order a copy from Amazon today and look forward to reading your story. I can hardly believe that it has been 17 1/2 years since I wrote, “Narcolepsy: A Funny Disorder That’s No Laughing Matter.” A lot of progress has been made in research and treatment since then. Hope to meet you some day–maybe at NN conference. Thanks for your advocacy on behalf of all of us with narcolepsy.

    • julie on December 16, 2012 at 7:46 pm

      Hi Marguerite, Thank you so much for your comment. I’m so incredibly honored that you will check out my book. Your book provided such solace and great information for me when I was recently diagnosed, so I cannot thank you enough. With gratitude and smiles, Julie

  837. Nicole on December 17, 2012 at 9:06 am

    So very excited for you! What a fantastic feeling it must be to have your book published! I am just deciding if I will buy it on kindle to get it immediately (if I can sneak the kindle from the boyfriend!) or wait for paperback to arrive in the mail so I have it in the nice real hard copy format I love so much! Either way I am very excited to receive it and cannot wait to read it 🙂

    • julie on December 17, 2012 at 3:33 pm

      Thank you so much, Nicole!! Personally, I love the cover design so I like having the paperback version, but I understand wanting to read it sooner rather than later! 🙂 It is a fantastic feeling to be done and sharing it with the world. I can’t wait to hear what you think! Cheers, Julie

  838. […] Watch AllWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  839. […] AllWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  840. […] AllWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  841. […] about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  842. Jill on December 20, 2012 at 6:07 pm

    I can’t stay awake in a car. But can’t seem to sleep on a plane. Weird.
    Thanks for the tips on how to talk about narcolepsy. I am always at a loss!
    Merry Christmas!

    • julie on December 20, 2012 at 6:09 pm

      Thanks for your comment, Jill! Merry Christmas to you too!

  843. […] Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  844. […] AllWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: […]

  845. […] Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  846. 2012: Year in Review on December 27, 2012 at 4:49 am

    […] Giving 12 narcolepsy presentations across the country – from California to Cleveland; from Florida to Boston.3. Launching my video series.4. Running Mt Washington Road Race in honor of my father […]

  847. 2012: Year in Review on December 27, 2012 at 4:49 am

    […] my memoir!2. Giving 12 narcolepsy presentations across the country – from California to Cleveland; from Florida to Boston.3. Launching my video series.4. Running Mt Washington Road Race in honor […]

  848. 2012: Year in Review on December 27, 2012 at 4:49 am

    […] narcolepsy research.5.  Organizing the FDA initiative for narcolepsy.6. Sharing my story with Discovery Channel.7. Publishing popular Sleep’s Choice […]

  849. 2012: Year in Review on December 27, 2012 at 4:50 am

    […] presentations across the country – from California to Cleveland; from Florida to Boston.3. Launching my video series.4. Running Mt Washington Road Race in honor of my father & […]

  850. Lawrence on December 27, 2012 at 3:36 pm

    In some ways I’m looking to improving my eating habits, in part because I can no longer snack continuously between supper and bedtime. And, in turn not handle skipping breakfast in the morning like I used to (though I was routinely missing lunch during the few months that I was on Dex 🙂

    Also need to work on having an adequate breakfast that doesn’t result in me arriving just as late to work as before …

    And, I think my suppers should expand too…no more I’m home from work and all I want to do is sleep, so I’ll just have a bowl of cereal or a peanut butter sandwich before I crash.

    Sadly that means I can’t put off replacing the range any longer….which has been down to just two working elements for a long time now (only miss the oven when I have something big [I was home this year for thanksgiving, but couldn’t have a turkey], and I might want to get back into baking again.) But, day before I left for holidays…one of two remaining elements started giving me trouble.

    Of course, its the only appliance that was old (and abused) from when the property was apartments, that wasn’t replaced when it was remodeled into condos or since I’ve owned this condo….not including HW/AC/F….which I should do something about soon too 🙁

  851. Tara on January 1, 2013 at 2:40 pm

    Thank you so much for sharing your book for free today! There is no way I could buy it – I know the price isn’t high or anything, just being out of work for the last three + years is definitely taking a toll. Thank you so much!!!

    • julie on January 1, 2013 at 2:44 pm

      Thank you for checking out my book, Tara! Happy New Year, Julie

  852. Bill Olcott on January 1, 2013 at 3:36 pm

    Julie, I just yesterday discovered you, your site and the videos. A Wonderful gift to help others understand our strange illness. Thank You! I’m not real sure when my illness started to show itself, but like you it was the cataplexy that lead to an actual diagnosis. I too, started to feel the response in my knees when I was laughing, and it became frequent enough I began to become concerned. I am an educator and was preparing to teach my students about mental health assessment and diagnosis. Going through the DSM IV, I discovered the definition of cataplexy and there it was! Went through a sleep study and was diagnosed.

    • julie on January 1, 2013 at 4:26 pm

      Hi Bill, Thank you for checking out my blog and videos. Sounds like we have lots in common. The journey to diagnosis with narcolepsy is often challenging. Check out my recently published, Wide Awake and Dreaming memoir. I think you’ll relate a lot. Happy New Year, Julie

  853. […] 2013 , I aim to: “aggressively pursue happiness – to balance the challenges of chronic illness.”  So, to kick start the new year, I’m sharing my top 13 inspirational quotes, releasing one […]

  854. […] REM Runner’s Inspirational Quote #13Check back soon for more! /* Cancel reply […]

  855. […] Previous post: REM Runner’s Top 13 Inspirational Quotes – #12 Great People […]

  856. Gail Pean on January 5, 2013 at 2:17 pm

    I love Julie’s inspirational quotes. Today is her book launch at my home 4-7pm. Come hear Julie read from her Memoir “Wide Awake and Dreaming” just RSVP to gaipean@gmail.com. Get your signed copy today. One day Julie will be a famous author.

    • julie on January 9, 2013 at 3:00 pm

      Thank you so much for your support, Gail! Looking forward to blogging about out book launch party soon.

  857. Julia Glazer on January 5, 2013 at 3:53 pm

    I love that quote!! You are an inspiration and your book is fabulous!

    • julie on January 9, 2013 at 3:00 pm

      Thank you so much, Jules! I’m so glad you enjoyed my book! Love, Jules

  858. Kim on January 9, 2013 at 4:34 am

    I so wish I heard it was on sale earlier! I my self do not have n/c but my boyfriend of 3 years does. Im always looking for ways to understand what he goes through and more ways of understanding narcolepsy at all!!

    • julie on January 9, 2013 at 2:58 pm

      Hi Kim, Thank you so much for looking for ways to understand your boyfriend’s experience. This is so invaluable! The book and e-book are on sale via Amazon. Please check it out, it’s a quick fun read. Subscribe to my blog or like my Facebook page for future updates. 🙂 Big smiles and many thanks, Julie

  859. Alex Withrow on January 9, 2013 at 10:51 pm

    I think not receiving support from the people closest to you is very unfortunate, and unfortunately very real.

    Great advice on how people can cope with this. I really think the lack of support from loved ones is something that a lot of people have trouble dealing with.

    • julie on January 9, 2013 at 11:04 pm

      Thank you, Alex, for being one of my greatest supporters. I’m so glad you like this post.

  860. Jill on January 9, 2013 at 11:34 pm

    It seems that non-support often stems from people not understanding. When I mention I have narcolepsy and explain, “It means I am excessively tired during the day and have a hard time staying awake” a lot of people respond in some variation of: “Yeah me too! It’s seems I’m always tired! Oh well, that’s what coffee’s for!” or I get people who respond with remedies like, “Oh, well I bet you don’t have a regular sleep schedule. You know if you’d just go to bed at the same time every night you’d feel fine.”

    So I stopped telling people I have “narcolepsy”. It’s like most people don’t have a point of reference for “Narcolepsy” so they just don’t understand. But if it comes up and I say something like, “I have a disorder. My brain is always trying to put my body to sleep during the day. So I constantly feel like I am about to fall asleep…all day long.”

    I have had much better luck with this. People seem to understand “Broken Brain” better than “Narcolepsy”. Then if the person asks for details I’ll get into it and that’s when I can introduce the term “Narcolepsy”. Once I have their calm attention, I can usually bring understanding and they follow with support. Otherwise, they seem to make a quick judgement that I’m just ‘tired’ like everybody else.

    • julie on January 10, 2013 at 3:06 am

      Great point, Jill! This seems like an awesome way to help people understand. Thanks for sharing your strategy!

    • cindy on January 10, 2013 at 3:53 pm

      Thanks Jill! I’m getting so tired of the same old comments as well! I am definitely going to try your latest technique in the near future.

      • julie on January 10, 2013 at 6:09 pm

        Hi Cindy, Thanks for your comment. I agree, great suggestions from Jill!

    • Tamara Sellman on January 22, 2013 at 12:24 am

      Hi Jill
      I can very much relate to your reasoning behind NOT telling people you have narcolepsy. Suddenly, *everybody* has narcolepsy! Which is silly, of course. It’s more rare than that. Until I was diagnosed, I pretty much thought my sleep issues were due to being a busy working mom. Who isn’t tired, right?

      I, too, have taken to calling my condition/s my “sleep thing” (like Julie’s “knee thing” and “head thing,” LOL) and being more descriptive about the condition so that people ask questions and realize that there’s a huge difference between falling asleep because you’re sleep deprived and having a sleep attack.

  861. Deb on January 10, 2013 at 5:56 pm

    Wow Julie, you’ve read my mind.
    I really try not to let it bother me but it can feel hurtful when friends utter those words ‘yeah I know exactly how you feel, I love my sleep too’!!
    I try to convince myself that there’s no thought involved in their response and that what they say is to just make conversation.
    I think this has been the most difficult part to deal with.
    Luckily I have some amazing and supportive friends who have taken the time to listen and they accept that my daily limitations differ from theirs. These friends are the ones my energy goes on.

    Great suggestions above.

    • julie on January 10, 2013 at 6:09 pm

      Thanks for reading my blog and commenting, Deb! It’s good to know that we are not alone in this struggle. Here’s to celebrating our supportive friends! Big smiles, Julie

  862. Alex Withrow on January 10, 2013 at 8:03 pm

    Great pictures of a great day! Congrats, Fly!

    • julie on January 10, 2013 at 9:35 pm

      Thank you, Alex for your photos and on-going support. I’m the luckiest…

      • Elaine Butler on January 11, 2013 at 9:14 am

        Great photos…onwards and upwards…a movie of your book next !!!

        • julie on January 11, 2013 at 12:36 pm

          Thanks, Elaine! Onwards and upwards, indeed. Thank you for your support.

  863. Mindy Nelson on January 11, 2013 at 2:51 pm

    Julie, I agree with Jill. My 18 year old has Narcolepsy and people make these same comments to me like I am not “teaching” my daughter the proper sleep techniques. I am also an R.N. so my approach now is “my daughter had a neurological disorder affecting the hypothalamus called Narcolepsy.” That gets people’s attention and very little negative silly comments. Most people are either shocked into silence or very interested and wanting to know more. My daughter is now using that approach as well. As far as unsupportive family and friends, they have been left in the dust. Her true friends (old and new) and a few family members that have supported our daughter have forged closer and more meaningful bonds with her than ever before. Mindy

    • julie on January 11, 2013 at 4:15 pm

      Thank you for your comment, Mindy! This is a great approach – thank you so much for sharing. I’m so glad to hear that your daughter has forged closer more meaningful bonds with supportive friends.

      I discuss ideas for successfully communicating narcolepsy in: Pause and Nod, The F-Word, and in my YouTube narcolepsy video series.

      In this post, I hoped to comfort PWNs when sometimes, despite one’s best efforts, a friend or family member refuses to listen or acknowledge one’s condition. I would’ve liked to know when I was first diagnosed that I deserved support and would find wildly supportive friends with time. Big smiles, Julie

  864. Catherine on January 11, 2013 at 3:51 pm

    Must be such a great feeling to have so much support and to fulfil your dream on becoming a published writer. Congratulations and Thank you for being such an inspiration. This is the first book I have read on someone’s personal experience and what an amazing journey it was. Even though I am yet to meet someone with Narcolepsy this book has made me feel like I am not alone… I am trying to convince everyone who is close to me to read it 😀

    • julie on January 11, 2013 at 3:53 pm

      Thank you so much, Catherine. I’m so glad you enjoyed my book. You are not alone in this journey. Sending big smiles and wakefulness your way, Julie

  865. Rachel Bancroft on January 12, 2013 at 2:02 am

    Julie,

    I recently read your book and loved it. Thank you so much for sharing your story. As a PWN for 25 years, your story brought tears and strong emotions for me. I spent many years struggling undiagnosed, wondering what the heck was wrong with me, and feeling like I was just expected to buck up and pretend my symptoms didn’t exist. How I managed to graduate from college and work full-time is a wonder to me, but I’m grateful I did! I’m now a stay-at-home-mom and it has only been in the last 4 years (since diagnosis) that I’ve been able to better manage this illness, learn to accept my limitations and work on overcoming the depression that comes with narcolepsy. I find it a journey and challenge to accept and understand my illness yet not let it completely define me. Thank you so much for raising awareness about narcolepsy and compassion for people with narcolepsy. You are doing amazing things!

    Rachel
    Beaverton, Oregon

    • julie on January 14, 2013 at 10:31 pm

      Hi Rachel,

      Thank you so much for your kind comment. I’m so thrilled that you enjoyed my book. It’s truly an honor to raise awareness, thank you for your support.

      Your story is so inspiring – what you overcame to graduate from college and work full-time while battling undiagnosed narcolepsy, wow!

      Sending big smiles and wakefulness your way,
      Julie

  866. Holly Twedt on January 15, 2013 at 2:20 am

    How very true totally relate! But I also remember I am a work in progress reaching high to a new level of living not critical of self but accepting of who I am and who I will become on the journey! Not by myself but with the help, love,
    and support of others who are with me on my healing journey!

  867. Jenny on January 16, 2013 at 1:27 am

    This makes me wish I lived closer to D.C. I recently finished your book and was thrilled to find someone I could really relate to with dealing /living with narcolepsy. I have been diagnosed since I was 12 – now I am 32 and have coped really well- with the help of loving and supportive family but it has only been in the last two years that I have met others with it and gone to a few support group meetings. If you have any suggestions about folks to connect with in Boston/Providence area- I know you used to live here- I would love any suggestions. Thank you for being such an inspiration through your blog/book and all your advocacy work. I hope one day we can meet- I have become a big fan. I hope that I can attend a NN conference soon too, but it hard between $$ and my job but I will keep dreaming literally and figuratively!!
    Take care and thanks again,
    Jenny

  868. Bill Olcott on January 17, 2013 at 1:35 am

    Just finished your book. Wonderful job!! Your story helped me realize and better understand some of the experiences I’ve had. I probably had the illness as an adolescent, although a fairly mild case back then – I would have probably been diagnosed as ADD, but back then ADD hadn’t been identified. As I aged the illness progressed slowly, and it wasn’t until I was 49 yrs old that the cataplexy intruded into my life and we discovered the diagnosis. One of my dreams was to earn a college degree, I had been drafted into the Army in my second year at Indiana University. I enrolled at UW-Green Bay and did earn my Bachelor’s degree in May of 2011 – I was 64 years old. Thank you for a great book (I down loaded it onto my computer from Amazon on the 1st of January). Best wishes, Bill

    • julie on January 17, 2013 at 12:58 pm

      Hi Bill, Thank you so much for reading my book. I’m so glad that it helped you better understand some of your experiences. I’m so sorry to hear that you’ve had narcolepsy for so long undiagnosed. CONGRATULATIONS on earning your Bachelor’s degree in 2011. What an inspiring story! With gratitude and smiles, Julie

  869. Laura on January 19, 2013 at 8:29 am

    I had an especially tough day earlier this week, and e-mailed a good friend to complain that no matter how hard I tried, I just couldn’t seem to keep everything together. I kept at my day, took a nap, and eventually things started looking up. Later that day there was an encouraging reply from my friend, who shared with me that from her outside perspective, she thought I was doing an amazing job at handling what had been thrown at me. She works with people with chronic illness, so I felt like that gave her some extra credibility for that particular compliment. 🙂

    It was good to be reminded of my own strength. Sometimes it’s hard to feel strong from inside a body that isn’t able to do some of the things that it used to be able to do so easily, and, like most people, I tend to be my own worst critic. But, I’m with you on this one–it takes something a lot stronger than super glue to keep holding things together!!

    • julie on January 28, 2013 at 6:18 pm

      Thank you for your comment, Laura! This is an inspiring example of overcoming adversity daily. Cheering for you! -Julie

  870. Tamara Sellman on January 22, 2013 at 12:20 am

    Thanks for this post, Julie. I wish I had seen it almost 3 years ago when I came home from a consult with my doctor, having learned that I had very mild narcolepsy and UARS.

    I remember vividly driving to that appointment, then taking a nap in the parking lot until I had to go to the appointment, as I had nearly fallen asleep on the 45-minute drive there!

    At any rate, within two weeks I discovered very quickly that people will quickly mock or gloss over what they don’t understand, even those who you would expect compassion from (in particular, I remember a personal trainer friend of mine saying, “Well, at least it’s not cancer!” while shrugging cheerfully).

    Why is cancer or a “visible” problem worthy of compassion but an “invisible” condition like narcolepsy (or, for my friend, MS) not as deserving?

    My Dx led to me making a huge life change in my career field (I was a freelance editor; now I am, at age 48, studying to become a sleep technologist!). To me this resonates as a blessing in disguise but the problem of ignorance to sleep disorders continues to challenge my patience.

    Unfortunately even the good people in our lives need continuing education, especially about matters of the brain.

    The fortunate news is that neuroscience is catching fire. While I’m not thrilled with the current focus on brain-training (I think of it as a marketing gimmick more than a useful therapy), I am thrilled that people are starting to consider the brain a thing to care for, like the heart or the skin.

    Eventually I hope we’ll be able to break down the walls that enclose the mysteries of the brain in a way that people will finally stop judging these “invisible” conditions as matters of mental will and not the truly devastating physiological processes they really are.

    Julie, I’m loving your book so far. I can *so* relate to the challenges of dealing with the nuisance and downright dangers of irresistible sleep!

    Tamara Sellman, student and blogger
    http://www.sleepyheadcentral.com

    • julie on January 28, 2013 at 6:22 pm

      Hi Tamara, Thank you so much for joining in the discussion on narcolepsy awareness! You are an inspiration. I’m hopeful that narcolepsy will gain the respect it deserves. We are just getting started. Thank you for checking out my book. I hope you enjoy it! With gratitude, Julie

  871. ashley on January 22, 2013 at 4:52 pm

    Reading Julie’s book was comforting to me. I felt like I was staring at the pages of my life. For once my condition was explained and put in perspective. At times when my narcolepsy was causing me to have a bad day I would turn to Julie’s book. My loved ones also read the book. It helped them to better understand the struggles I face on a daily basis.

    • julie on January 22, 2013 at 4:55 pm

      Ashley, Thank you so much for reading my book, Wide Awake and Dreaming. I’m so glad it was comforting and helped your loved ones better understand your struggles. We are in this together, one step at a time, building a brighter future for narcolepsy. Big smiles and many thanks, Julie

  872. Emilee on January 26, 2013 at 4:26 pm

    Julie, can’t wait to see the videos!!!!

    • julie on January 26, 2013 at 4:37 pm

      Thank you, Emilee! I can’t wait to share the videos soon.

  873. Gail Pean on January 28, 2013 at 2:50 pm

    Congratulations Julie! It was an honor to host your book launch at my home and meet so many brave people with Narcolepsy. You are helping so many with your courage and memoir.

    • julie on January 28, 2013 at 6:19 pm

      Thank you for your incredible support, Gail! The book launch party was truly the best day EVER!

  874. Meredith on January 30, 2013 at 6:15 pm

    Thank you for this post. I just lost my father too, and have been looking for answers about why my body is doing everything it is right now. I feels like I am being repeatedly kicked in the gut.

    • julie on January 30, 2013 at 6:18 pm

      Meredith, I’m so sorry to hear about your father’s passing. I wish I could take this pain away, I wish it was a fast process, but I’ve found my grief comes and go in waves. Stay strong. Sending peace and big hugs your way, Julie

  875. Mark Patterson, MD, PhD on January 30, 2013 at 9:21 pm

    I agree, Julie, it is frustrating when we doctors prescribe what we think is the best medication for a patient, only to have the insurance company deny its use. Often the reason is because the medication is not on the patient’s formulary. Unfortunately, neither the patient nor the doctor has any say in what goes on the formulary. If you are denied a medication that your doctor thinks you need, appeal, appeal, appeal!

    • julie on January 30, 2013 at 9:28 pm

      Thank you for your insightful comment, Dr. Patterson! Your advise to “appeal appeal appeal” reminds me of the extreme importance of being one’s own advocate in the current healthcare system.

  876. James Fadden on January 31, 2013 at 11:32 am

    “Off label” use is often the standard of care for many conditions. Not prescribing (and paying for) such off label use would be sub-standard care.

    Off-label use and the medical standard of care

    http://www.lexology.com/library/detail.aspx?g=84019ee9-11f8-4c73-a503-b44922e1c3e0

    Off-Label Uses Held “Medically Accepted” As A Matter Of Law

    http://druganddevicelaw.blogspot.com/2011/03/off-label-uses-held-medically-accepted.html

    • julie on January 31, 2013 at 2:25 pm

      Great point, Jim! Thanks for adding this comment.

      In addition to nearly all pediatric patients being prescribed drugs off label – up to 90% of all rare disease patients take drugs off-label. 60% of cancer patients receive at least one drug off-label. 80% of AIDS patients receive off-label treatment. 23% percent of pregnant women in their third trimester take at least one drug off-label. Thus, off-label drug use fulfills substantial interests in our current health care system.

  877. Alex Withrow on January 31, 2013 at 3:23 pm

    This is a fascinating, extremely well articulated post, Julie. A post like this could really help many people (children, their parents, etc) who are struggling to secure specific treatments.

    Well done!

    • julie on January 31, 2013 at 3:29 pm

      Thank you, Alex! If the post helps just ONE family better understand their child’s medication situation – it will be worth it. 🙂

  878. Sanya on January 31, 2013 at 4:57 pm

    I agree. At the same time, we have to be willing to do our part to get these meds approved. My son and I both have narcolepsy. I did not qualify for the adult study in our area, but he qualifies for the pediatric study. We are now in the process of setting up his appointments. I was surprised and disappointed to hear how few participants there are due to their parents’ unwillingness to have them miss sports activities, etc. Having experienced the misery of growing up with narcolepsy, this saddens me…I want there to e an answer for our children…and a better one than Ritalin!

    • julie on January 31, 2013 at 5:26 pm

      Hi Sanya – thanks for your great comment. Thank you so much for actively participating in trials. Once the drug company initiates a drug trial, patient participation is invaluable – so many thanks sent your family’s way!

      Personally, I’ve taken part in a few university-sponsored narcolepsy studies. One study in particular was a bit invasive, but I was determined to participate. It’s been SO rewarding to hear research updates from these scientists later and realize that my contribution is building a brighter future for narcolepsy.

  879. Sanya on January 31, 2013 at 5:39 pm

    Thank you, Julie! I am so grateful for and inspired by your website! I’m a newbie here, but I’ve been living with narcolepsy for 44 yrs…not diagnosed until 35 yrs old…for me, it wasn’t an onset…it was an explanation of my entire life!

  880. […] Watch AllWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  881. […] #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: […]

  882. […] Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  883. […] Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  884. […] AllWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle […]

  885. […] about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  886. […] and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about […]

  887. […] and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: […]

  888. A Panic Attack & Moment of Gratitude on February 4, 2013 at 5:00 pm

    […] – great minds think alike. Check out my previous post “Blindsided: Navigating Life’s Construction Zones.“ /* Cancel […]

  889. Jill on February 4, 2013 at 6:28 pm

    OMG! That must have made for a tough weekend! Glad everything is ok. Phew!

    • julie on February 4, 2013 at 8:14 pm

      Thank you, Jill. I’m so relieved. Ever onward! 🙂

  890. Kate on February 6, 2013 at 3:55 am

    I’m sooo thankful your story had a happy ending that didn’t require hours and hours of phone calls and petitioning and legwork just to end up back with the same insurance company!!

    And, I too love Martha Beck. Glad I’ll be getting my O subscription back shortly.

    • julie on February 6, 2013 at 3:33 pm

      Kate: I’m so glad this didn’t turn into an epic battle too! Reminds me that NOT fighting an epic battle this week is a joy. 😉 Oh yes, Martha Beck is a genius! Love her. Thank you so much for reading and commenting on my blog! Big smiles, Julie

  891. Janice Brennan on February 6, 2013 at 6:16 pm

    Hi Julie,

    Thanks for posting this. I don’t live in the DC area but have family there and am trying to get someone to go to this meeting. Is there any chance they will videotape it? If you could post some advice on your blog that would be great too.

    My son was diagnosed with narcolepsy last summer and I am starting the process of getting a 504 plan approved for him.

    Your blog and facebook page have been a wonderful resource for me who is new to this disease. Thanks!!

    • julie on February 6, 2013 at 6:27 pm

      Hi Janice,
      I *believe* the meeting will be video-taped and streamed online around the world! I will post details on my blog and facebook as soon as I know more.

      I’m so sorry your son was recently diagnosed w/ narcolepsy. Thank you for supporting his experience, this is invaluable for his success living with narcolepsy.

      Thanks for following my blog and Facebook page! With gratitude, Julie

  892. AshLynn on February 9, 2013 at 3:34 am

    Will this be aired at another time as well? I have a prior commitment and won’t be able to phone in or watch. My daughter was diagnosed with narcolepsy last December. We have a 504 plan in place at her school. Thanks;)

    • julie on February 10, 2013 at 5:41 pm

      Hi AshLynn, Thank you for your interest in the Narcolepsy in the classroom event. It will be available online sometime next week. I will publicize on my blog as soon as it’s available.

      • AshLynn on February 18, 2013 at 9:26 pm

        Thank you very much:)

  893. Nancy Waldman on February 10, 2013 at 6:03 am

    HI Julie, I will check your blog to see if the talk was videotaped. My daughter is in 7th grade and has narcolepsy with cataplexy. It has been a challenge and I’m not sure what accommodations would help her in school. She struggles with fatigue, attention, cataplexy and hunger. I look forward to watching the video.

    • julie on February 10, 2013 at 5:44 pm

      Hi Nancy, I’m sorry to hear that your daughter has narcolepsy with cataplexy in the 7th grade. I can imagine it is very challenging. My thoughts are with you and your family. The video will be online sometime next week and I will share on my blog. Thanks again, Julie

  894. AI on February 12, 2013 at 10:27 am

    Shared with Mum, Narcolepsy group and all my friends.

    I’m almost finished the book now and I’m keen to get my family and friends to read it. It describes Narcolepsy with Cataplexy (and all the trimmings) with stunning accuracy. I love the story too.

    Thank you again, Julie!

    • julie on February 12, 2013 at 1:42 pm

      Thank you so much for reading my book and sharing with your community! This means so much to me. With gratitude,Julie

  895. Kate Davies on February 13, 2013 at 3:57 am

    Hi Julie,

    I have just finished reading your amazing book! I haven’t completed a book in over twenty years, this one I could not put down! It took me through lots of emotions, made me smile, made me cry. I have sticky notes sticking out from lots of the pages where you say exactly what I feel and can relate to, it is so good to not be alone at last! I have had narcolepsy and cataplexy for the last three years, a lovely 40th Birthday present thanks to swine flu!

    Spookily I also used to run too, not marathon stuff though, you must be so proud!!

    I shall be taking the book to show my neurologist so he can recommend to patients! I need my friends and family to read it so they can understand the ‘new’ me!

    I sincerely thank you!

    Kate

    • julie on February 13, 2013 at 2:54 pm

      Hi Kate,
      I’m so sorry to hear that you’ve had narcolepsy with cataplexy for the past 3 years. I’m so glad my book could provide some solace – you are not alone and you’re overcoming adversity daily. That’s wonderful that you will bring the book to your neurologist and share with friends and family. Let them know about the free promotion tomorrow (Valentine’s Day)!
      Sending wakefulness and smiles your way,
      Julie

  896. […] Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* Cancel reply […]

  897. […] and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: […]

  898. […] Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* Cancel […]

  899. […] Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: […]

  900. […] about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* Cancel […]

  901. PWNYBeads - Julie Ann Funk on February 15, 2013 at 7:49 pm

    Thanks for the awesome write-up, Julie! <3 <3 <3

    • julie on February 15, 2013 at 7:51 pm

      You’re very welcome! I meant every word. Big smiles, Julie Fly

  902. karl on February 16, 2013 at 11:49 pm

    Julie
    Thank God you are still young. You think narcolepsy’s bad? Wait until you’re 50 or so. It’s good you got the book written now and have achieved so much. I recall my 20s and 30s when I got got my masters, did the peace corps and fought forest fires. You need to get your adventure, etc. done while you can as the slide downhill is slow and unrelenting. Good for you. Keep up the good work.
    Karl

    • julie on February 19, 2013 at 1:37 pm

      Thanks for checking out my video and commenting, Karl. Sending wakefulness and big smiles your way, Julie

  903. Cheryl on February 19, 2013 at 1:14 am

    Hi Julie,
    I have beem wondering if there is any news on the FDA initiative?
    I read your book from beginning to end yesterday, what a powerful way to make others aware of what PWN go through..

    • julie on February 19, 2013 at 1:40 am

      Hi Cheryl,

      Thank you so much for reading my book! I’m so glad you felt it was a powerful way to make others aware of narcolepsy. That’s my greatest hope.

      No updates on the FDA initiative but I will be attending a meeting in a few weeks at FDA and hope for an update then.

      With gratitude and smiles,
      Julie

  904. Angie on February 19, 2013 at 3:05 pm

    I’m so glad this was an error, Julie. My heart dropped when I read the first 2 lines of this post. I would have been a basket case…

    • julie on February 19, 2013 at 3:07 pm

      Thank you, Angie. I know – my heart dropped too, reading the original email message and waiting all weekend to find out what had happened… So thankful not to have to face an insurance battle today. 🙂

  905. Liz on February 19, 2013 at 5:27 pm

    Love it!
    I’ve had my own lobster moments, and old lobster friends.
    Hope to embrace the simple yet fitting attitude you portray here.

    • julie on February 19, 2013 at 5:33 pm

      Thank you for reading my post and commenting, Liz. I think we all have our lobster moments, at least I hope I’m not the only one! 😉 It’s really freeing to realize that my own success doesn’t correlate to anyone elses. We are each on our own journeys. Cheers, Julie

  906. PWNYBeads - Julie Ann Funk on February 19, 2013 at 6:42 pm

    We’ve all had those moments, and we all will again. It’s learning to manage them and take a step back and realize the things you posted about here that really matters. There really /is/ enough to go around. If you push and do your part to make your way, you can have all the success that you deserve. But if, instead, you choose to mope around in the jealous sea, you deserve what you get in that case, too.

    Though, I will say, I’m jealous of /anyone/ who eats lobster. If I eat it, I have to go to the hospital. (Blargh for food allergies!) Unfortunately, no matter what I do, I can’t make /that/ go away! 😉 <3

    • julie on February 22, 2013 at 3:53 pm

      Julie – Thank you so much for your comment. Here’s to stepping out of the jealous sea and continuing to pursue our passions. Your amazing jewelry design work inspires me!

      Lol about the lobster analogy. I’m so sorry to hear of your allergy. No lobsters for you and in this case, you get a free pass to be jealous. 😉

  907. Melissa Burton on February 21, 2013 at 4:41 am

    Julie: Just finished your book and loved it. I’ll admit it.was extra special to see that you have featured Taylor’s book when I go to.check.out your blog. I’m.a recent NYC transplant in CA and Prana Power Yoga is one of my favorite NYC yoga studios ever!

    I’m happy to have discovered your book and your blog. As a dietitian, yoga lover, and injured runner, I know I’ll be back to read more.

    • julie on March 1, 2013 at 12:11 am

      Melissa, I’m SO glad that you enjoyed my book and blog! Also, so glad to hear that Taylor Wells’ yoga studio is one of your favorites! She’s the best. Thank you for supporting my efforts and I’m so glad you’ll be back for more. Also, I love your blog too! Big smiles and many thanks, Julie

  908. Holly Twedt on February 21, 2013 at 8:39 am

    Julie,

    So relate to this as my father and I were very close and did things together. Feel He is still with me cheering me onto my own finish line!
    Thank you for sharing!

    Holly Twedt

    • julie on February 21, 2013 at 1:11 pm

      Hi Holly,

      Thank you so much for reading my post and commenting. I think our fathers are definitely still cheering us on!

      Big smiles,
      Julie

  909. Alex Withrow on February 22, 2013 at 3:46 pm

    Really great post here, Julie. There are plenty more lobsters in the sea, indeed. It takes a particular set of skills to not be jealous by the success of others, but rather embrace the good that they’re doing.

    So glad Taylor’s book was an inspiration to you!

    • julie on February 22, 2013 at 3:56 pm

      Thank you, Alex! I am very grateful for your whole-hearted support of my efforts and I absolutely am in awe of your many talents and success.

  910. Mark Patterson on February 24, 2013 at 7:56 pm

    This is great, Julie. You have truly inspired a nationwide movement! Thanks for all of your hard work and dedication in spreading the word about sleep disorders, especially narcolepsy. See you in DC!

    • julie on February 24, 2013 at 9:42 pm

      Thank you so much, Mark! Can’t wait to see you next weekend!

  911. Bridgette Snyder on February 24, 2013 at 9:20 pm

    Thank you for the inspiration and support, Julie! Together, we can make your dream and the dreams of every PWN happen!

    • julie on February 24, 2013 at 9:41 pm

      Thank you so much, Bridgette! I really wish I could join you in Waikiki! Can we make that dream vome true next year maybe?! 😉 Big smiles and many thanks, Julie

  912. Alex Withrow on March 1, 2013 at 4:37 pm

    That’s so great that you were able to represent the narcolepsy community at this research advisory board.

    So proud of you!

    • julie on March 1, 2013 at 4:54 pm

      Thank you, Alex! It’s such an honor to represent narcolepsy on the NIH advisory board. 🙂

  913. PWNYBeads - Julie Ann Funk on March 1, 2013 at 11:44 pm

    Once again, thank you so much for everything that you do to represent us PWN! I, for one, greatly appreciate how much work you do for the rest of us! You’re an inspiration! <3

    • julie on March 2, 2013 at 4:58 pm

      Thank you, Julie Ann! Your support means so much to me.

  914. JudePNP on March 2, 2013 at 9:12 pm

    I live in a whole family of narcoleptics, most with cataplexy. My oldest daughter is now 19 and had symptoms from age 11; My second daughter also some behaviors starting from age 2, but was not significantly affected until age 12; My 3rd daughter was the energizer bunny until the fall she turned 14. Her onset was far more sudden than her older sisters. She also has insane leg muscle fasciculations when she sleeps. She has had the most difficult time of them in terms of interfering with school work because she has the double sleep whammy. My youngest daughter is 11 and showed some signs of blending sleep/wake cycles early on and is now becoming more significantly affected. I am also narcoleptic as was my father. We apparently carry the gene marker for narcolepsy and none have escaped expressing true symptoms. Sleep paralysis, automatic behaviors, sleep walking and acting, sleep eating, sleepiness, blending dreams with waking state and cataplexy are just a few of the issues we experience on a daily basis. Interstingly, my grandson at just a few months of age is exhibiting signs of cataplexy. He’s a very good natured baby. The times I have seen him actually cry hard….he instantly goes to sleep. There’s nothing to do about it right now, but I have a sleep neurologist looking at him to make sure we do everything we can. There is some evidence, he says, if you catch it early, you might prevent some of the progression. We’ll see.

    Oh, my third daughter’s school and teachers have been AMAZING, with their understanding. They push her to do her best and don’t give her excuses, but completely believe her when she goes through an episode and misses things in the classroom. There was a time when teachers who were aware were quick to embarrass her if she nodded off in class as though that would be helpful in preventing the sleep attacks.

    Is anyone dealing with narcolepsy and deciding on driving for a teen ager? In some states it’s illegal to drive with narcolepsy, but ours isn’t one of them. I’d love to hear you thoughts.

  915. Chelsea on March 3, 2013 at 12:30 am

    Julie,
    I want to echo the other’s comments – Thank you SO very much for representing PWN (myself included). Your strong presence and profound knowledge and understanding uniquely qualify you to be the voice for those of us whose voices normally go unheard.

    Thanks again and keep up the important work!

  916. […] be hot topics. I can’t wait to visit the Broadminded Broads again. Hear my previous interview here. /* Cancel […]

  917. Julie Flygare Represents Narcolepsy at FDA on March 3, 2013 at 11:15 pm

    […] fall, I led the campaign urging FDA to include narcolepsy in this 20 disease innovative program (read more here). I testified at the FDA hearing and hundreds of narcolepsy advocates sent in comments of […]

  918. Angie Meehan on March 4, 2013 at 12:42 am

    Thank you so much Julie for your outreach to help find better management/cures for narcolepsy. You are so invaluable to me and everyone else. God bless you and keep you in his care!
    Peace and Love,
    Angie Meehan

    • julie on March 4, 2013 at 12:46 am

      Thank you so much, Angie! It’s my pleasure.

  919. Nellie on March 4, 2013 at 4:19 pm

    I can’t wait to hear the results!!

    • julie on March 4, 2013 at 10:11 pm

      Thank you, Nellie. Me too. Fingers crossed for narcolepsy!

  920. Makky's Mom on March 4, 2013 at 6:27 pm

    Thank you Julie, for representing us and for the update. I’m so happy to see all the attention narcolepsy is receiving these days. Just this past weekend, I attended a Workshop Presentation on Childhood Narcolepsy at Toronto Sick Kids Hospital. It humbles me to see all the doctors and scientists that have chosen to make beating narcolepsy their life passion.

    • julie on March 4, 2013 at 10:12 pm

      Thank you, Makky’s Mom! Narcolepsy is all the buzz in the scientific communities these days. I’m glad to help give the community a voice here in Washington too. Big smiles, Julie

  921. […] Christine and Molly. We talked about my book, love life, National Sleep Awareness Week and the National Sleep Walk! I hope you enjoy the […]

  922. […] Tomorrow morning, 3/4/13, at 7:30 a.m. EST, I will be interviewed LIVE on SiriusXM Radio’s Broadminded Show (Stars Channel 107). It re-airs again at 10:30 a.m. EST. Listen to the recording here. […]

  923. Dan Browne on March 5, 2013 at 5:06 am

    When I dial a number that answers me robotically I just keep pressing 0 until someone answers the thing. I don’t care if it’s the maintenance man, just someone.

    I have no patience for waiting on some menu…sleep is beckoning quickly.

    • julie on March 6, 2013 at 4:16 pm

      Thank you, Dan. Yes, persistence is the name of the game!! 🙂 -Julie

  924. Jackie Quinn on March 5, 2013 at 4:41 pm

    You mentioned in your radio interview that you will be in Dallas soon. Will you be giving a lecture or something regarding narcolepsy?

    • julie on March 5, 2013 at 5:20 pm

      Hi Jackie! Yes, I will be in Dallas for the Southern Sleep Society Conference speaking to sleep doctors and researchers about “The legal and employment ramifications of daytime sleepiness.” I will also be doing an impromptu DALLAS SLEEP WALK on Saturday March 9th at 11am. I will post details on my blog today. 🙂 Thank you, Julie

  925. […] Contact Me […]

  926. Chelsea on March 6, 2013 at 12:16 pm

    Julie,

    Thank you Julie!

    Crossing my fingers, arms, legs and toes!

    • julie on March 6, 2013 at 4:17 pm

      Thank you, Chelsea! I will let you know as soon as I get word. Big smiles and many thanks, Julie

  927. […] by julie on March 6, 2013 I was a guest on Forward Motion with Karen Allyn in January (MCM Channel 21). Re-cap and fun photos here. […]

  928. […] event kicked off my National Sleep Awareness Week efforts, followed by affiliate Sleep Walks in Dallas, Sacramento and Waikiki on Saturday March 9, […]

  929. […] kicked off my National Sleep Awareness Week efforts, followed by affiliate Sleep Walks in Dallas, Sacramento and Waikiki on Saturday March 9, […]

  930. Matt Landy on March 7, 2013 at 12:00 am

    3/6/13

    Julie:

    I don’t know how you get all of your energy, but you have pushed awareness of narcolepsy to levels I long thought impossible. Please keep it up on behalf of all of us.

    Matt Landy

    • julie on March 7, 2013 at 12:06 am

      Thank you, Matt!!

      This past week was a test of durability for sure. After the SLEEP WALK, my whole body ached with exhaustion – but it was in pursuit of something I truly believe in, which makes it worth it. 🙂

      Your support means so much to me!

      Big smiles, Julie

  931. Alex Withrow on March 7, 2013 at 3:01 pm

    HA, what an eventful day it was. Had a great time meeting everyone and taking pictures. Everything turned out perfect!

    • julie on March 7, 2013 at 3:07 pm

      Thank you, Alex! It was a great day.

  932. Melissa Burton on March 8, 2013 at 6:20 am

    You inspired me and I knew you and your story would inspire others. It’s good to be right about something like this. You deserve it.

    I wish you so much love, luck and happiness now and in the future Julie!

    I think the Erica Sara Design team are amazing people. They help further cement my belief that if you put good out, you get good back.

    xo

    • julie on March 8, 2013 at 5:42 pm

      Thank YOU for nominating me, Melissa!!

  933. Elaine on March 8, 2013 at 5:31 pm

    This is beautiful! What an honor!

    • julie on March 8, 2013 at 5:41 pm

      Thank you so much, Elaine!

  934. Krissy on March 9, 2013 at 9:53 pm

    Its beautiful! What an incredible honor!

    • julie on March 9, 2013 at 10:53 pm

      Thank you so much, Krissy. I agree, it’s such a beautiful necklace.

  935. Alex Withrow on March 11, 2013 at 9:23 pm

    There were nearly 21… THOUSAND reported ER visits for energy drink consumption in 2011?! That is very very serious – I had no idea it was that bad.

    Great post here Julie, your passion for taking naps seriously is evident in every word of this piece.

    • julie on March 11, 2013 at 10:08 pm

      Thank you for your support, Alex. I gave this post “gusto” because I often hear the other side of the argument, but rarely hear loud voices supporting sleep and napping. 😉

  936. Bridgette Snyder on March 12, 2013 at 5:29 am

    Julie,

    I started a sleep disorder and health awareness petition on the whitehouse.gov website! Let’s get people to sign it!

    https://petitions.whitehouse.gov/petition/raise-awareness-sleep-disorders-and-importance-sleep-health/hQgWnNqM

    • julie on March 12, 2013 at 12:57 pm

      Awesome! I love this and will promote it today. Go, Bridgette, Go!!

  937. Mira Bishop on March 12, 2013 at 3:23 pm

    Narcolepsy is a serious sleep disorders. The effect of narcolepsy on its victims is devastating.

    • julie on March 12, 2013 at 4:02 pm

      Thank you for this important comment, Mira. I agree 100% and hope this petition will help America take sleep disorders like narcolepsy seriously. Thanks for your support! Julie

  938. Melissa on March 12, 2013 at 10:58 pm

    When my kids were little and took daily naps, I often wished someone would “put me down” for a nap!!!

    • julie on March 13, 2013 at 1:57 am

      Thank you, Melissa! Yes, napping is nice, I hope we embrace it more as a culture or else I’m moving to Europe eventually! 😉

  939. […] February, Julie posted about the 3rd annual National Sleep Walk on her website and Facebook, reminding everyone to register and encouraging more participation. I […]

  940. […] perfected my “personal story” presentation which I’ve given many times, including last year’s SSS Meeting.  Although I was well-prepared and confident this year, it was still new territory. I enjoyed […]

  941. Mike Glen on March 13, 2013 at 5:10 pm

    Hi Julie,

    I think you’d get a better response to the signing of the petition if it was available on your site instead of on the White house’s site. People tend to steer away from giving the government anymore information than they have to. The way it’s currently set up, a person has to signup for access to the White House website before they can sign the petition. I won’t be signing up for access to the government website so, unfortunately, I won’t be able to sign the petition (and I really do want to).

    • julie on March 13, 2013 at 6:00 pm

      Great idea, Mike! I will consider something like this in the future. Cheers, Julie

  942. […] March 9, 2013, I hosted the first Sleep Walk in Dallas, TX! I was traveling to Dallas for the Southern Sleep Society Meeting and planned this event last […]

  943. […] friend, the lovely Julie Ann of PWNY Beads and her boyfriend agreed to join me, so I knew I wouldn’t be alone. Amazingly, 20 people […]

  944. Julie Ann Funk on March 13, 2013 at 6:10 pm

    Thank you SO much for organizing the Sleep Walk, Julie! It was so awesome getting to hang out in person and do the Sleep Walk with you and everyone else! (And I succeeded in snagging a new pair of shoes after we parted ways that afternoon! Next time I get to Sleep Walk with ya, no blisters!) Hugs!!! <3

    • julie on March 13, 2013 at 6:15 pm

      Thank YOU for joining me in Dallas and braving the walk pre-new footwear! It was such a joy to finally meet you in person. Thanks for my gummy bears too! What a treat. 🙂 JWN Fly

      • Julie Ann Funk on March 14, 2013 at 8:31 pm

        I just HAD to get you the gummy bears! Saddest Facebook update EVER!! 🙂 I just loved getting to meet you in person finally, and getting to sit and chat with you a while! Can’t wait until the next time we can sync up on a common location!

  945. Kelly on March 13, 2013 at 6:14 pm

    I had the same problem minus the not being able to move part. My entire life I would awaken to my dreams in my room. I would also sit up and have full conversations with people and not remember them. I called it crazy brain because they came when my stress level was high. Thank you for posting this blog. It has helped me deside that I need to let my network of friend and family on the secrets of Narcolepsy.

    • julie on March 13, 2013 at 6:17 pm

      Hi Kelly, Thank you so much for reading my blog and commenting! I’m sorry you’ve experienced this so much too. Thank you for sharing with your friends and family about narcolepsy! Big smiles, Julie

  946. […] was there – the first year, the second year and the third year. She has generously given her time, folding tables and key […]

  947. […] was there – the first year, the second year and the third year. She has generously given her time, folding tables and key logistical support […]

  948. […] was there – the first year, the second year and the third year. She has generously given her time, folding tables and key logistical support to help make each […]

  949. Julie Ann Funk on March 13, 2013 at 8:43 pm

    Cheers to Gail for being such a great presence in your life! Without amazingly supportive people, what would we do?!

    • julie on April 3, 2013 at 12:48 pm

      Thank you, Julie! So true – what would we do with out such amazing people in our lives?! 😉

  950. Karen Cartwright on March 13, 2013 at 9:44 pm

    Wished I could have joined you and my 3 family members pictured above. Thank you for all you are doing to bring awareness.

    • julie on March 13, 2013 at 9:56 pm

      HI Karen, Wish you could have joined us too! Thank you for your support. Cheers, Julie

  951. M on March 14, 2013 at 4:09 am

    Totally agree with Mike, so I won’tbe able to sign either.
    🙁

    • julie on March 21, 2013 at 7:43 pm

      No problem. We do what we can. Cheers, Julie

  952. Deborah on March 14, 2013 at 2:59 pm

    Good friends can get us through the good and the not so good. Cheers for a great friend!

    • julie on March 14, 2013 at 3:16 pm

      So true! Thanks Deborah for your comment.

  953. Ashley on March 16, 2013 at 1:02 am

    Beautiful story. It’s wonderful feeling supported and loved by such a great friend like Gail!

    • julie on April 3, 2013 at 12:48 pm

      Thank you, Ashley! I agree – it is wonderful to have such a great friend!

  954. Mark Patterson on March 20, 2013 at 5:12 pm

    Dear Elaine and Julie,
    Thanks so much for posting this report. I am so excited to see this international cooperative effort for rasing awareness and advocacy for narcolepsy. As a pediatrician it is heartbreaking to see anyone, but children especially, develop a chronic, life-altering condition. I hope that thru our combined efforts we can arrange for assistance for those dealing with this condition, help educate the public and medical community, and develop new treatment options. Thanks again for sharing your story!

    • julie on March 21, 2013 at 12:58 pm

      Thank you so much, Mark! We are truly a world coming together in support of narcolepsy and that feels great…. and powerful. 🙂 Cheers, Julie

  955. Natalie B on March 21, 2013 at 9:49 am

    Well done Elaine & Julie. You’re both a great inspiration to all families affected with Narcolepsy. As a parent of an 8 year old with N, its really hard to empathise with him, when I really haven’t a clue how it feels. You have both given me a huge insight into the daily struggles he goes through, and given me hope that, if managed well, then it shouldn’t stop him achieving anything he wants to achieve. Thank you both, and keep up the great work xo

    • julie on March 21, 2013 at 7:41 pm

      Thank you so much, Natalie. I’m so sorry to hear your 8 year old has narcolepsy. For possible insight on what it’s like inside the body of a person with narcolepsy, please consider reading my recent memoir. Your support of your son’s experience will help him succeed in life. With gratitude, Julie

      • Natalie B on March 21, 2013 at 8:22 pm

        Hi Julie – your memoir has been read with enthusiasm. It was not only educational for myself and my husband, but an eye opener for the extended family that rarely see Ben at his worst.

        • Elaine Armstrong on March 21, 2013 at 10:19 pm

          Hi all, finally I`m getting around to popping my head in to say Hello.

          1st off I would like to thank Julie for inviting me to share Irelands 1st Suddenly Sleepy Saturday Narcolepsy Awareness event with her and her followers. Julie has been such an inspiration to me and a true caring friend . She has lifted and caried me in more ways than one, through her blog, video messages, her book and we have been known to have the odd private discussion to share our feelings ..lol..

          Thank you Mark for your continuous support and all your effort also with raising awareness.

          Thank you also to Natalie. The very informative radio interview attached regarding the development of Narcolepsy in Ireland is by Natalie’s husband James and Eilis (members of S.O.U.N.D. committee).

          It is great that we are all communicating and supporting each other around the world and long may this continue.
          Thank You again Julie – a true Narcolepsy advocate and a true friend xxx

          • julie on March 24, 2013 at 4:00 pm

            Thank you, Elaine! Keep up the great work. Your friend and cheerleader, Julie



        • julie on March 24, 2013 at 4:01 pm

          Thank you, Natalie! I’m so glad my memoir has been helpful for you and your family. This means so much to me. With gratitude, Julie

  956. […] of the Sleep Disorder Research Center) recently discussed narcolepsy research with leading expert, Dr. Mignot (of Stanford University). This video provides a great overview of why narcolepsy develops in certain […]

  957. […] narcolepsy research! To learn more about NIH’s funding of upcoming narcolepsy treatments, read here. /* Cancel […]

  958. Gail Pean on March 22, 2013 at 3:50 pm

    Brilliant discussion of the causes of narcolepsy and sleep disorder research with the leading scientist in the field.

    • julie on March 24, 2013 at 4:01 pm

      Thank you for watching, Gail!

  959. Daniel Thomas on March 24, 2013 at 9:24 pm

    My name is Daniel Thomas, I’m 40 yrs old and I’ve been living with Narcolepsy with cataplexy for nearly 30 yrs. This is more then a sleep or sleepy disorder.I used to get warnings before I’d fall asleep when I was younger but now , most of the time I don’t.I have falling asleep walking , talking , driving which I don’t drive anymore,ive fell asleep on a roof , and grocery shopping. I’d wake up and be totally
    disoriented and somewhat embarrassed. I’ve lost every last job I’ve had because I was caught dozing off or sleeping and when I tried explaining my situation , I was let go because I was a safety risk. This disorder is so much more then just being sleepy . I started falling asleep uncontrollablely in 7 the grade to the point I was failed and removed from the school all together. Ive always been called lazy, sorry , a druggy , and many other unpleasant names throughout the yrs. So I learned early to avoid contact with others period. Ive never had any good results come from trying to explain my disability to others. They just compare it to themselves out Joe smo down the road.

    • julie on March 25, 2013 at 9:04 pm

      Thank you for sharing your perspective, Daniel. You have overcome so much adversity in your life and I’m cheering for you. Hang in there! Sending wakefulness and big smiles your way, Julie

  960. […] Michelle was a highlight of my year (videos here). Michelle is SO present in our every conversation – listening and responding thoughtfully. […]

  961. Alex Withrow on March 26, 2013 at 8:11 pm

    GREAT post, Julie. The inspiration you receive from these women is so very evident. It made for a very lovely post.

    That story about Ms. Switzer is just crazy. And really… that wasn’t that long ago. Scary.

    • julie on March 26, 2013 at 8:22 pm

      Thank you so much, Alex. You inspire me too, but sorry – no dudes allowed on this list. Thanks for all your support, Julie

  962. Elaine Armstrong on March 27, 2013 at 1:13 am

    Julie your four new video are superb, I have already shared them many times and will continue as they are a tremendious help, especially to those newly diagnosed and seeking acceptance. Great work once again !!

    • julie on March 27, 2013 at 2:46 pm

      Elaine: Thank you so much for watching and sharing these videos – especially with newly diagnosed and those seeking acceptance. Your support means so much to me, Julie

  963. Melissa on March 27, 2013 at 2:21 pm

    In 1950, childbirth was still the leading cause of death in women. Not sure how that could be studied on young white men!?!?
    Inspiring profiles Julie. Thanks!

    • julie on March 27, 2013 at 2:26 pm

      Thank you for this insightful comment, Melissa. I’m so glad the biological and genetic differences between men and women are now being recognized/studied. My, how times have changed!

  964. Melissa on March 27, 2013 at 2:42 pm

    Wow, those are great videos Julie. I am really impressed by how eloquently you speak. Those are really going to benefit a lot of people!

    • julie on March 27, 2013 at 2:45 pm

      Thank you so much for watching these! I don’t like hearing myself speak (self-critical habits die hard) so I’m very glad I sound eloquent to you! 😉

  965. […] – leading the way for other women to optimize their health and triumph over adversity. Part I highlighted leaders in Women’s Health issues. Today, I present 3 superstar sleep […]

  966. […] are always a highlight of any sleep conference or meeting I attend – including the Congressional Briefing last May. Her confident demeanor and polished speaking skills make her a natural leader. She also […]

  967. […]  Read Part II here & Part III coming soon! /* […]

  968. Nicole Jeray on March 28, 2013 at 4:29 pm

    Great Blogs. Cant wait for the last 3 women. You are full of terrific information. Thanks for writing.
    Nicole

    • julie on March 28, 2013 at 5:59 pm

      Thank you so much, Nicole! I’ve enjoyed writing these posts. You are such an inspiration to me too!

  969. Julie Ann Funk on March 29, 2013 at 4:14 pm

    As always, so well-written, Julie! I, too, have found a wonderful man and partner in Evan, who is very understanding. Whenever one decides to disclose their narcolepsy to a potential mate, a friend, or anyone, the way you do it is the most important part. Their reaction will speak volumes to whether they deserve the right to your time and energy being spent on them. If they don’t, you should be happy to have found out so soon! <3

    • Heather M. on March 29, 2013 at 4:53 pm

      Beautiful story. I sure hope he’s the One, because he sounds amazing! Best of luck to you both.

      • julie on April 1, 2013 at 4:59 pm

        Thank you so much, Heather. I feel very lucky to have found Alex.

    • julie on March 29, 2013 at 8:15 pm

      Thank you, Julie Ann! You got it right – lady, well said. And it was so wonderful to meet you and Evan in Dallas, TX! I could tell there was a whole lot of love and support and your relationship. It’s very inspiring.

  970. Mark Patterson on March 30, 2013 at 12:40 am

    Great article Julie! Your comments apply to anyone with a chronic condition. We all live with a degree of self-doubt, wondering whether we will be accepted and loved for who we are. Adding a chronic medical condition to the mix, especially one as misunderstood as narcolepsy, only adds to the level of concern. You are truly an inspiration for others and I applaud you for your willingness to openly talk about issues which often remain unspoken. I am also very happy that you met Alex; you two make a great team.

    • julie on April 1, 2013 at 5:02 pm

      Dr. Patterson – you are so right. We all live with a degree of self-doubt and a chronic medical condition may make those fears stronger. I feel blessed to have worked through some of my own fears and insecurities to now be able to share my story openly. Thank you for your support, Julie

  971. sara gorman on March 30, 2013 at 1:44 pm

    Fabulous post, Julie!! Linking this to my website because so many can benefit from your perspective. my single lupus readers will love this! Thamks for the inspiring post!

    • julie on April 1, 2013 at 5:03 pm

      Thank you Sara for linking from your site! I’m so glad this may be useful for single lupus readers too! Coming together and sharing our journeys makes us stronger. Your friend, Julie

  972. Gail Pean on March 30, 2013 at 1:49 pm

    Fabulous blog post Julie. I think everyone can relate to it and embrace it for their own concerns in dating. It goes back to you must love yourself and respect your own needs before some else will. Thank you again for sharing.

    • Elaine Armstrong on March 31, 2013 at 6:24 am

      Hi Julie,
      I just LOVE this post, I`m going to share it in my group. I`m sure it will be appreciated by all members but especially the teens and parents of children that are concerned about their childrens futures.
      My husband(boyfriend at the time )got me to watch a tv programme with him about sleep disorders almost 18 years ago. I had been falling asleep in many inappropriate places while in his company. 10 years of attending doctors previous with no diagnoses had made me give up searching..so to speak..
      When I think back now to the love and commitment shown that night when we discovered the word Narcolepsy for the 1st time. George organised that I attend a sleep specialist and it all went from there..18 years later he is still my Rock…he has such admiration for the work I do with raising Narcolepsy Awareness. Ever since our recent suddenly sleepy Saturday narcolepsy awareness event where he met with other members with Narcolepsy, he has been even more understand and supportive, which makes this ride a hell of a lot easier !
      I can tell Julie that both you and Alex have that same relationship and I hope that in 18 years from now your relationship is as strong as George and mine, as I confident it will !!
      Thank You again Julie, in been so open with sharing your life and helping others feel so comfortable about living with narcolepsy,

      Happy Easter from Ireland,
      Your friend,
      Elaine xxx

      • julie on April 1, 2013 at 5:07 pm

        Elaine – thank you for sharing your story of support!

        I had no idea that your husband (boyfriend at the time) George helped you to find your diagnosis. This gives me chills. I’m inspired and elated to hear that you two are still together 18 years later. I’m so glad he was able to attend the Suddenly Sleepy Saturday event that you hosted in Ireland. You are amazing!

        Thank you for sharing my post with your network. 🙂

        Your friend and cheerleader,
        Julie

    • julie on April 1, 2013 at 5:04 pm

      Gail – you’ve always seen the best in me and inspired me to be self-loving. You are a role model to me in so many ways. Thank you for your support, Julie

  973. Elaine Armstrong on March 31, 2013 at 8:17 pm

    Excuse me for posting my comment in Gail Pean’s reply section !

    • julie on April 1, 2013 at 4:58 pm

      No worries, Elaine! 🙂

  974. Makky's Mom on April 1, 2013 at 2:21 am

    Funny you write about this because of all my children, my (7 yr old) narcoleptic child is the one I worry about the least in terms of future relationship/marriage. I KNOW that the guys who are just out for a fun time won’t spend much time courting her, no matter how attractive she may be because they will find her need for naps and limited energy levels too restrictive. The man she will end up with WILL most certainly be kind, loving and accepting of whatever limitations she may have. I KNOW there is a very special person out there for her.

    Julie, it sounds like your guy is your biggest fan! What a wonderful blessing! I’m very happy for you both.

    • julie on April 1, 2013 at 4:58 pm

      Thank you so much, Makky’s Mom! I agree, she will find a loving and supportive partner, which is what we all deserve. With narcolepsy, I think this helps prioritize the right things in looking for a partner.

  975. Alex Withrow on April 1, 2013 at 6:16 pm

    I’m so proud of you, sweetie! Power couple, rockin’ and rollin’ 🙂

    • julie on April 1, 2013 at 8:28 pm

      Thanks, Alex! I’m the luckiest… <3

  976. Emily on April 1, 2013 at 6:26 pm

    Great topic. The first date to whom I had to disclose my narcolepsy was the guy who was funny and charming enough to trigger my cataplexy. He ended up being funny and charming enough to marry as well. Before we were married, Sam realized he had to decide to love narcolepsy and cataplexy as much as he loved me. They’re just a part of the family, problems we deal with together. We try to look on the bright side of things and have realized that along with the hardship of shouldering a chronic sleep disorder come a lot of blessings as well. Sam couldn’t have been more supportive during our dating years and he continues to assume that role so gracefully, 7 years and 2 kids later.

    • julie on April 2, 2013 at 12:31 pm

      Hi Emily, What an inspiring story! I’m so glad to hear that you and Sam have had such a supportive relationship with narcolepsy and cataplexy in the mix. Thank you for sharing your experience here so other PWNs know that they too can find a healthy great relationship like yours. Big smiles, Julie

  977. […] – leading the way for other women to optimize their health and triumph over adversity.  Read Part I and Part II. Here’s my final three […]

  978. […] the way for other women to optimize their health and triumph over adversity.  Read Part I and Part II. Here’s my final three […]

  979. […] book […]

  980. […] I here. Part III here. […]

  981. […] II here & Part III here! […]

  982. […] pushes on my skull. Over 15 minutes or so, I lose my ability to process thoughts and communicate (described best here). Sometimes I do eventually fall asleep. Other times, I snap out of it randomly and return to […]

  983. Elizabeth on April 2, 2013 at 10:30 pm

    This is such a great post, Julie. I resonate completely with the various manifestations of daytime sleepiness that you list here. This was especially true during childhood, and because of the misconceptions about how narcolepsy should “look,” ultimately delayed my diagnosis for over three decades.

    It concerns me that so many children who struggle with narcolepsy are being mistakenly labeled with ADHD, depression, etc. Your blog and others like it are critical to changing public opinions about narcolepsy, moving us away from Hollywood stereotypes and toward more realistic descriptions from people who live with narcolepsy. Thank you for continuing this important work.

    • julie on April 3, 2013 at 1:36 am

      Elizabeth:
      It’s my greatest hope that my blog and book can help change the stereotypes of narcolepsy. I agree that sleepiness in children may be misperceieved as hyperactivity and lead to possible misdiagnosis. Thank you for your encouragement and support of my efforts.
      With gratitude,
      Julie

    • Brandon on September 19, 2015 at 5:48 am

      Elizabeth,
      My daughter at age 7 has been showing signs of narcolepsy, symptoms like figiting and not able to control her body from moving while sitting at table to do school home work. We don’t want to have her feel she is different than the rest of her peers so we keep telling her to breath and think of a peaceful place to help calm her body and clear her mind to focus on the task at hand. I wonder if she has the same narcolepsy disorder as me and not ADHD. All the great information on this page and similar sites have helped me to better understand what I can do to help reduce symptoms.

  984. Rebecca Gardner on April 3, 2013 at 12:35 am

    THANK YOU!!!!! This was a great article! It explained me to a “T” and what I deal with in my life! I tend to get irritated when people think I’m lying about having Narcolepsy because I don’t have episodes “like in the movies.”

    • julie on April 3, 2013 at 1:31 am

      Thanks for reading, Rebecca! I’m so glad this resonated with your experience too.

  985. kerry on April 3, 2013 at 2:14 am

    Your article really hits home for me. I have a 9 yr old son that has narcolepsy and pretty much everything listed on your list I experience with him. I try to be positive and help him work through these issues on a daily basis. I want him to be happy and have the best life possible…..everyday id a struggle though 🙁

    • julie on April 3, 2013 at 12:38 pm

      Hi Kerry,
      Thank you so much for reading my post. I’m sorry to hear that your young son has narcolepsy and that every day is a struggle now. Your patience and support of his experience is invaluable for helping him to succeed with narcolepsy. I do believe narcolepsy can become more manageable for some individuals with age and time. I know for me, I continue to grow and become more self-aware each day.
      Thanks again,
      Julie

  986. Lacy on April 3, 2013 at 3:03 am

    This really hit home for me because it also described me to a “T” but it had never occurred to me that the symptoms were from my Narcolepsy, nor was I ever told so by my doctors. I knew obviously just plain old grumpiness and irritability were signs but the others I did not know about and often wondered what else was wrong with me that could be causing these symptoms. Thanks so much for clearing that up for me 🙂 Theses symptoms are especially hard to deal with when dealing with a 2 year old & 3 year old but I do the best I can. I always knew having kids was going to be a major challenge for me but I didn’t know I was going to end up with two extremely hyper-active kids that NEVER SLEEP!

    • julie on April 3, 2013 at 12:34 pm

      Hi Lacy,
      I’m so glad this information was helpful for you too! When the doctor presented these – so many lightbulbs went off in my head. You are Wonder Woman for taking on narcolepsy and raising children. I’m so impressed and inspired! I hope their sleep patterns settle down so you can get some much deserved rest too!
      Big smiles and many thanks, Julie

  987. Kim on April 3, 2013 at 8:04 am

    And a wonderful book. I read it in 4 days because I could not put it down. I don’t have Narcolepsy, but have the chronic illness of Vasculitis. I could relate so much to the the waiting to be dx, to the problems of symptoms, understanding by family, friends and even outsiders, to the horrible medicines and side effects and even the personal struggle. You have captured it all so beautifully. Also the battle to overcome these issues to run a marathon is so inspiring. Thank you for writing this book.

    • julie on April 3, 2013 at 12:31 pm

      Hi Kim – thank you SO much for reading my book. I’m so sorry to hear you have Vasculitis but I’m glad you could relate to so much in my book. By meeting people with other conditions, I’ve learned that we have some many similar battles. It’s great to know we aren’t alone. I’m beyond honored that you enjoyed my book. With gratitude, Julie

  988. Mary Jo on April 3, 2013 at 8:23 am

    Thank you for your Book. I live with the EXACT same symptoms and experiences!
    I first lost my legs and so on and so forth. It is a blessing to know we are not alone. Thank You! Thank you!

    Mary Jo Zagozen

    • julie on April 3, 2013 at 12:30 pm

      Hi Mary Jo, Thank you SO much for reading my book. I’m so sorry to hear that you have had the same exact symptoms and experiences but it does feel nice to know we aren’t alone in these struggles. Sending wakefulness and big smiles your way, Julie

  989. Claire Metters on April 3, 2013 at 11:13 am

    Oh man…..so true. I have insane bouts of aggressiveness and hyperactivity. Kids know to give mum a wide berth after a nap, until she’s had a brew! Pulling myself out of a strategic nap is like a psychological battle. Every part of me wants to stay in my cosy, warm slumber, so its no great surprise that I get a bit grouchy. It’s the equivalent of not being a morning person, just repeated! As for hyperactivity…well any surprise burst of energy is gonna get utilised. In fact, I’ve a list for such moments 🙂

    • julie on April 3, 2013 at 12:28 pm

      Hi Claire – I’m so glad this rings true to your experience too! I’ve actually written a follow-up post about grumpiness coming out of naps – because I feel this is another important issue to discuss. SO glad to hear you experience this too. A list for surprise moments of energy – what a great idea! Thanks for reading, Julie

  990. richmeister on April 3, 2013 at 1:04 pm

    Im off for my first MLST next week and I cant wait. Im sick of living in a cloud of fatigue where I just cant function. Sick of being labelled lazy or being asked if I had a late one last night. Im almost convinced I have Narcolepsy. Whatever it, it sucks!
    Love the blog.
    Rich, UK.

    • julie on April 3, 2013 at 3:30 pm

      Hi Rich – I’m sorry to hear you are experiencing fatigue and can’t function. I’m so glad to hear you are getting your first MLST next week. Finding out the cause and what solutions are available will be very helpful. You deserve to feel wakefulness and I hope this is the beginning of the change. Best of luck, Julie

  991. Kathy Herbst on April 3, 2013 at 3:00 pm

    Hey Julie,
    Again, I want to say what a wonderful job you are doing of getting the word out about Narcolepsy. I think what you said today should be included in a packet of information to be given to disability officers at schools everywhere, at all levels! I am so tired of hearing that giving a student with Narcolepsy extra time for assignments is causing an unfair advantage that the other students don’t have!! Maybe they should try getting all of their personal care, eating, going to class and HOMEWORK done in the same amount of time a PWN has in a day which is probably about 4-6 hours less ( due to nap-times and/or periods of inattentiveness) than the other students!!! You GO Girl!!

    • julie on April 3, 2013 at 3:29 pm

      Thank you, Kathy. It’s my greatest hope to change these misconceptions of narcolepsy and sleepiness. I’m sorry to hear that some disability officers at schools are not understanding the challenges of narcolepsy. It’s heart-breaking. Ever onward – keep fighting! -Julie

  992. Teresa on April 3, 2013 at 8:28 pm

    wow… so poetic! and worded perfectly!
    i’ve always wished i could express myself and what this feels like so well so that others understand!

    • julie on April 4, 2013 at 3:17 pm

      Teresa – thank you for your comment. I love trying to find ways to express our strange experiences. Thanks for reading! -Julie

  993. Liz on April 3, 2013 at 10:50 pm

    Julie,
    My daughter was just diagnosed with narcolepsy–she is 28, and is having a horrible time with it. Thank you so much for your website; it has been the only positive, encouraging bit of information we have seen so far. Please continue to pass on information and spread hope.
    Liz

    • julie on April 4, 2013 at 3:16 pm

      Liz – I’m so sorry to hear your daughter was recenlty diagnosed and is struggling with it. Hang in there – I promise it gets more manageable with time. Thankk you for supporting her experience. -Julie

  994. Chelsea on April 4, 2013 at 2:28 pm

    Julie,
    This site is a godsend, every article you write resonates within me, and this particular article could have been written ABOUT me specifically!
    I really have a hard time controlling my irritability, agressiveness and the world is against me attitude I get when I’ve pushed myself too far into ESD in an attempt to get something done. So many times I have tried to explain to the people unfortunate enough to be stuck near me when it hits, but my inability to describe it accurately just sounds like an attempt to make a poor excuse.
    No doubt this will be a struggle. However knowing these are actual signs of ESD is helpful. Perhaps if I explain this in advanc when I’m my cheerful self it will make a larger impact and will lead to a more tolerant environment overall. Thank you!

    • julie on April 4, 2013 at 3:16 pm

      Hi Chelsea – I’m so glad this rings true for you too! I agree, acknowledgment is helpful and hopefully will help us not to take this out on others and recognize EDS right away. Everyone has weaknesses and bad moods. Understanding ours is a great head-start! With gratitude and big smiles, Julie

  995. MAURO on April 4, 2013 at 3:02 pm

    CIAO A TUTTI…MI PIACEREBBE POTER LEGGERE TUTTO L’ARTICOLO E TUTTI I COMMENTI IN ITALIANO…SONO UN ITALIANO NARCOLETTICO E HO CAPITO SOLO IN PARTE QUELLO DA VOI SCRITTO E COMMENTATO…

    • julie on April 4, 2013 at 3:12 pm

      Thank you for visiting my site, Mauro!

  996. Elara on April 5, 2013 at 6:15 am

    Awwww, this really makes me want to cry… It’s so true, and it’s so hard, narcolepsy has been a big reason my last three relationships have failed… they are always aware before we start dating… and then usually its what breaks us apart… 🙁

    • julie on April 5, 2013 at 12:20 pm

      Hi Elara, I’m sorry to hear you’ve had trouble with dating and narcolepsy. Hang in there! You are overcoming adversity daily and you are worthy of being loved and supported. With gratitude, Julie

  997. Chris Brown on April 5, 2013 at 2:42 pm

    Thank you again Julie, for everything you do for spreading the word about us. All boxes check for me as well, it’s just harder to recognize in yourself. I had just assumed that everyone I saw after waking up was being intentionally buttheadish. Just a quick question,where does AB (Automatic Behavior) fit in?

    • julie on April 5, 2013 at 6:39 pm

      Hi Chris, Thank you for your support and comment.

      To the best of my understanding, “automatic behavior” is when we are getting very sleepy but continuing with physical activity (like typing, driving, performing tasks) even though our mental consciousness is fizzling fast. Often automatic behavior happens right before fully falling asleep and upon waking, the person doesn’t remember having done that task or where they left off. Automatic behavior is definitely a symptom of narcolepsy – perhaps addressed somewhat here under “memory deficits.”

      Hope that helps! Julie

      • Adrienn on April 21, 2015 at 5:05 am

        Ohmygod. I do this all the time. I drive home and have no clue how i got home. I do my work and the next day have no clue where I left off and what’s next. I read something and can’t remember what I just read. I can’t believe this is narcolepsy. I can check off all that’s listed. I thought i was the only weirdo in the wold who can fall asleep during the day even while the cashier is scanning my items, but when I’m finally ready for bed, i cannot fall asleep. I was diagnosed with Adhd and been taking Ritalin for 6 years now. Can’t sleep at night time. Have an aggressive, irritated attitude a lot of times for no reason damn I hate that! I get irritated by almost everything and I never know why. It really affects my relationships especially because I go off on people like a mad person who should be locked up. When I get enough sleep I am a totally different person. Sometimes I skip a night so the next night I will be able to fall asleep like “normal” people and wake up in the morning instead of 9:30 am. People are scared of me because I am so angry when I wake up. SO WHAT’S THE SOLUTION??? Is there a cure? I’m 34. I’m typing this with a sleeping pill in me and 5htp 100mg and it’s 1am. And I was fatigue pretty much all day

  998. […] Other risks I’ve taken despite narcolepsy:Flygirl Takes On Flying Trapeze Despite CataplexyCrow Pose: To Rish Falling On Your NoseTaking Risks & Discovering NiaThe View from Dreamworld  […]

  999. […] risks I’ve taken despite narcolepsy:Flygirl Takes On Flying Trapeze Despite CataplexyCrow Pose: To Rish Falling On Your NoseTaking Risks & Discovering NiaThe View from […]

  1000. Alex Withrow on April 8, 2013 at 8:44 pm

    Thanks for this post, sweetie. You really did love that hammock.

    Best trip ever.

    • julie on April 8, 2013 at 9:02 pm

      Loved the hammock. Loved the festival. Loved Miami. Spring break forever!

  1001. Garey Wheatley on April 10, 2013 at 2:30 pm

    I guess I am really asleep. I can not even find out how I am supposed to react. I tried space bar, return key, left/right arrows??

  1002. Garey Wheatley on April 10, 2013 at 2:38 pm

    OK, figured it out.

    • Nellie on April 10, 2013 at 5:04 pm

      Is it the spacebar? O.O

      • julie on April 11, 2013 at 3:26 pm

        Yes, the spacebar. Thanks, Nellie!

    • julie on April 11, 2013 at 3:28 pm

      Great! I’m so glad.

  1003. Elaine Armstrong on April 10, 2013 at 3:02 pm

    This is really good ..my boys kept asking me questions about their homework during this 5min test , so it would be the same distraction I would have if driving them somewhere.
    Even though I didn`t feel so tired during it, it did show up that I may start to feel tired at this time of the afternoon. !!

    • julie on April 11, 2013 at 3:27 pm

      Too funny about your boys distracting you. How true! Hope you didn’t hit anything. I did. 😉

  1004. Becky Bennett on April 10, 2013 at 6:28 pm

    My avg reaction time was 0.32 with 0 accidents! Yay! :O)

    • julie on April 11, 2013 at 3:26 pm

      You must be wide awake, Becky! Good job. 🙂

  1005. The Dreamer on April 11, 2013 at 5:24 pm

    My avg reaction time was 0.30…which makes me safe? But, I had one crash.

    It was long and boring enough…that I could feel the threat of microsleeps creeping in….

    What’s better is that I barely slept 2 hours after my second dose this morning….so I’m still in a bit of a fog.

    • julie on April 12, 2013 at 2:19 pm

      Hi Dreamer: Thanks for checking this out! I agree, long and boring enough to make it realistic. 😉 Sending wakefulness and smiles your way, Julie

  1006. […] the patient perspective in evaluating any upcoming narcolepsy treatments for FDA approval. As hypocretin agonists become more of a reality for future narcolepsy treatment, this is an exciting opportunity for patients to aid FDA in understanding what matters most to […]

  1007. […] Narcolepsy in new patient-focused initiative (October 2012)FDA Initiative Materials (October 2012)A Note of Thanks & FDA Update  (November 2012)Julie Flygare Represents Narcolepsy at FDA (March 2013) […]

  1008. […] also:Representing People with Narcolepsy at the FDA (October 2012)Join Me: Urge FDA to include Narcolepsy in new patient-focused initiative (October […]

  1009. […] also:Representing People with Narcolepsy at the FDA (October 2012)Join Me: Urge FDA to include Narcolepsy in new patient-focused initiative (October 2012)FDA Initiative Materials (October 2012)A Note of Thanks & FDA […]

  1010. […] 2012)Join Me: Urge FDA to include Narcolepsy in new patient-focused initiative (October 2012)FDA Initiative Materials (October 2012)A Note of Thanks & FDA Update  (November 2012)Julie Flygare Represents […]

  1011. […] 2012)FDA Initiative Materials (October 2012)A Note of Thanks & FDA Update  (November 2012)Julie Flygare Represents Narcolepsy at FDA (March 2013) […]

  1012. Sharron on April 12, 2013 at 3:53 pm

    Thank you for all of your hard work on our behalf, Julie.

    • julie on April 12, 2013 at 4:08 pm

      You’re welcome, Sharron. Thank you for supporting my efforts.

  1013. Julie Ann Funk on April 12, 2013 at 3:59 pm

    So incredible!! I know I got my comments in there, and a number of my friends did, as well. You truly are amazing with the work you do to bring narcolepsy to the forefront, and I can’t thank you enough for it! <3

    • julie on April 12, 2013 at 4:09 pm

      Thank you, Julie Ann for submitting comments and rallying your friends to submit comments too. We did it!! Jumping for joy today.

  1014. Elaine Garza on April 12, 2013 at 4:16 pm

    This is incredible news! Great job, Julie! I provided comments online and also sent the link to friends and family to contribute! Way to go!

    • julie on April 12, 2013 at 5:59 pm

      Thank you so much, Elaine. Your efforts made an important impact. Every letter counted towards drawing FDA’s attention to our condition.

  1015. Evan Callicoat on April 12, 2013 at 4:27 pm

    Awesome!! This is fantastic news. So glad to have contributed in a small way to this accomplishment.

    • julie on April 12, 2013 at 5:58 pm

      Thank you so much for supporting this effort, Evan! We did it!!

  1016. Anna aka Sleepymoon on April 12, 2013 at 5:59 pm

    Julie, you ROCK, and this is AWESOME NEWS!!! So exciting!! Way to make a difference. Hopefully we will all sleep better as more of society starts to recognize and respect our need for sleep instead of calling us lazy and crazy. Doctors included!!

    • julie on April 12, 2013 at 6:53 pm

      Thank you, Anna! I am hopeful there’s a bright future for narcolepsy, with people respecting our disorder and better treatments to improve quality of life. With gratitude and smiles, Julie

  1017. elizabeth on April 12, 2013 at 7:14 pm

    Julie!!! This is awesome! Thank you for spreading the word and enabling us to participate in the effort. And thank you for your advocacy; I am so grateful that you are out there representing us!

    • julie on April 14, 2013 at 5:16 pm

      Thank you, Elizabeth. It’s an honor and joy to represent the community. Each and every person that submitted a comment to FDA made this possible. 🙂

  1018. Jennifer Miller on April 12, 2013 at 7:37 pm

    I am so glad that you are able to do these things. I hope people will listen and respond. Where I live they hand you the results and let you know you can now get medication and that is all. No follow up, no additional tests, just cope best you can. I am a 3rd generation sufferer, which seems to not be the norm. There are four diagnosed cases that I know of, my grandmother, (out of her four kids) my mother and my sister and myself (my mothers only kids). I have 3 girls my oldest behaves like my sister when she was young and my middle child reminds me of myself, this causes concern that they may have it as well but I have been told “It dose not present until mid 20’s. ” This I believe to be hog wash! I had suspected and found more reason to believe since I have found a group to commiserate with which led to my learning of you and reading what you have wrote, that I have been fighting this from at least the 5th grade. Ignorance is not bliss whether the doctor or the sufferer. So I want to thank you for all that you do and may productive sleep bless your rest. Jennifer

    • julie on April 14, 2013 at 5:14 pm

      Hi Jennifer, Thank you for your comment. I’m sorry to hear you are a 3rd generation person with narcolepsy. I agree that it’s a myth that narcolepsy doesn’t present until mid-20s. Top specialists recognize that narcolepsy development in children is increasingly common, but we’re still getting the word out to all doctors. I believe narcolepsy will gain more accurate attention in the future, at least that’s my goal! Sending wakefulness and many thanks your way, Julie

  1019. JudePNP on April 12, 2013 at 7:41 pm

    Fantastic! I was thrilled to see this news. What a wonderful improvement in the quality of life and opportunities this will make for my 4 daughters, myself and my grandson….all narcoleptic. I’ll help in any way I can.

    • julie on April 14, 2013 at 5:18 pm

      Thank you for your support, Jude! I’m so sorry to hear so many members of your family are affected. Please sign up for my mailing list for future participation opportunities.

  1020. Stephanie Suttle on April 12, 2013 at 10:38 pm

    Thanks Julie! You are always an inspiration and a ray of hope to those of us with N. Thanks for always telling it the way it is. I think you make it easier for the rest of us to do the same. And to feel proud of our accomplishments and less saddened by our struggles.

    • julie on April 14, 2013 at 5:09 pm

      Thank you so much for your on-going support, Stephanie. I continue to gain courage to “tell it how it is” from the supportive feedback of friends like you. 🙂

  1021. Susan on April 12, 2013 at 11:21 pm

    This is great news! Thank you for testifying and leading the effort to get people to submit comments. I submitted my comments and tried to spread the word. Your advocacy work has led to some amazing accomplishments.

    • julie on April 14, 2013 at 5:09 pm

      Thank you, Susan for submitting comments and spreading the word! I’m so proud of our community coming together to support our common goal of a brighter future.

  1022. TheDreamer on April 12, 2013 at 11:57 pm

    Yes! I know my comment is on there…. wonder what it’ll look like when it appears?

    • julie on April 14, 2013 at 5:08 pm

      Thank you so much for posting a comment for the FDA initiative, Dreamer! Every comment counted toward our selection.

  1023. Nick Lynch on April 13, 2013 at 12:20 am

    Hi Julie, love this post. I mentioned something similar in one of my first posts on my blog on blogger! I’m so glad to see that I’m not the only one who felt the need to explain this haha. I love what you’re doing for the narcolepsy community, I’m actually trying to do the same thing. So you are now my role model in my cause!

    I hope to get better acquainted with you, Julie. I would like to collaborate with you on some ideas, maybe even pick your brain a little. Just a little 🙂

    Keep up the great work Julie, you’re truly inspirational!

    • julie on April 14, 2013 at 5:08 pm

      Hi Nick, Thanks for your comment. I’m so glad you enjoy my blog and have been blogging too! Can’t wait to check out your site. Big smiles, Julie

  1024. Jennifer Beetz on April 13, 2013 at 12:22 am

    I have a couple (two) friends with narcolepsy. I’m so very, very happy for them and I know a great deal of effort went into making this initiative happen- effort from those who suffer from narcolepsy and also their families and friends…

    • julie on April 14, 2013 at 5:07 pm

      Thank you, Jennifer for supporting your friends’ experience with narcolepsy and our efforts to build a brighter future. We will keep fighting together as a community for change!

  1025. Mike on April 13, 2013 at 12:36 am

    Congrats on all your hard work paying off Julie! I look forward to the public hearings in the fall. I will be keeping an eye out for the announcements and hope to be able to attend.

    • julie on April 14, 2013 at 5:06 pm

      Thank you so much, Mike! I will keep folks posted via my blog and mailing list.

  1026. Gail Monte on April 13, 2013 at 12:39 am

    Such amazing news!! Thanks for everything!!

    • julie on April 14, 2013 at 5:06 pm

      You’re so welcome, Gail! Great news, indeed.

  1027. Liz on April 13, 2013 at 12:56 am

    Julie,
    This disease is new to my daughter and me, so we were not involved when you all were fighting for us. Thank you so much for everything you have done!

    Liz

    • julie on April 14, 2013 at 5:05 pm

      Liz, I’m so sorry to hear your daughter was recently diagnosed. Thank you for supporting my efforts now. -Julie

  1028. Julie Brown on April 13, 2013 at 1:42 am

    Julie,

    Your dad was my cousin. This is such sad and stunning news. I was Googling info on his brother, Billy, and saw that Tom had died. I’m so sorry.

    You look a lot like his mother. Did anyone ever tell you that? I have old photos somewhere of Doris and Bill, Tom, Nancy, and Billy. Please feel free to email me if you want to.

    Julie Brown

    • julie on April 14, 2013 at 5:05 pm

      Hi Julie,
      Thanks for reaching out. So excited to meet you.
      Big hugs,
      Julie F.

  1029. Susyana suwadie on April 13, 2013 at 3:03 am

    Dear Julie,

    Thanks God about the good news ….! I do hope there will be a great way to develop more about narcolepsy treatment and medication…..
    I really hope someday everybodey include my son will be cured from narcolepsy…

    Keep going to fight with this and I fully support you ….
    Big thanks

    • julie on April 14, 2013 at 5:04 pm

      Thank you so much for your support, Susyana! I will keep fighting. 😉

  1030. Julie on April 13, 2013 at 3:09 am

    Wasn’t very diagnostic for me. I am sleepy and have a migraine and yet I scored as safe with a reaction time of 29 seconds. I purposely did it with a migraine to see how much that would impair my functioning. I feel like I am thinking slowly but apparently it didn’t affect my reaction time.

    • julie on April 14, 2013 at 5:04 pm

      Thanks for trying it, Julie. Hope you’re feeling better!

  1031. A Big Win for Narcolepsy Research on April 13, 2013 at 6:16 am

    […] more information, I will send you to Julie Flygare’s page, because she has already interpreted this information and has made it make sense. Thanks again, […]

  1032. Stacy on April 13, 2013 at 5:04 pm

    Thank you, thank you, thank you for being our “leader”, our activist! Without you Julie, none of this would be possible!! I’m forever grateful in hopes that one day soon all of us can be freed of this horrible disease!

    • julie on April 14, 2013 at 5:02 pm

      Thank you so much, Stacy! I knew in my heart I had to take this project on, it was the right thing to do, and I’m so glad I took the time and effort. The community supported me and I couldn’t have done it without each and every person that sent in a comment! Big smiles and many thanks, Julie

  1033. Mary LaFond on April 13, 2013 at 7:12 pm

    Thank you, Julie, for all that you are doing. You and I were in touch during the
    submission of letters for the FDA. I love how, in so many different ways, you
    are shedding light on the multitude of questions, about Narcolepsy, that no
    one touches on. When my daughter was young, I didn’t understand her moodiness because she showed no signs of Narcolepsy until 11th grade. It is
    horrible for a child to not have any control over wakefulness and feel that he/she
    is the “black sheep” (in addition) for his/her moodiness. I was not understanding
    and that really hurt her and her self-esteem.
    One SUPER VALUABLE item that REALLY needs more focus is the connection
    between the lack of hypocretin, the immune system and gluten intolerance.
    My daughter, who is 30, has had to find this out the hard way…….but it is a
    real medical issue connected to Narcolepsy. She has had to cut out all dairy,
    wheat, gluten, beans and corn and it has made a large difference.
    God bless Julie for giving of herself so that all narcoleptics can, hopefully,
    have a chance to live a normal life.

    • julie on April 14, 2013 at 5:01 pm

      Thank you so much, Mary for your on-going support of my efforts and your daughter’s experience. I’m so glad to hear your daughter is doing well with dietary changes to improve her symptoms.

  1034. SMcLeod on April 13, 2013 at 9:53 pm

    Awesome little program… Reaction time of 0.43 sec with 7 accidents. Sadly unsurprising given that I have a real track record of 4 major accidents and lots of close calls (prior to diagnosis, now I don’t drive and am far happier for it!). I feel like it would be an eye opener if something like this were a mandatory part of getting a driver’s licence – one round with no access to a cellphone, and once while using it to text/talk/read email/etc.

    • julie on April 14, 2013 at 5:00 pm

      Thank you for your comment! I agree, it’s a great tool for examining sleepiness.

  1035. wayne on April 15, 2013 at 6:11 pm

    Hi,
    I’m wayne from singapore and I’d like to thank you for your blog post on this wonderful news of US govt funding orexin receptor agonist drug development! I’m narcoleptic too… Horrible that anyone has to suffer like we have. I look forward to a “cure”! May we all have normal wakefulness within this decade!

  1036. Angie Meehan on April 16, 2013 at 3:20 pm

    Bless everyone’s heart. Thanks for sharing your favorite photos of Boston 🙂

    • julie on April 16, 2013 at 3:24 pm

      Thank you, Angie.

  1037. Bernd Kittendorf on April 17, 2013 at 1:57 am

    Hi Julie,

    when I heard of the attack at the Boston Marathon, I thought of you and your website, because you were there runnig some years ago. I read that when I found Your website in search of informations on narcolepsy (I have narcolepsy since 2008).

    To find sensible words in the face of such unreasonable acts as the attack is hardly possible. To show some nice pictures of Bosten was a good idea.

    On this occasion I would like to tell you and your readers: the way you describe aspects of narcolepsy in your words – that is worth reading.

    Friendly greetings from Germany
    Bernd

    • julie on April 17, 2013 at 6:50 pm

      Hi Bernd: Thank you so much for thinking of me when you heard the news of the Boston Marathon. Thank you also for your kind words about my writing and website! Sending wakefulness and big smiles your way in Germany, Julie

  1038. Melissa on April 17, 2013 at 3:01 pm

    Beautiful pictures of a beautiful city. Thanks for sharing, Julie.

    • julie on April 17, 2013 at 6:50 pm

      Thank you, Melissa!

  1039. Alex Withrow on April 17, 2013 at 9:47 pm

    I love your message here. It’s hopeful but also gives constructive tips on what people can do to better themselves in that particular situation.

    Great job, Jules!

    • julie on April 18, 2013 at 1:57 pm

      Thank you so much, Alex! Your amazing video skills makes this all possible. Forever grateful, Julie

  1040. patrick on April 18, 2013 at 1:29 am

    Hi Julie, I recently read your book. Very interesting read! I get the impression that no two cases of Narcolepsy are equal, but I thought I’d seek your opinion on certain things. I apologize if answers can be found elsewhere in your blog.

    Would it make sense for a Narcoleptic to become somewhat of an expert at “sleeping with your eyes open” rather than finding yourself taking naps due to daytime sleepiness? This may include actually getting work done at a computer, or sleep walking to/from/at work (with the occasional bump into a wall). I suppose that could be within the realm of “automatic behavior”.

    Lastly, would Narcolepsy even allow you to deprive yourself of sleep (<2hours worth) after a day of exhaustion and yet somehow feel significantly better the following day (seemingly energized by a "second wind" which is apparently much stronger than the "first wind", yet not backed up by a caffeine increase)? Then follow this with a "regular" night of sleep, experience sleepiness once again, and maintain this cycle for days/weeks at a time before reaching some kind of limit? I did not get that impression from your book, although in most cases where you deprived yourself of sleep I believe you were out drinking. 🙂

    Great work with the book and the blog Julie!

    • julie on April 18, 2013 at 1:56 pm

      Hi Patrick,
      Thank you for reading my book and checking out my blog. Sleepiness comes in many forms. “Sleeping with your eyes open” sounds like automatic behavior. Sleep is such a fascinating complicated thing, especially for people with narcolepsy. Circadian rhythm timing issues may also contribute to the mis-timing of sleep and wakefulness. This is an area researchers are still learning about.
      Sending wakefulness and many thanks your way,
      Julie

      • Patrick on April 23, 2013 at 3:39 am

        Hi Julie,
        Sleep is quite fascinating. It’s a shame most people (like myself) pay no attention to it until our entire body seems to be breaking down. Equally interesting (and somewhat unfortunate), is how many of the symptoms resemble those of various forms of migraine for example.
        Thank you for the wakefulness, right back at you.
        Cheers,
        Patrick

  1041. cindy on April 18, 2013 at 1:18 pm

    I thought of you too, Julie, when I heard about the tragedy. I thought there might be a chance that you were there! I am relieved that you are safe, and my heart is broken for the people of Boston!

    • julie on April 18, 2013 at 1:58 pm

      Thank you, Cindy, for thinking of me. I am safe but very sad for Boston’s tragedy. Big hugs, Julie

  1042. Doug on April 18, 2013 at 2:27 pm

    Great tips and very timely. I just applied to nursing school

    • julie on April 18, 2013 at 4:31 pm

      Thanks for watching, Doug. Best of luck with nursing school!

  1043. Sylvia on April 19, 2013 at 4:58 am

    This was the best description to the sleepiness that I feel every day that I have ever read. It actually made me cry, I think mostly with relief, that someone else understood. My family really doesn’t believe the whole thing and I have to listen to their comments and snide remarks often. I have 2 small children and my mother and grandmother help us with them during the day and I cannot find even ground with them. If I wake up with the kids, I am dozing off and falling asleep on the couch by 10-11am and sleep until 2-4pm. If my mom gets the kids out of bed and I sleep until 11am-noon, then I can stay awake the rest of the day, but they then complain about me losing time with the kids (which I was doing anyways falling asleep for 4+ hours). When one is watching a tv show and the other playing a game on their leap pad, I will pull out my phone to keep the sleepiness at bay, which then gets the “you’re an awful parent because you’re on your phone all this time” looks and, they don’t say it to my face but will post meme’s about bad parents on their facebook so I see it later. I’m just trying to do what I can to stay awake so that when they’re done watching their show, I will still be there and not in dreamland. I can’t make them understand and it breaks my heart knowing that they think the way they do, and also that I am in a situation that it even looks like I’m being “neglectful”. I’ve never been able to do the 15min. – 1 hour nap, once I’m out, I’m out and I can’t fix it. Thank you again so much for this description, maybe someday I will have my mom read this, but I doubt it will help her understand.

    • julie on April 21, 2013 at 2:15 pm

      Hi Sylvia, I’m so glad my essay resonted with you. Unfortuantely, many people with narcolepsy and other sleep disorders struggle against misunderstanding from loved ones. I’m so sorry to hear this has been your experience. You are overcoming so much adversity daily to be a mother of two children while battling symptoms. I’m cheering for you! Please consider sharing my essays, videos and book with your family – many PWNs have found this helpful for fostering understanding. Sending wakefulness and smiles your way, Julie

  1044. Sylvia on April 19, 2013 at 5:08 am

    This was great, again not being alone is such a good feeling. I don’t usually mistake dreams as real, what usually happens with me is I know what’s going on, I can hear the tv and know exactly what they’re saying (which may turn into a dream if I don’t wake up when it happens). I will hear and feel whoever is trying to wake me up. I know they’re there, I know I should be awake, I want to answer them, move, anything to get them to stop trying to wake me, and I can’t do it. It will take several minutes if at all until I can finally respond to them, and of course, when I tell them yeah I heard that, I knew what was going on, they just get mad because I “didn’t want to get up”, or “ignored” them. I just found your site tonight and started reading stories, I still haven’t stopped crying, thank you.

    • julie on April 21, 2013 at 2:08 pm

      Sylvia, Thanks for checking out my site! I’m so sorry you expereince prolonged sleep paralysis upon waking too. It’s so uncomfortable and you deserve support from those around you upon waking from this challenging experience. Please consider sharing my blog and book with your supporters so they may understand better. Many thanks, Julie

  1045. Makky's Mom on April 21, 2013 at 4:04 am

    Great tips for young adults, but also for little ones. My daughter has fabulous accommodations in school, including a fulltime educational assistant who shadows her all day for safety from cataplexy falls, to provide stimulation during less than exciting activities and to stay with her when she naps. She has a dedicated room at school for her 1 hr scheduled nap, and her assignment due dates are adjusted based on her medical needs. I also get a daily report on her general wellbeing and the successes/challenges she’s faced at the end of each schoolday. She’s only 7 and she needs these accommodations in order to attend school. Thankfully, we did not have to fight for these accommodations – the school board approved them the day after we requested them! The principal, the teacher and her E.A. have all been supportive and helpful over these last 2 years! I hope that she has this much support through out all her years of schooling. It’s SO important to know that people understand and care and take it seriously.

    • julie on April 21, 2013 at 2:04 pm

      Makky’s Mom – Thank you so much for sharing your experience getting accommodations for your young daughter at school. This is so helpful for others to hear different possibilities for their child. Wishing Makky much success in school! Many thanks, Julie

  1046. Reid Schmit on April 21, 2013 at 7:20 pm

    I have narcolepsy as well. This blog is amazing and very helpful in my pursuit to control narcolepsy. Everything this blog is and stands for is very inspirational. In this Part I post you say, “I’ve written a concise essay on this topic that I’d be happy to share with you if you email me.” Well needless to say i would very much appreciate your essay. I am always trying to gain knowledge on the subject of narcolepsy. I am a runner too and similar to you I have been diagnosed with, as my friends and i call it, the Narc. Thank you for all that you are doing.

    • julie on April 22, 2013 at 1:04 pm

      Hi Reid,
      I’m so sorry to hear you’ve been diagnosed with narcolepsy too – but I’m so glad you found my site. Good for you for always looking to learn more about living well with narcolepsy. Keep running!
      Cheers,
      Julie

  1047. Krissy on April 22, 2013 at 4:28 pm

    So beautiful Julie!

    • julie on April 22, 2013 at 7:16 pm

      Thank you, Krissy! I enjoyed writing this so much.

  1048. Deborah on April 23, 2013 at 2:21 pm

    It is always good to gather those around you that you can count on. Never fear it will not be one way help, you will help each other just through different “hard” days!

  1049. Gail on April 23, 2013 at 2:54 pm

    Julie, thank you so much for sharing! I am so glad that I found your blog. This post is especially meaningful for me. I agree – it is difficult to accept help but we ALL need help sometimes!!

    • julie on April 23, 2013 at 7:09 pm

      Gail – I’m so glad you found my blog and that this post is meaningful to you too! Sending big smiles and many thanks, Julie

  1050. Gail Pean on April 23, 2013 at 2:56 pm

    I love the image and quote! It gives me the chills.

    • julie on April 23, 2013 at 7:10 pm

      Thank you, Gail Pean for being on my personal Board of Directors! You inspire me so much.

  1051. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:29 pm

    […] Watch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  1052. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:29 pm

    […] #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: […]

  1053. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:29 pm

    […] #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: […]

  1054. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:30 pm

    […] Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  1055. School Accommodations with Narcolepsy Video on April 23, 2013 at 4:31 pm

    […] Watch Video #14: Tips for Students with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  1056. School Accommodations with Narcolepsy Video on April 23, 2013 at 4:31 pm

    […] #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: […]

  1057. School Accommodations with Narcolepsy Video on April 23, 2013 at 4:32 pm

    […] #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: […]

  1058. School Accommodations with Narcolepsy Video on April 23, 2013 at 4:32 pm

    […] Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  1059. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:45 pm

    […] Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and […]

  1060. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:45 pm

    […] Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about […]

  1061. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:45 pm

    […] about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  1062. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:45 pm

    […] and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle […]

  1063. Tips for Students with Narcolepsy Video on April 23, 2013 at 4:46 pm

    […] Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  1064. cindy on April 26, 2013 at 2:47 pm

    Thanks for the encouragement I needed to get back to the gym Julie!

    • julie on April 26, 2013 at 3:25 pm

      Thanks, Cindy. I’m so glad to help motivate!

  1065. Pete on April 26, 2013 at 5:00 pm

    That quote sums up how awesome yoga is perfectly!!

    • julie on April 27, 2013 at 8:12 pm

      Thanks, Pete! I agree. 🙂

  1066. chrys on April 26, 2013 at 6:28 pm

    Thank you so much!! My husband and I are going through this exact thing with our now eight year old son. He was diagnosed a year ago and we have since changed insurance companies and he has been denied the use of Modafinil. We are going to continue to fight!

    • julie on April 26, 2013 at 6:46 pm

      I’m so glad this post is helpful to you. Keep fighting!

  1067. Susan on April 27, 2013 at 12:27 am

    I was given your name by a friend of my daughter who has narcolepsy. I bought yur book & am reading it. I started a blog years ago, but too tired most nights to write in it – A Narcoleptic Tale. I started it for my kids & grandchildren. I was diagnosed when I was in Nursing school at 20 years old. I am now 62 & drs are just as ignorant as they were in the 70’s. I shouldn’t say drs I mean the whole medical community. Because of what the ritalin has done to my heart I need to go on a newer drug. Insurance won’t approve it because I never had a sleep study done. Had one study – they are telling me I have sleep apnea. I’ve had cataplexy for 40 yearss! And as a matter of clarification, the illness doesn’t seem to progress, unfortunately as we get older, we get more tired! I thought you might find this interesting. When I was young – maybe 5 I has scarlet fever. Then at about 8 or 9 I hit my head while ice skating had a concussion. Next at 12 I got the Hong Kong flu (the name of the strain in the 60’s) Finally in college, celebrating my birthday & drinking too much I had a severe head injury, shortly after I started having symptoms. My family didn’t understand at all. Before my mom died in 2004 she apologized for not understanding what I was going through. I told her there was nothing she could do, I had to learn my way on my own. I am the only 1 of 6 with narcolepsy but I worry about my hhildren & grandchildren. My older sister joined the National Geographic genome project. She sent in a DNA swab & they sent her a mapping of our family’s mitochondrial Eve. She sent in another swab & they analyzed it. My dad has heart disease & diabetes on his side of the family. The only genetic illness they found was Narcolepsy!!That was exciting!
    I am here to tell you I appreciate what you are doing so my descendents don’t have to go through what I went through & to volunteer if you need help!

    • julie on April 27, 2013 at 8:14 pm

      Susan:

      Thank you so much for your kind comment. I’m so sorry to hear you’ve had narcolepsy for so many years and dealt with so much misunderstanding. It’s my greatest hope to change public perceptions and raise awareness. We are stronger together – thank you for your support.

      Sending wakefulness your way, Julie

    • Shelley Bailey on May 10, 2013 at 7:45 pm

      Hi Susan,
      My daughter was diagnosed with Narcolepsy/Cataplexy at age 15 and my co-workers sometimes joke that I’m slightly narcoleptic because of how fast I can go to sleep at my desk. I found your comment about scarlet fever interesting because my daughter also had it around age 3 or 4. When she was about five she said “I wonder if when you’re asleep you’re really awake and when you’re awake you’re really dreaming.” In retrospect I realize she had the disease for much longer than we thought. For many years whenever she got a fever she would get blisters on the palms of her hands too. We just submitted our DNA to 23andme, along with my Mom and Dad’s. We are curious to see if there is a genetic link. Sadly, like your family, most of my family views it as malingering and we’re both still trying to climb out of the depression it brought.
      On a final note, do any of your family members have an inner ear disorder called Menier’s disease? I’ve run across a few narcoleptics on various boards with it and am wondering if there is a connection. Take care and know that the generations behind you are getting better at spotting this! Shelley Bailey
      Fremont CA

  1068. Ms. S. on April 29, 2013 at 8:56 pm

    Just wondering what the current science might be in regard to the suggestion that orexin could also be associated with the formation of plaques in Alzheimer’s Disease? Referring to a 2009 study– http://www.ncbi.nlm.nih.gov/pubmed/19779148

  1069. ana marie juanga on May 4, 2013 at 7:05 am

    i love it…
    so inspiring…

    • julie on May 5, 2013 at 5:47 pm

      Thank you, Ana Marie!

  1070. erica on May 6, 2013 at 2:33 am

    thanks!! this was just what i needed to hear in regards to comparison: “my journey is my own”– love it! i LOVE yoga and i find i often compare myself to either the strength i used to have (pre-narcolepsy) or to others in class. i need to keep reminding myself of everything you said. 🙂

    • julie on May 6, 2013 at 4:20 pm

      Erica, I’m so glad this resonates with you! I try to close my eyes as much as possible during class to keep myself looking in and not comparing. 🙂 Your fellow yogi with narcolepsy, Julie

  1071. Emilee on May 6, 2013 at 6:35 pm

    Congratulations, Julie!!!

    • julie on May 6, 2013 at 7:13 pm

      Thank you, Emilee! I’m sooo happy. 🙂

  1072. Mark Patterson, MD, PhD on May 6, 2013 at 10:54 pm

    Julie,
    That is FANTASTIC!!! Congrats. We are all very proud of you and all that you do.

    • julie on May 7, 2013 at 2:26 pm

      Thank you so much, Dr. Patterson!

  1073. jenny wakefield on May 7, 2013 at 8:03 am

    Congratulations Julie. You deserve it for being such an inspiration to all us PWN

    • julie on May 7, 2013 at 2:25 pm

      Jenny, thank you so much for this kind comment! It means so much to me. Big smiles, Julie

  1074. sara gorman on May 7, 2013 at 1:13 pm

    Woohoo!!! That is SUCH exciting news!! Your book deserves it–it’s wonderful!!

    • julie on May 7, 2013 at 2:25 pm

      Thank you so much, Sara! Your support helped make it possible.

  1075. Darcie on May 7, 2013 at 5:26 pm

    Hi , I just recently found your blog. My 15yr daughter has been diagnosed with narcolepsy/ cataplexy . Sharing your experience with her has been uplifting and we are very great full your willing to share your story.

    • julie on May 7, 2013 at 5:29 pm

      Hi Darcie, I’m so sorry to hear your young daughter was recently diagnosed with narcolepsy/cataplexy. Thank you for supporting her experience and checking out my website. Sending big smiles, Julie

  1076. cindy on May 7, 2013 at 6:12 pm

    Julie, I am so happy for you! I shared a post on my facebook page about it.

    • julie on May 7, 2013 at 6:13 pm

      Thank you so much, Cindy!!

  1077. Gail Pean on May 7, 2013 at 9:40 pm

    Julie,
    Congrats!!!
    My book club loved your book and will not be surprised to learn the great news!!

    • julie on May 8, 2013 at 10:46 pm

      Thank you Gail for featuring Wide Awake and Dreaming in your book club! I’m so honored.

  1078. Kate Davies on May 8, 2013 at 1:18 am

    Hi Julie,

    I am so pleased for you, you deserve it! I have so many post it notes sticking out of the book where I can relate to exactly what you have written, as you know, this is such a refreshing change! I am soooo grateful to you for writing the book! I am also very grateful for your website and regular communications, you are a star, don’t know what I would do without you now!

    • julie on May 8, 2013 at 10:47 pm

      Thank you so much for your kind comment, Kate. I’m thrilled my book resonated with you. Love the post-it notes – what a great idea! With gratitude, Julie

  1079. […] Watch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* Cancel reply […]

  1080. […] #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: […]

  1081. […] and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: […]

  1082. […] about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* Cancel […]

  1083. […] Dreaming: A Memoir of Narcolepsy e-Book for FREE this weekend May 11-12, 2013. My book recently won first place in the San Francisco Book Festival Biography/Autobiography competition. Let’s celebrate with […]

  1084. Nicole on May 9, 2013 at 1:41 am

    So excited about this–thank you! I can’t wait to read it. I was also diagnosed with narcolepsy at 22 (I’m almost 25 now), and I’m eager to read another young woman’s account. Thanks, Julie!

    • julie on May 9, 2013 at 1:42 am

      Hi Nicole, Thank you for checking out my blog. I hope you enjoy my book. Sending wakefulness and big smiles your way, Julie

  1085. Kate Davies on May 11, 2013 at 1:49 am

    Hi Julie,

    This is amazing news, a huge step forward, it wouldn’t have happened without you! On behalf of all PWN, thank you!

    Kate

    • julie on May 14, 2013 at 2:20 am

      Thank you so much, Kate!

  1086. […] Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch […]

  1087. […] NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: […]

  1088. […] and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: […]

  1089. […] about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* Cancel […]

  1090. Sandy on May 14, 2013 at 1:54 pm

    I just got your book. I wanted to better understand what my 13 year old son was going through and what to expect in the future. Thank you for sharing your story. It is increadibly written. Great book.

    • julie on May 14, 2013 at 2:21 pm

      Thank you Sandy. I’m so glad my book can help you to better understand your son’s experience. With gratitude, Julie

  1091. […] Info:Narcolepsy Selected for FDA Patient Focused Drug Development Initiative (April 2013)Julie Flygare Represents Narcolepsy at FDA (March 2013) A Note of Thanks & FDA […]

  1092. […] & FDA Update  (November 2012)Representing People with Narcolepsy at the FDA (October 2012)Join Me: Urge FDA to include Narcolepsy in new patient-focused initiative (October 2012)FDA Initiative Materials (October […]

  1093. LINDA on May 15, 2013 at 12:41 am

    But… what about those of us who were born with it? Its dangerous to presume this is an autoimmune reaction when that’s only true in certain cases. I was born like this … stuck in REM.

    • julie on May 21, 2013 at 1:55 pm

      Hi Linda, An autoimmune reaction may be one path to developing narcolepsy, but there are other ways people develop it, for sure. Great point! Thank you, Julie

  1094. Stuart on May 15, 2013 at 7:38 am

    It’s 0135am and even though I am mentally exhausted after a long day, I’m lying on the couch going through your videos. I was diagnosed 3 years ago and I struggle to find the experience of having narcolepsy with cataplexy adequately explained. Your efforts are appreciated, I’ll be having a look at your book. Hopefully after a good sleep 🙂

    • julie on May 15, 2013 at 11:20 am

      Thank you for checking out my videos and book, Stuart. Sending wakefulness your way, Julie

  1095. doug dietrich on May 17, 2013 at 1:09 pm

    amphetamines are scarcely understood yet are highly effective in promoting wakefulness. as patent rights have expired, no profit motive exists to further research this proven, yet largely not understood, treatment option.

    today, there is new hope on the horizon for myself and others who benefit from this drug, and especially those who could benefit if it were better understood.

    • julie on May 21, 2013 at 1:56 pm

      Great point, Doug! Thanks for your comment.

  1096. […] Watch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  1097. […] Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and […]

  1098. […] and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle […]

  1099. […] Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  1100. Alex Withrow on May 22, 2013 at 7:51 pm

    I think it is so very important to debunk the myth that often clouds narcolepsy. Great information here Julie, for PWN and the general public as well!

    • julie on May 22, 2013 at 11:02 pm

      Thank you so much, Alex. Your support means so much to me.

  1101. tam kozman on May 22, 2013 at 11:34 pm

    thank you, julie, for advocating on our behalf!

    • julie on May 22, 2013 at 11:36 pm

      You’re very welcome. Thank you for your support, Tam!

  1102. Eric on May 25, 2013 at 11:14 am

    Thank you Julie for standing up for the people that have narcolepsy. I like to
    let people to know living with sleep disorders is not fun. I was first diagnosed
    with sleep apnea in 2006 thanks to my wife who is a R.N. she saw that was
    stop breathing multiple times though the night so she made me call our doctor
    who made me get a sleep study and failed it. I went to are family doctor who sent
    me to a sleep specialist doctor started me on a c pap machine it help a little but
    for last 6 years I still was falling asleep during the day my wife kept pushing to
    tell the doctor what was happening? Until she called my doctor and tell him what
    was happening he sent for a sleep study at night and the next day failed that study.
    Went to see him after the study I was diagnosed with narcolepsy. Then fun begin
    with the insurance company denied getting Modafinil so I kept calling every 2 to 3 weeks finally they approved me. I my advice when trying to get approved kept
    calling and document each call ask the persons name and case # and if you do not
    get any action ask for a manager or a supervisor to see what they can do. Plus make sure kept calling your doctor office and let them know what is going on
    with the insurance company so you doctor knows what is happening.

    • julie on May 25, 2013 at 12:29 pm

      Thank you for your comment, Eric. I’m so sorry to hear you’ve battled insurance issues too, but your great advice is invaluable for others!

  1103. Jennifer on May 25, 2013 at 2:56 pm

    Dear Julie,
    Thanks so much for your video on narcolepsy and exercise. It must have been a difficult transition for you to lose such a big part of your life while adjusting to your diagnosis and adjusting your lifestyle with narcolepsy. I am so glad that you have found that balance and that narcolepsy hasn’t prevented you from doing the things you love and being healthy.
    I was diagnosed when I was about 11 but there are plenty of sleepy stories all the way back to my early childhood. Although I don’t think I would have ever been a natural athlete if I had developed narcolepsy later in life, exercise is something that has been an ongoing battle in my life as I am often just too tired after a long day of work. But I have been working harder lately – trying to run more and train for a 5k as excercise does make me feel better and I am really learning to enjoy it more now. I love yoga too and have some crazy stories about napping and vivid dreams during shivasinya.
    One of the things that I find most jilting especially in the winter, is that I often need a nap after I get home from work to then feel like I have the energy to workout. And especially at the end of the day, a 10 -15 min nap which is rejuvinating in the am or lunch time for me, is not enough restorative rest at the end of the day. The end result is that I eat after my nap and then am not ready to workout until 7 or 8pm. This works ok in the spring and summer, but is hard in the winter. I have also found that sometimes I just need to get out and do it at the end of the day right after work ( I often go for a run/walk from my workplace) and that gives me more energy and I can just go to bed earlier if I need to and not take nap. But it is certainly a juggling act from day to day.
    Thanks so much for all the work you do. You are such an inspiration and you have helped me find a new source of empowerment in my life after several years of not connecting or even know anyone else with narcolepsy.
    Thanks again,
    Jenny

    • julie on May 25, 2013 at 3:15 pm

      Hi Jenny, thank u for checking out my videos. I’m so sorry that you’ve had narcolepsy for so long. Hang in there and know that I’m cheering for you.

  1104. Sharron on June 1, 2013 at 8:30 pm

    Thank you for sharing, Shelby. I loved your poem.

    • julie on June 6, 2013 at 6:54 pm

      Thank you for reading and leaving this comment, Sharron!

  1105. Johnnetta on June 3, 2013 at 8:13 pm

    That was beautiful. I work for SDS pharmacy and I deal w/ narcolepsy patients everyday. I read and loved Julie’s book Wide Awake and Dreaming. I was privileged to also meet her in person and I think it’s wonderful that you all speak out about living with this condition. I enjoyed your poem, it gives me a better perspective of what you all go through everyday. I can better connect with patients and it makes me feel blessed to have a part in helping make people’s lives better. You are in my prayers. Keep speaking and giving a real voice to narcolepsy!

    • julie on June 6, 2013 at 6:56 pm

      Thank you so much for your support, Johnnetta! It was an honor to speak at the SDS pharmacy. I’m SO glad you enjoyed my book too. Thank you for helping patients with narcolepsy everyday! Big smiles and many thanks, Julie

  1106. Darcie on June 9, 2013 at 4:28 pm

    My 15yr daughter has narcolepsy and is at the end of her freshman year. We struggle to have her 504 written in a way that properly covers all her needs and helps the teachers be properly educated on her condition. Even though we have given printouts and had lengthy talks with her teachers and school councilor, they refuse to accommodate to the most simple requests of her 504. Thank you for the continued work for teens with narcolepsy it’s still such an uphill battle.

    • julie on June 9, 2013 at 4:44 pm

      Hi Darcie,
      I’m so sorry to hear that your daughter’s school has not been accommodating. This is very unfortunate and unfair. Thank you for supporting your daughter’s experience. I hope things improve.

  1107. […] SLEEP 2013, I attended many fascinating sessions exploring the frontier of sleep science. I am not a […]

  1108. Hello from SLEEP 2013! on June 10, 2013 at 1:03 am

    […] Check out my Research Updates from SLEEP 2013. […]

  1109. […] At the meeting, new data from Finland, France and China further suggested a link between narcolepsy and H1N1 vaccination or infection. (In Finland and France – with Pandemrix vaccination. In China – with H1N1 infection without vaccination.) My first blog post on this topic is here. […]

  1110. Makky's Mom on June 10, 2013 at 3:11 pm

    Here in Canada, the general population age 6 months to 65 yrs, excluding pregnant women, received the adjuvanted H1N1 vaccine (not Pandemrix, but a slightly altered version called Arepanrix also made by GSK) in the fall 2009. It strikes me as strange that Canada’s statistics on this are not being published (though they MUST have been studied!).

    My daughter (4 yo at the time) received the adjuvated H1N1 vaccine in Oct 2009. She developed her first symptom of Narcolepsy 17 months later. Was it related? I don’t know, however, I do know that 10 weeks before her first narcolepsy symptom, she had a very nasty flu-like illness (had not been vaccinated in 2010) that might have been H1N1, followed 6 weeks later by a severe viral and bacterial pneumonia. It was 3 weeks after the pneumonia (and 10 weeks after the flu) that she had her first narcolepsy symptom. Because flu testing was never done, we will likely never know the true trigger of her narcolepsy but my bet is that it was the combination of the flu and pneumonia in the weeks preceeding her symptoms that were the culprits, not the vaccine the year before.

    • julie on June 10, 2013 at 3:37 pm

      Hi Makky’s Mom – Thank you for your comment. To the best of my knowledge, I haven’t seen Canada’s statistics published yet either. This is curious as well, especially given the widespread vaccination. It sounds like your daughter’s immune system was compromised a few times, likely leading to the full symptom development. So challenging. Thanks for reading my post and advocating for your daughter! -Julie

      • Mark Patterson, MD, PhD on June 11, 2013 at 2:22 am

        Hi,
        At the meeting they mentioned that, as you noted, the pandemic H1N1 flu vaccine used in Canada was adjuvanted, but with MF59, not the AS03 used in the Pandemrix vaccine used in northern Europe. They also noted that there was not a spike in cases of narcolepsy in Canada as seen in Europe. As such, the Canadian vaccine did not seem to trigger a response. They also noted that most of the children who developed narcolepsy from the vaccine started having symptoms within 8 weeks of receiving the vaccine. I am sorry to hear about your daughter, but she probably did not get narcolepsy from the H1N1 vaccine. Good luck!

  1111. Laura on June 10, 2013 at 3:11 pm

    Thanks for sharing the updates on this, Julie. I’ve been following this topic closely–my sleep symptoms started in fall 2010. I don’t remember exactly when I got the H1N1 vaccine–but it seems like it would have been sometime in spring/summer 2010. I know the connection they’ve demonstrated is only to the Pandermix vaccine, which wasn’t used in the U.S., but I still can’t help but wonder if there’s a connection in my case.

    • julie on June 10, 2013 at 3:39 pm

      Hi Laura,
      Thank you for reading and commenting here. I’m so glad you’ve been following this issue closely. I believe the flu vaccinations are generally given in the fall, in preparation for the winter flu season. I also wonder about a connection in the U.S.
      Sending wakefulness your way,
      Julie

  1112. Elaine Armstrong on June 10, 2013 at 7:14 pm

    Hi Julie,
    Such a pity Ireland’s data wasn’t mentioned. Thank you for keeping us all updated with your Sleep Research 2013.. Great work as always and we really appreciate you continued efforts for keeping us in the know !!
    Your Irish friend,
    Elaine

  1113. Nancy Waldman on June 11, 2013 at 5:00 am

    HI Julie,
    I have a 12 year old daughter with narcolepsy. She loves to write and would like to share her experiences with other young people dealing with narcolepsy. Is there somewhere that you would recommend that she could share her writings?

    • Jessica on June 17, 2013 at 11:37 am

      There are a number of places she can go to connect with other people with N – one is the NN forum at the narcolepsynetwork.com and then there are a number of Facebook groups – a good one might be narcolepsy pen pals. There are a few teens I know of as well as parents who are moderating for their child with n.

  1114. Nancy Waldman on June 11, 2013 at 5:11 am

    I was told that it is an inherited condition. I have a mild case, and my daughter, a severe case. I am pretty certain that my mother also had it, but was undiagnosed. Do you think that treatments will differ based on how it was acquired?

  1115. Mairead Lawless on June 11, 2013 at 5:48 am

    http://www.dohc.ie/publications/Nat_Narcolespy_Study_SC_Report.html

    This is the Irish report into the development of Narcolepsy after Vaccination with Pandemrix. The data is there but they don’t seem to want to talk about it!!
    Sufferers of Unique Narcolepsy represents almost 60 children and adults affected. There were two new diagnoses last week. People (mostly children) are still coming forward!!!

  1116. Paula on June 11, 2013 at 5:06 pm

    My 10yr old son was just diagnosed in May with Narcolepsy, his symptoms started this March (2013). Do you know of any good sites or info. for parents with kids with Narcolepsy? He was such an active kid was in every sport and excelled in Baseball also was top of his class and was in all advanced classes. This has turned our lives upside down. Thank you

    • julie on June 11, 2013 at 5:50 pm

      Hi Paula, I’m so sorry to hear your young son was recently diagnosed. My website, book, blog and videos are leading resources for people with narcolepsy and their loved ones. I have listed addition organizations under “resources.” Visit Narcolepsy Network’s site for a listing of support groups across America.

      Thank you for supporting your son.
      All my best,
      Julie

  1117. REM Runner’s 21 Day Yoga Challenge on June 14, 2013 at 1:55 pm

    […] taking on a new challenge – doing yoga every day for 21 days! Returning from SLEEP 2013, my energy was low and my pants were tight. I […]

  1118. laura j. evert on June 15, 2013 at 4:40 pm

    go go julie! think if it as a treat for your mind + body because really it is. not a chore, a gift you give to yourself everyday. oxx

    • julie on June 16, 2013 at 1:47 pm

      Thank you so much, Laura! This is a FABULOUS way to look at it. 🙂

  1119. […] First Place in San Francisco Book Festival Biography/Autobiography Award […]

  1120. […] Amazing Book Launch Party […]

  1121. […] My book travels around the world! […]

  1122. […] Featured by Book Club […]

  1123. […] on the Dr. Don Show & XM Sirius […]

  1124. […] Interview on the Dr. Don Show & XM Sirius […]

  1125. […] my darkest moments was rewarding and the right choice. As Brene Brown says, “Vulnerability is not weakness… it’s emotional risk, exposure, uncertainty… […]

  1126. […] julie on June 16, 2013 The past six months, my book has reached readers all over the world. Here are some […]

  1127. Elaine Armstrong on June 16, 2013 at 1:56 pm

    Wow Julie…CONGRATULATIONS and WELL DONE YOU…… Wouldn`t have exspected anything less for such a truely amazing inspirational lady !!

    • julie on June 20, 2013 at 3:18 pm

      Aww, thank you, Elaine. You are SO sweet. 🙂

  1128. Laura on June 16, 2013 at 3:08 pm

    Yay, Julie!

    • julie on June 20, 2013 at 3:17 pm

      Thank you, Laura!

  1129. erica on June 16, 2013 at 4:42 pm

    i recently found http://www.yogadownload.com/ and its amazing! i find it so hard to do yoga at home and to stay motivated or do it without getting distracted by something more “productive”. but its also really hard to fit class times into my schedule some weeks. there are a ton of free download videos and audios on this website and i really enjoy most of them! i do yoga so much more often now at home!! and its nice to change it up from the dvds that i got sick of!

    • julie on June 16, 2013 at 4:56 pm

      Oh great idea, thank you Erica!! I’ll check this out. Namaste. 🙂

  1130. Gail Pean on June 17, 2013 at 2:21 pm

    Congratulations Julie! I am so happy to learn so many people are learning about Narcolepsy and Cataplexy while enjoying your description and creative writing. My book club loved it and thought you write like Ernest Hemingway! We can’t wait to read your next book! Happy writing and half birthday to Wide Awake and Dreaming!!!

    • julie on June 20, 2013 at 3:17 pm

      Dearest Gail – thank you for supporting me from draft 1 to the final product to featuring my book in your book club. Much love, Julie

  1131. cindy on June 18, 2013 at 7:29 am

    So happy for you. Love the pictures 😉

    • julie on June 20, 2013 at 3:17 pm

      Yay! Thank you for all your support, my fellow writer, Cindy!

  1132. Chris on June 20, 2013 at 3:15 pm

    Thanks Julie for writing such a great book and bring to the world the story of Narcolepsy and Catalpexy.

    Times of great calamity and confusion have ever been productive of the greatest minds. The purest ore is produced from the hottest furnace, and the brightest thunderbolt is elicited from the darkest storm. – Charles Caleb Colton

    • julie on June 20, 2013 at 3:16 pm

      Thank you so much, Chris!

  1133. Jan on June 22, 2013 at 3:24 pm

    I have sleep apnea and RLS my physician thinks I have narcolepsy also. I cannot concentrate or remember anything I am desperate to save my job what can I do?

  1134. Why Yoga Pisses Me Off on June 24, 2013 at 10:59 pm

    […] 2/3rds done with my 21 Day Yoga challenge, but a few sessions behind – ek! I plan to double up a few days this week. My body aches but […]

  1135. Jill on June 25, 2013 at 5:14 am

    Good job Julie! Keep it up!

    PS. Pigeon is my favorite pose to use in a post-run stretch. 🙂

    • julie on June 25, 2013 at 3:26 pm

      Thank you for your encouragement, Jill! You’re amazing. Once I get in my yoga groove, I love pigeon so much. Still trying to get there… 🙂

  1136. Rhonda on June 25, 2013 at 10:00 pm

    Hi Julie
    You are an inspiration! I live on the other side of the world in New Zealand and also suffer from Narcolepsy with cataplexy. I have recently lost my drivers licence as a result and my world feels like it diminishes more and more every year as my condition grabs hold. I took your advice and started yoga yesterday – really enjoyed it. The poses where somewhat challenging although I imagine they will get easier in time. I even managed to stay awake. I felt great afterwards and am really looking forward to my next class tomorrow. I am sure there will be plenty of junk in my trunk and your experience will help me deal with that in a more positive light.

    I have just been filming a documentary here in NZ regarding narcolepsy in the hope that we can increase awareness of the condition. It should screen next week. If you are interested I am sure there is some way technology will allow us to get it to you.

    Take care

    • julie on June 25, 2013 at 10:31 pm

      Hello to Rhonda in New Zealand!

      I’m so sorry to hear that you live with narcolepsy and cataplexy too and recently lost your drivers licence. I imagine this is a very challenging time of transition.

      I’m thrilled that you’ve found my website and that my yoga post inspired you to give it a try! Yes, please send me the link to your documentary – I’d love to share it. Thank you for raising awareness.

      Sending wakefulness and big smiles across the globe to you! 🙂
      Julie

  1137. Roseanne Blum on June 26, 2013 at 1:47 am

    As I have been having a hard time having the energy and motivating myself to practice yoga at home, reading your entry today makes me really want to create a goal for myself having to do with exercise and yoga. I use to practice regularly but like you, I never have done it at home. This past winter, I had a hard time finding the right dosing for my narcolepsy and I also was not able to nap at the same time every day as suggested by my sleep doctor. And I have just been struggling with my exhaustion. I know yoga really helps, but I have not had time to go to classes; therefore, I think practicing at home would be beneficial. I think I will choose 4 days a week to practice and try not to deviate. I hope you let us know how you did with your personal challenge. Your blogs and the article you wrote for HuffPost have been very inspirational to me, and I plan to purchase and read your book this summer. Thanks!

    • julie on June 26, 2013 at 2:34 pm

      Hi Roseanne,
      Thank you so much for your comment! I’m so sorry to hear that you’ve been struggling with narcolepsy. For me, I have good days and bad days. Having small achievable goals really helps me stay positive and feel productive. I thnk 4 days a week is a great goal. Possibly schedule exact days and times and list these times in your schedule so you stick to it. Even 10-15 minutes is FABULOUS and once you start going, you may continue for longer! Thank you for checking out my book – I think you will really enjoy it!
      Sending wakefulness and positive yoga energy your way,
      Julie

  1138. REM Runner’s 21 Day Yoga Challenge on June 26, 2013 at 2:38 pm

    […] taking on a new challenge – doing yoga every day for 21 days! Returning from SLEEP 2013, my energy was low and my pants were tight. I needed a short-term goal to jump-start my […]

  1139. REM Runner’s 21 Day Yoga Challenge on June 26, 2013 at 2:40 pm

    […] June, I took on the Mount Washington Road Race to honor my father for Father’s Day. Although my yoga challenge isn’t as monumental, I […]

  1140. A Narco’s Tale: A Poem by Maureen Caden on June 27, 2013 at 3:07 pm

    […] inspiring narcolepsy poetry:My Twisted Fairytale by Shelby SteinTears on My Face by Elizabeth Olsen […]

  1141. A Narco’s Tale: A Poem by Maureen Caden on June 27, 2013 at 3:07 pm

    […] inspiring narcolepsy poetry:My Twisted Fairytale by Shelby SteinTears on My Face by Elizabeth Olsen […]

  1142. Things I love: Powerful Poetry on June 27, 2013 at 3:13 pm

    […] Narcolepsy Poetry:My Twisted Fairytale by Shelby SheinA Narco’s Tale by Maureen Caden […]

  1143. My Twisted Fairytale: A Poem by Shelby Stein on June 27, 2013 at 3:15 pm

    […] Narcolepsy Poetry:Tears on My Face by Elizabeth OlsenA Narco’s Tale by Maureen Caden […]

  1144. My Twisted Fairytale: A Poem by Shelby Stein on June 27, 2013 at 3:16 pm

    […] Narcolepsy Poetry:Tears on My Face by Elizabeth OlsenA Narco’s Tale by Maureen Caden […]

  1145. Things I love: Powerful Poetry on June 27, 2013 at 3:17 pm

    […] Narcolepsy Poetry:My Twisted Fairytale by Shelby SteinA Narco’s Tale by Maureen Caden […]

  1146. Gail Pean on June 28, 2013 at 1:22 pm

    Great poem and post! Thanks for sharing.
    I love the quote that dreams have no expiration date.

    • julie on June 28, 2013 at 3:59 pm

      Thank you so much for this kind comment, Gail! I love this quote too. Here’s to chasing our dreams!

  1147. Top 8 Tricks for Accessing “Happy” Now on June 28, 2013 at 3:50 pm

    […] something – art journaling, painting, writing, […]

  1148. Alex Withrow on June 28, 2013 at 4:36 pm

    So proud of you for sticking with this challenge! I agree, yoga definitely isn’t easy, but you’re an inspiration for doing the challenge 🙂

    • julie on June 28, 2013 at 5:53 pm

      Thank you for the encouragement. It means so much to me.

  1149. Alex Withrow on June 28, 2013 at 4:37 pm

    Con. Grat. U. Lations.

    I know this is a dream for you, and you did it. So proud of you.

    • julie on June 28, 2013 at 5:53 pm

      Thank you, Alex. I’m still on cloud 9!

  1150. Alex Withrow on June 28, 2013 at 4:39 pm

    Love this. Smiling is seriously underrated. I truly think the act of smiling just makes you feel better.

    Great tricks!

    • julie on June 28, 2013 at 5:53 pm

      I agree. 🙂

  1151. Alex Withrow on June 28, 2013 at 4:40 pm

    I like this a lot. I was curious how it was going to conclude, but it did so perfectly.

    Thanks for sharing!

    • julie on June 28, 2013 at 5:53 pm

      Thanks for reading and commenting, Alex! That means a lot from a great writer!

  1152. Laura on June 28, 2013 at 5:18 pm

    Love it! Have you read any of the books by Sonja Lyubomirsky? She’s a research psychologist who studies happiness, and has two books on her findings geared toward the general public. They’re both on my “to read” list!

    • julie on June 28, 2013 at 5:52 pm

      Oh, I will have to check Sonja Lyubomirsky’s books out! Sounds fabulous. Thank you for your comment, Laura!

  1153. Peter Mansbach on June 28, 2013 at 6:37 pm

    I always hoped there might be an advantage for those of us who can’t multitask: I guess it’s easier to live in the moment!

    But I have to disagree that a smile brings more pleasure than 2,000 bars of chocolate (of course that’s assuming you don’t try to eat all 2,000 bars at one sitting). Come to think of it, I think I’ll have to do the research and put this to the test…. 🙂

    • julie on June 29, 2013 at 12:28 am

      Lol – let me know how this experiment goes! 🙂

  1154. […] and fellow narcolesy advocate, Dr. Mark Patterson, to share some important information from the APSS SLEEP 2013 meeting.  Thank you so much, Dr. Patterson, for this thoughtful well-written […]

  1155. maureen on June 30, 2013 at 5:13 am

    Julie
    I loved this post. And when you mention the children the bullying etc it brings a tear to my eye. We know it gets better through experience as we gain knowledge and understanding is that because we are that little bit older? But, for the young ones my concern is that it can take that little bit longer and peer pressure for not being normal can cause many an issue. This has got me thinking lol…. hmmm 🙂 Sending a Nhug out to all. x

    • julie on June 30, 2013 at 12:54 pm

      Thank you for your comment, Maureen. Yes, I hope to inspire young ones that it gets better, both with time since one’s diagnosis, and as everyone around us matures into adults. 🙂 Sending hugs, Julie

  1156. Arnold Gendelman on June 30, 2013 at 9:33 am

    http://www.thechangeworks.com/cwproducts/creativity_6.html

    Excellent subject. Accessing the above link find The Humour Project” that can be downloaded for a reasonable price. The affect of it on ones attitude is a miraculous smile appearing in your life all of a sudden, unrehearsed , unexpected and sticks. Humour makes you smile.
    I can verify the utility of this program and others like it found on this site.
    I have used them for many years to my complete advantage overriding the many angles a that the narcoleptic cloud hangs over our heads following us everywhere, and when we did not know why. Relax, listen and your automatic brain rewires itself to follow new patterns of functions that well, smile, talk and see things differently, with Humour.

    • julie on June 30, 2013 at 2:47 pm

      Thank you, Arnold! This is a fabulous suggestion! I can’t wait to check out the Humour Project CD. Thanks again for reading and commenting. Sending wakefulness and smiles your way, Julie

  1157. Emo on July 1, 2013 at 4:05 am

    A good friend indeed! I admired her keen insight. She most often she saw through all the stuff and nonsense and pinned down the truth. Wrote with precision. She always listened carefully to, and respectfully considered anything you had to say. A good supporter of the old Nlist and the associated e[N]dless supper.

    Worked too hard for us, though.

    • julie on July 1, 2013 at 4:06 pm

      Thank you so much for your kind comment. Sharon was so respectful and wrote with incredible precision. We will miss her so much!

  1158. Alex Withrow on July 1, 2013 at 9:51 pm

    Great write-up here, Dr. Patterson. So much useful information. Thanks for taking the time to guest post on Julie’s blog!

    • julie on July 1, 2013 at 11:35 pm

      Thank you, Alex for reading this post and commenting! I agree, great write-up, Dr. Patterson!

      • Mark Patterson, MD, PhD on July 8, 2013 at 1:12 am

        Thanks so much Alex and Julie. I am always honored to have the opportunity to post on Julie’s influential blog. In the world of narcolepsy, education is critical!

  1159. Alex Withrow on July 1, 2013 at 9:53 pm

    I firmly believe that no one is normal. We all have our differences that make us who we are.

    Love this video 🙂

    • julie on July 1, 2013 at 11:36 pm

      Yes, no one is truly normal. The sooner we can embrace this, the better! Thanks for checking out the fun video.

  1160. Alex Withrow on July 1, 2013 at 9:55 pm

    What a fine tribute post here, Julie. I’m sorry you lost a great friend in Sharon. Sounds like her tireless work in your community will be regarded for many, many years.

    • julie on July 1, 2013 at 11:35 pm

      Thank you, Alex. She was an amazing woman. I wish you would’ve had an opportunity to meet her.

  1161. […] julie on July 2, 2013 While speaking at SLEEP 2013, a doctor asked a great question: “Are there things I should or shouldn’t say to my […]

  1162. Peter Mansbach on July 2, 2013 at 7:03 pm

    Great suggestions, and most of them apply also to people with circadian sleep disorders. The question I struggle with is this: treatment takes a lot of effort, and for many people they push through a lot of pain and sleep deprivation before it succeeds. Yet for many it never succeeds. Do you tell patients starting out that it may not succeed – as we do on our web site – and have some of them not make the full effort? Or do you say, as many doctors do, that treatment always works, just stick with it – and then people feel like failures, and sometimes push themselves into illness?

    • julie on July 2, 2013 at 7:13 pm

      Peter,

      Great comment and question! My personal beleif is that it’s important to give hope but also set reasonable expectations – aka this could work, but it may not.

      Unforunately, sometimes there are no good solutions – especially for illnesses like IH and Circadian Sleep Disorders. I think not having good solutions makes doctors uncomfortable and patients angry, so doctors tend not to want to address cases that they can’t “fix.”

      No patient should feel like a failure. It’s a failure of medicine/science, not individuals. I think your approach of letting patients know right away is a good call.

      Thanks again,
      Julie

      • John on June 3, 2014 at 8:42 am

        It is wonderful to emphasize that the disorder and its symptoms are not the fault of the patients (of which I am one), but with sleep disorders it is especially important to stress the fact that there are things that the patient needs to do to minimize the symptoms, as well as things that can undermine their efforts to be as productive as possible. Speaking from experience, it is very easy to adopt a fatalistic attitude, believing that there is nothing you can do and that it will never get better. This can lead to depression, which then compounds with the narcolepsy to make you even more tired and less motivated and productive. I don’t want to say that patients use narcolepsy as an excuse, since that implies that they are using the excuse for selfish ends to get what they want. Rather, it is feels like a hole that we forget forget how to climb out of, and need to be reminded that we do actually have power over this disorder and our lives.

  1163. Tamara Sellman on July 2, 2013 at 8:29 pm

    Oh and never say, “well at least you don’t have cancer.” Ever.

    • julie on July 2, 2013 at 11:55 pm

      Totally agree, Tamara! My doctor once said, “It could be worse.” While he was probably right, it certainly didn’t acknowledge the challenges of narcolepsy.

      • Makky's Mom on July 3, 2013 at 11:54 am

        I get that ALL THE TIME when talking about my young daughter with a severe case of narc and cat. “At least she isn’t dying! It could be worse” is a common comment. Perhaps it’s because people just don’t know what else to say…

  1164. Micah Hunter on July 2, 2013 at 9:00 pm

    I hate it when doctors tell me to exercise and eat better in a tone that suggests that will cure it. I know that doing both is good for your body but I also know that doing it is not going to make narcolepsy go away. I think when doctors have narcolepsy patients they should work with the patients on detailed day to day plans and small daily goals to achieve. The doctors I’ve had all pretty much said “here’s the meds, live a healthy lifestyle, and call if the meds stop working!”

    • julie on July 2, 2013 at 11:56 pm

      Good point, Micah! I agree. I often say narcolepsy improves my life generally, but is not a cure for my symptoms. I’m sorry to hear your doctor is fairly hands off in the treatment process. Hang in there and thanks again for your comment.

      • Makky's Mom on July 3, 2013 at 11:53 am

        Even though I haven’t gotten a diagnosis of narcolepsy or any other sleep disorder, I was evaluated with sleep studies last year. I was in the grey zone between pathological sleepiness and what’s considered within the norm. After explaining to the sleep doc that this had not been my first pit-stop for help – that I had optimized my iron level, my thyroid, my nighttime sleep and general sleep schedule, stopped working nightshifts, no longer have little babies that keep me up at night, eat better, and had even taken 2 full years of antidepressants to get me more motivated and energetic about life – the ONE THING he latched onto was the fact that I wasn’t exercising regularly (as in going to a gym). He said “well, you need a gym membership. If you just start fitting daily gym time into your days you’ll find you have more energy!” Oh-My-Gosh – I could have ripped his tongue out! It was like he was totally minimizing my sleepiness and basically blaming me for all my complaints and saying I wasn’t doing what I needed to do to feel better! I was so NOT impressed! I get it that exercising regularly can (and does) help, but it isn’t “THE ANSWER”.

  1165. Audrey on July 3, 2013 at 3:31 am

    Thanks for asking, Julie.

    I heard someone say recently that they were told “narcolepsy gets worse with age” and this made me think. Mine has gotten better with diagnosis and attentiveness and care, not worse. And sometimes it’s acute and other times it feels like it’s remote. So, I think they could say “Narcolepsy symptoms can fluctuate over time and throughout your life. It’s great to take note of influences that seem to make it more accute, and less — you will learn to guide yourself well if you pay attention.”

    Also, I think it should be said that Narcolepsy is unique BUT like many other disorders, stress is a core contributer to how strong the symptoms are. So, learning some stress reduction practices can be very supportive.

    I wish my doctor had told me that, while Narcolepsy is not psychological, it does affect so much of life, and therapy can be a good way to reflect on that and move forth with more understanding.

    Also, I wish my doctors had told me about Narcolepsy Network and the annual conference. It took me years after diagnosis to attend a support group, and a good while after that to discover NN and the conferences.

    • julie on July 3, 2013 at 4:04 am

      Audrey –

      These are fabulous suggestions! Stress management is something I’ve never paid much attention to, but certainly should. Something just clicked for me reading this. 🙂

      I agree, support groups, therapy and the NN conference should all be important resources mentioned early on. I know I’m still trying to get the word out about my book to sleep doctors to let patients know about this resource too.

      Here’s to a brighter future! Thanks again, Julie

      • Andrea on July 7, 2013 at 6:04 am

        I love that whole quote, Audrey, and I definitely second that about stress management. Although I often say that nothing makes narcolepsy better, stress is one thing that definitely makes it worse. (By “nothing” I mean no simple lifestyle changes, no little tips or tricks that might help a normal person sleep better, like limiting computer time before bed. Nothing that a well-meaning friend might suggest.)

  1166. Laura on July 3, 2013 at 5:21 am

    At the moment, I’d be happy if my doctor would say ANYTHING to me! He scheduled my first follow-up appointment five months after my initial appointment, and he’s been unreachable by both phone and e-mail (despite lots of attempts on my part). He rescinded my driving privileges, which is fine, but he hasn’t made himself available to fill out the medical paperwork that DMV requires. His office has confirmed that my sleep study results are back (about a month ago), but I still don’t know what they are, because my doctor hasn’t called or released them to a nurse to call me. I know that’s not really what the post is about, but I’m just so frustrated at the moment. Forgive the venting!

    My primary care doctor has been really great. Every time I see him, even if it’s for an issue unrelated to sleep, he asks how things are going, and how I’m feeling. I would definitely put that under the “things to say” category. It always helps to feel like your doctor cares how you’re doing, but I think with any illness where you have to focus on symptom control rather than a cure (like narcolepsy, IH, circadian disorders, etc.), it’s especially key to check in at every opportunity.

    I’d also echo what Audrey says about suggesting supports for managing–be it therapy, support groups, etc. I’ve seen three sleep specialists in the last two years, and none of them mentioned word one about anything like this. The things that have helped me the most–keeping a symptom diary, taking naps, changing my diet–have all been things I’ve discovered on my own or learned about through fellow sleep disorder suffers or support groups (and some from my primary care doctor). I think it’s also important that a doctor ask what your goals are–do you need accommodations so you can work or go to school, are you interested in trying lifestyle interventions in addition to / instead of medications–rather than simply prescribing a “one size fits all” program.

    Great post, Julie! And how cool is that doctor that he would ask that question during the panel discussion!

  1167. Corey on July 3, 2013 at 9:56 pm

    I was newly diagnosed and the only information on Narcolepsy I had was what I had researched, I was very held up on if I could ever have children. When I asked my doctor he told me I was too emotional to discuss it and we would talk later about if it was a possibility.

    I just wish that they could provide better information then a pamphlet I received on my second follow up.

  1168. B.K. on July 6, 2013 at 5:54 pm

    I think doctors should never make any reference that Narcolepsy is not life threatening, just altering. I used to think it was okay but recently this year my teenage daughter did almost take her life because of her Narcolepsy and all of its complexity. I think support is essential for all PWN. Unfortunately we have not found that any group for our daughter over the last 8 years. It seems that the support groups at least in the Chicagoland area are for adults. So that leaves family, friends, and private counseling.
    We all need to have hope and push to find the best possible treatment available. It is exhausting and frustrating at times but there are wonderful medical people who are out there that want to help!!! You just have to keep searching till you find them:)

  1169. maureen on July 7, 2013 at 6:46 pm

    I just wanted to pass comment to B.K.
    I just wanted to send you all a Nhug (a narco hug) all the way from Dubai. Please let your daughter know that from across the big pond someone is thinking of her she is not alone. xxx

  1170. chrys on July 8, 2013 at 5:07 pm

    Hi Julie,
    I have not had any issues with my 9 year old regarding school. Part of that may be due to the first day of kindergarten I had made the teacher aware something was wrong and to please bear with us while we worked to see what was going on. It also helped that this is a small school. Once he was diagnosed by that time he was in second grade we all let out a collecective sigh. My concern is the medical community. We have a childrens hospital however the only specialist in sleep disorders is gone, the sleep disorder clinic and neurology can still handle the medications however I am at a loss as to what to do when we need additional info. Currently we are in Delaware. Thank you in advance.

    • julie on July 11, 2013 at 4:43 pm

      Hi Chrys, I’m very sorry to hear about this current trouble with the medical community in your area. I am not a medical expert, just another patient, but I would recommend possibly considering seeing Dr. Judith Owens at Children’s National Medical Center in Washington, DC. She’s an amazing narcolepsy pediatric specialist. Hope that helps! Thanks for supporting your son’s experience. Sincerely, Julie

  1171. Nocturne on July 10, 2013 at 7:03 am

    Hi,

    I’d like to add something to this list that I’ve been experimenting with:
    posture. Although it is sometimes very hard to remain upright when tired,
    investing good hip posture, an active ‘core’ and a good head/neck-posture
    seems to help me a lot. (think: fake it, till you make it, again…)

    The tendency to slouch when tired only stimulates the brain more into
    thinking negative and ruminating too much.

    Just a tip!

    • julie on July 11, 2013 at 4:42 pm

      What a great tip! Thank you so much for adding this awesome idea. I’ve been paying more attention to my posture since reading your comment. Thanks again for reading and commenting on my blog, Julie

  1172. chrys on July 10, 2013 at 6:50 pm

    Thank you Julie. Because of your book and your blog I am better able to understand what my son is going through.

  1173. Perception TV Show Features Narcolepsy on July 10, 2013 at 10:26 pm

    […] Excessive daytime sleepiness […]

  1174. Perception TV Show Features Narcolepsy on July 10, 2013 at 10:37 pm

    […] into his bedroom shortly after he’s gone to sleep. This terrifying description caputures sleep paralysis (the inability to move) AND hypnagogic hallucination (seeing the aliens in his bedroom as if real). […]

  1175. Perception TV Show Features Narcolepsy on July 10, 2013 at 10:37 pm

    […] The character also mentions sleepiness and slurred words. The slurred words would be a sign of cataplexy, a symptom of […]

  1176. Perception TV Show Features Narcolepsy on July 10, 2013 at 10:39 pm

    […] hypnagogic hallucination (seeing the aliens in his bedroom as if real). The character also mentions sleepiness and slurred words. The slurred words would be a sign of cataplexy, a symptom of […]

  1177. Perception TV Show Features Narcolepsy on July 10, 2013 at 10:40 pm

    […] Learn more about NARCOLEPSY /* Cancel reply […]



  1178. Jackie Quinn on July 11, 2013 at 1:46 pm

    This is fantastic! For once, narcolepsy isn’t a punchline. Congrats to Perception! I will definetely share this one.

    • Patricia Higgins on July 11, 2013 at 2:30 pm

      Thank you for posting this. I am tear filled and happy to have this clip. I think it can be the ground-breaker for all PWNC. Thank you Julie and Melody from the bottom of my heart. What an emotional exciting day for all of us with and without narcolepsy.

      • julie on July 11, 2013 at 4:40 pm

        Thank you for your comment, Patricia! It is an exciting day indeed! 🙂

    • julie on July 11, 2013 at 4:41 pm

      Yes, exactly, Jackie! Narcolepsy isn’t the punchline. So proud of Perception for getting it right!

  1179. Lexi on July 11, 2013 at 3:09 pm

    Thanks so much for writing this article. I’m 16 and I have narcolepsy, and I suffer from all of the other symptoms that come with it. I have a really tough time at school – a lot of my friends don’t talk to me anymore because I’m aggressive and quiet, I fall asleep in class almost every day and miss vital notes and lectures that cause me to fail other things and my grades drop significantly… I used to be a 3.8 to 3.9 student, but this past year I got a 3.4. I’ve also had teachers ridicule me when I fall asleep, and sometimes my own parents are mean about it. It’s nice to see narcolepsy described in this way because it’s exactly how my day to day life feels. I’ll probably end up using this article to explain to people how I feel, since I’m horrible at doing it myself and other articles don’t quite cut it. Thanks again!

    • julie on July 11, 2013 at 3:22 pm

      Hi Lexi,

      I’m so sorry you have narcolepsy at age 16. You are overcoming invisible adversity daily and I know what it takes to get through every day with narcolepsy – you are a hero. My grades suffered too when adjusting to narcolepsy, but 3.4 is stil very impressive. Hang in there! I’m cheering for you.

      Please share this blog along with my memoir with your friends and family. My memoir has been very helpful for family members of people with narcolepsy and it’s a quick fun read.

      Sending wakefulness and smiles your way,
      Julie

  1180. Peter Mansbach on July 11, 2013 at 6:11 pm

    The Montefiore Sleep Center is not only a narcolepsy center: they first elucidated Delayed Sleep Phase Syndrome. I was diagnosed with DSPS there, even before the seminal paper appeared.

    • julie on July 11, 2013 at 10:51 pm

      Oh, that’s so cool, Peter. Thanks for sharing. I’m a big fan of Montefiore’s sleep team.

  1181. TheDreamer on July 11, 2013 at 9:13 pm

    Yeah, I thought they did a good job with that, though didn’t think to share it with anybody….

    • julie on July 11, 2013 at 9:16 pm

      Thanks for your comment. Glad you saw this too!

  1182. Alex Withrow on July 11, 2013 at 9:53 pm

    LOVE this infographic. You and Anthony did an amazing job putting it together. Clean, informative, sharp. Love it!

    • julie on July 11, 2013 at 10:00 pm

      Thank you, Alex! I <3 the infographic too. Thanks for supporting me through this process.

  1183. Alex Withrow on July 11, 2013 at 9:53 pm

    Congrats on being filmed for the TV show! Can’t wait to see the final program. Love that picture of you, by the way 🙂

    • julie on July 11, 2013 at 10:50 pm

      Thank you, Alex. It was a very fun experience!

  1184. Matt Landy on July 11, 2013 at 11:43 pm

    7/11/13

    Julie:

    Once again, you have hit “the nail on the head” when you wrote about what to say & what not to say to an individual diagnosed with Narcolepsy….

    Unfortunately, in my opinion, the time has come for states and the Federal Government to require a simple yes or no answer to all applicants seeking licenses , such as driving, flying. etc. and not just commercial transport.
    We with Narcolepsy have many rights, but it is time we recognize that we have responsibilities as well, one such responsibility is not to put other people in danger.

    You have national recognition as a spokesperson for all of us and your endorsement of this position would be very powerful and meaningful for every one.

    Matt Landy

  1185. Lloyd on July 12, 2013 at 12:50 am

    Hey Julie! I love it. We have an infographic for Idiopathic Hypersomnia and it really seems to help the “casual viewer” grasp the concept of these diseases much more quickly than a page of text.

    In case you’re interested, this is what the IH one looks like:
    http://www.livingwithhypersomnia.com/idiopathic-hypersomnia-infographic/

    🙂

    • julie on July 12, 2013 at 5:18 am

      Hi Lloyd, Thank you for your comment. In my research I came across the IH infographic. LOVE it! Thanks again, Julie

  1186. Kathleen Randell on July 12, 2013 at 3:18 am

    Awesome! So creative and eye catching. Straight to the point, easy to understand and memorable. Thanks for all you do!

    • julie on July 12, 2013 at 5:19 am

      Thank you so much for your kind comment, Kathleen! I’m so glad you find it easy to understand and memorable.

  1187. Charlie on July 12, 2013 at 3:52 am

    This is a really great infographic! I have one question, though (really just clarifying for me). I thought that recent research points to N being an autoimmune disorder? Is it still classified as neurological because those are the cells targeted by the immune response and the resulting symptoms are neurological in nature? Sometimes I don’t know what to tell people when they ask because I keep seeing N referred to as one or the other.

    • julie on July 12, 2013 at 5:24 am

      Hi Charlie, Thank you for your comment. Yes, your understanding is on-point! Narcolepsy is a neurological disorder, and it is believed to be autoimmune with the autoimmune attack leading to the neurological deterioration. I believe at this point you can safely say it’s both neurologial and autoimmune. 🙂 Cheers, Julie

    • Julia on July 17, 2013 at 12:28 am

      It is a neurological disease (not a mental or psychological one, however) because research has shown there is a degeneration of hypocretin-producing neurons in the brain of a narcoleptic person relative to the brain of healthy individual. Hypocretin is a neuropeptide that helps controls wakefulness and appetite.

      Although studies have led researchers to believe that narcolepsy may be autoimmune, this theory has NOT been proven to be correct as narcolepsy doesn’t meet all of the criteria for an autoimmune disease. For example, autoimmune diseases trigger the production of particular autoantibodies or cross-reactive T cells, so for narcolepsy to be autoimmune, an autoantibody would have to be identified. No specific hypocretin autoantibody or T cell has been found; thus, narcolepsy cannot be classified as an autoimmune disease at this point in time.

      In short, narcolepsy will always be considered a neurological disease, but whether or not it is also an autoimmune disease has yet to be elucidated. I hope this helps!

      -Julia

      • julie on July 21, 2013 at 4:49 am

        Thank you so much for this awesome explaination, Julia!

  1188. Donna on July 12, 2013 at 2:30 pm

    Hi, Julie!
    Love all the work you do. I had the extreme pleasure of being filmed the day before when the producers were getting an “average” patient’s perspective. They mentioned they filmed Dr. Thorpy, Director, at Montefiore Medical Center’s, Sleep-Wake Disorder Clinic earlier on Monday before coming down to NJ to listen to me babble. And they mentioned they were filming someone the next day. I asked them, “Do you know Julie Flyglare? She’s an well-known Narcolepsy Advocate and excellent writer with her own book and blog. You should talk to her.” and they then told me, that it was you, they were filming the next day.

    Well, let me tell you, I, just an average bear (especially in the mornings), but somehow must be famous by association being wedged between Dr. Thorpy, whom I respect greatly, and yourself, whom inspires me. Had lots of fun myself and hope I make some sort of contribution. Great pic as well. Honored to be included. Sincerely!

    • julie on July 12, 2013 at 3:28 pm

      Hi Donna!
      Thank you so much for participating in the narcolepsy program too! The producer was telling me how great you did in your interview so I was feeling a bit more nervous than usual.

      Thank YOU for speaking out about your experience so that others can recognize their symptoms and get treatment! I’m just an average bear too, especially in the late evenings. 😉

      Looking forward to seeing the final show!
      From one advocate to another,
      Julie

  1189. Ian on July 12, 2013 at 8:12 pm

    The infographic is great – I wasn’t aware that the fluttering eyelid thing was common for cataplexy (not that I get to talk to many other people with cataplexy). One thing that helped me out (with the getting diagnosed) is to find out that cataplexy isn’t always a total fall on the floor thing (sometimes its partial). One video at my sleep doctors office went a long way towards my acceptance of my condition.

    • julie on July 12, 2013 at 8:26 pm

      Hi Ian, I”m so glad that you like the infographic. Yes, partial cataplexy can be any of those smaller things listed in yellow – fluttering eyelids, slackened jaw, knee buckling, etc. I’m so glad you are on your way towards acceptance. You are overcoming adversity and I’m cheering for you! Big smiles, Julie

      • Ian on July 13, 2013 at 9:54 pm

        I don’t know if this will help other people with cataplexy but I took tumbling & gymnastics in college and I’ve found that when I’m collapsing I have a very short window to adjust my position. I’ve wondered if something like stunt-person training on mats could help others with cataplexy avoid some injuries. I’ve fallen due to cataplexy hundreds of times and avoided major injuries. Paying a lot of attention to surroundings helps too. Btw when you are already down is a great time to get in that laugh. I make it a practice to let coworkers and people i spend much times with know so they can take appropriate action – make sure i can breath, etc. Attempt at big smile back, Ian

        • julie on July 15, 2013 at 2:06 am

          That’s a really interesting idea, Ian! I like it.

  1190. Ian on July 12, 2013 at 8:24 pm

    About the “can’t” thing. I struggled with that one for quite a while. Can’t is debilitating. What finally pulled me out of that pit was realizing that there is a difference between can’t and “that’s probably dangerous so lets skip it unless its an emergency or I have people I can trust present spotting me”. It’s not that I can’t swim or can’t drive or can’t skydive (I’ve never actually tried that last one) or can’t ride a motorcycle. Some of those activities having varying levels of risk that are increased with narcolepsy and I’m making a personal choice not to engage in the activity because of the risks involved. I could still drive a car in an emergency even though I stopped driving over the risk. Making a choice is way different than can’t. I do miss swimming but with cataplexy I’m not willing to try it without a lifeguard that I well trust with my life and trust to pay attention.

    • julie on July 12, 2013 at 8:28 pm

      This is great perspective, Ian. I’m so sorry to hear your cataplexy presents challenges and takes activities away at times. I find that it really depends on the day and how my cataplexy is at that time. Recently I went water-skiing – which is something I NEVER imagined I would be able to do with cataplexy. It was amazing – yet I chose that time carefully. I couldn’t have gone the day before because my cataplexy was much worse. Hang in there and keep your great perspective – it’s inspiring! Julie

      • Ian on July 13, 2013 at 10:21 pm

        Water skiing – wow! There is a balancing act between risk, fear, other peoples fear, and having a life. Some activies make sense and some are really bad ideas. I realized after the fact that for a group downtown segway tour i could have reasonably done the in the parking lot practice but with acutomatic behavior & such the downtown tour in and around traffic beyond levels of risk I’m willing to take. Next time I think I’ll try the parts I can do (without undue risk to myself and others as observe forthe rest). I can imagine water skiing (assuming trained people along to fish me out). I spent years not getting what my wife meant about it not being safe to take the kids to the pool until she had to hold my head above water for 4-5 minutes. I got excited playing with the kids and had toral cataplexy attack. that was one of more terrifying ones. I realized then that if I wasn’t careful, I could die. There are other activities that are fun and safer – earlier this year I started playing disc golf with my co-workers. Fun and safe at the same time. Ian

  1191. Lisa on July 12, 2013 at 9:20 pm

    Perfect representation to inform the public. Crucial details, excellent graphics, and basic language… thanks to you, Julie, and your graphic designer, Anthony. Will share this over and over!

    • julie on July 12, 2013 at 9:23 pm

      Thank you so much, Lisa! This positive feedback means the world to me. Thanks for spreading the word! 🙂

  1192. Tony on July 13, 2013 at 2:39 am

    Julie –

    Thanks! Love the Infographic but am so graphically-challenged I cannot get the whole thing to print out — I keep getting just the first page. Any suggestions?

    Appreciate all you are doing!

    Tony

  1193. […] is being outcast at school and within the community. Her daily life consists of numerous and severe Cataplexy episodes, horrific Hypnagogic Hallucinations, and on top of it all a school system that singles her […]

  1194. Rita Rudloff on July 13, 2013 at 4:44 pm

    Julie: Very simple and informative. Since I retired, I have gotten off the meds and am having more cataplexy episodes I have to explain. By sharing this, it should help a lot of my family and friends understand what is happening with me. Thanks.

    • julie on July 13, 2013 at 7:17 pm

      Hi Rita, I’m so sorry to hear your cataplexy has been worse lately. I’m glad the infographic will help explain this to your loved ones. Also, my memoir may be helpful for them to read. All my best, Julie

  1195. Angie on July 14, 2013 at 12:46 pm

    Thank you for writing this poem and sharing it! Great job! Good luck with everything 🙂 Angie (I have narcolepsy also). We will get through this!

    • julie on July 14, 2013 at 1:33 pm

      Thanks for your encouraging comment, Angie!

  1196. Laura on July 17, 2013 at 12:22 am

    Julie, this is excellent! Congratulations!

    • julie on July 21, 2013 at 12:23 am

      Thank you so much, Laura!

  1197. The Making of the Narcolepsy Infographic on July 19, 2013 at 4:46 pm

    […] julie on July 19, 2013 In just one week, over 20,000 people have viewed the narcolepsy infographic! Here’s how my dream became a […]

  1198. Narcolepsy Infographic: What Is Narcolepsy? on July 19, 2013 at 5:22 pm

    […] Thank you to my amazing graphic designer, Anthony Nesossis.  Thank you to Alex Withrow for his pro video production!  Read about the making of the infographic here. […]

  1199. sara gorman on July 20, 2013 at 1:19 pm

    How cool!! This infographic is amazing!

    • julie on July 21, 2013 at 12:22 am

      Thank you so much, Sara! Your support means so much to me. Hope you are feeling good these days!

  1200. Alex Withrow on July 20, 2013 at 5:56 pm

    This is really great. I love seeing the evolution of how artistic and creative things come to be. Thanks so much for taking the time to write this up!

    • julie on July 21, 2013 at 12:22 am

      Thank you, Alex! I really enjoyed writing this post.

  1201. Meeting My Hero, Dr. Oliver Sacks on July 20, 2013 at 11:37 pm

    […] This week, I had the opportunity to attend a book event with Dr. Oliver Sacks at Sixth & I in Washington, DC. Dr. Sacks discussed his recent book, Hallucinations – which includes a chapter on narcolepsy’s hypnagogic hallucinations.  […]

  1202. Gail Pean on July 21, 2013 at 12:11 am

    My pleasure Julie. What a fascinating author and inspiration to everyone interested in the brain and how we think, dream, hallucinate. behave and why.
    A few of my favorite quotes from Dr. Sacks and I may be paraphrasing are:
    “Writing is better than morphine”
    “The brain can create anything including god.”
    “Consciousness is the greatest form of brain activity”
    “A beautiful hypothesis can be slain by a fact.”

    • julie on July 21, 2013 at 12:22 am

      Thank you so much, Gail!

  1203. […] Watch Video #18: Unveiling My Narcolepsy InfographicWatch Video #17: Narcolepsy & ExerciseWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* Cancel reply […]

  1204. […] Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch […]

  1205. […] #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: […]

  1206. […] #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: […]

  1207. Meeting My Hero, Dr. Oliver Sacks on July 21, 2013 at 12:26 am

    […] you to my amazing friend Gail for inviting me to this event. Meeting Dr. Sacks was a surreal moment I will cherish forever. […]

  1208. Susan Burns on July 21, 2013 at 3:00 am

    That is fantastic, Julie! Colorful, informative, and great depiction and description of cataplexy, which is so hard to explain. It covers all the bases and makes narcolepsy understandable. Great job!

    • julie on July 21, 2013 at 4:42 am

      Thank you so much, Susan! I’m so glad you like the infographic. 🙂

  1209. […] Video #19: Riding the Waves of Narcolepsy – Waterskiing with CataplexyWatch Video #18: Unveiling my Narcolepsy InfographicWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA […]

  1210. […] Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: […]

  1211. […] and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: […]

  1212. […] Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  1213. […] Watch Video #19: Riding the Waves of Narcolepsy – Waterskiing with CataplexyWatch Video #18: Unveiling my Narcolepsy InfographicWatch Video #17: Excercise and NarcolepsyWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  1214. […] Video #18: Unveiling my Narcolepsy InfographicWatch Video #17: Excercise and NarcolepsyWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with […]

  1215. […] #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: […]

  1216. […] Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  1217. […] Watch Video #19: Riding the Waves of Narcolepsy – Waterskiing with CataplexyWatch Video #18: Unveiling my Narcolepsy InfographicWatch Video #17: Excercise and NarcolepsyWatch Video #16: Debunking the Narcolepsy MythWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  1218. […] Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and […]

  1219. […] and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle […]

  1220. […] Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  1221. Tips for Students with Narcolepsy Video on July 22, 2013 at 2:46 pm

    […] Watch Video #19: Riding the Waves of Narcolepsy – Waterskiing with CataplexyWatch Video #18: Unveiling my Narcolepsy InfographicWatch Video #17: Exercise and NarcolepsyWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  1222. Tips for Students with Narcolepsy Video on July 22, 2013 at 2:46 pm

    […] InfographicWatch Video #17: Exercise and NarcolepsyWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch […]

  1223. Tips for Students with Narcolepsy Video on July 22, 2013 at 2:46 pm

    […] Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch […]

  1224. School Accommodations with Narcolepsy Video on July 22, 2013 at 2:47 pm

    […] Watch Video #19: Riding the Waves of Narcolepsy – Waterskiing with CataplexyWatch Video #18: Unveiling my Narcolepsy InfographicWatch Video #17: Exercise and NarcolepsyWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  /* […]

  1225. School Accommodations with Narcolepsy Video on July 22, 2013 at 2:47 pm

    […] InfographicWatch Video #17: Exercise and NarcolepsyWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch video #12: National Sleep Walk 2013Watch […]

  1226. School Accommodations with Narcolepsy Video on July 22, 2013 at 2:47 pm

    […] and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle […]

  1227. School Accommodations with Narcolepsy Video on July 22, 2013 at 2:48 pm

    […] Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  1228. Narcolepsy Infographic in School Presentation on July 23, 2013 at 2:12 pm

    […] friend and fellow person with narcolepsy, Jennifer recently reached out to see if she could use my infographic as part of a narcolepsy presentation to her anatomy class. I was so honored and excited for […]

  1229. Fun For The Brain on July 23, 2013 at 4:39 pm

    […] Things I Love: Fun Facts about Sleep & the Brain – Julie Flygare […]

  1230. Alex Withrow on July 24, 2013 at 3:47 pm

    Love this video. Congrats for never letting your narcolepsy keep you down!

    • julie on July 24, 2013 at 4:36 pm

      Thank you so much for your support, Alex!

  1231. NARCOLEPSY: NOT ALONE Gallery & Map on July 24, 2013 at 8:38 pm

    […] What is NARCOLEPSY: NOT ALONE? Learn more. […]

  1232. NARCOLEPSY: NOT ALONE Campaign Launch on July 24, 2013 at 8:44 pm

    […] Lost and alone. We’ve all been there. Today, I’m launching the NARCOLEPSY: NOT ALONE awareness campaign – to prove that narcolepsy is REAL and that we are NOT ALONE. People with narcolepsy AND supporters are invited to submit photos for the campaign GALLERY & MAP.  […]

  1233. Carrie-Ann on July 25, 2013 at 2:01 pm

    I think this is a great idea Julie!! Thank you so much for doing this!!

    I was thinking of doing something similar to that of what they had on the “L word”, show with either a map, or something for the pen pals ect

    Good job! 🙂 i will send mine in too!

    • julie on July 25, 2013 at 4:57 pm

      Thank you so much, Carrie-Ann! Can’t wait to see your photo and to put the Canadian flag on the map! Thanks for your support. 🙂

  1234. laura j. evert on July 25, 2013 at 4:26 pm

    really amazing idea, julie! oxx

    • julie on July 25, 2013 at 4:57 pm

      Thank you, Laura. Once I got the idea in my head, I couldn’t get it out. So exciting to watch it become a reality!

  1235. Denise Finfrock on July 26, 2013 at 12:23 am

    Cool idea. Gotta get my sign done so I can get on the map. 😉

    • julie on July 26, 2013 at 3:33 am

      Thank you, Denise! Can’t wait to see your photo and add you to the map!

  1236. Makky's Mom on July 26, 2013 at 1:19 am

    Makenna is going to send a picture too. Go Canada!

    • julie on July 26, 2013 at 3:32 am

      Wonderful! Thank you, Makky’s Mom!

  1237. […] REM Runner’s Note: I met Michelle at my first NN Conference five years ago and we’ve remained dear friends ever since. In this post, Michelle describes participating in the NARCOLEPSY: NOT ALONE campaign. […]

  1238. […] DetailsPhoto Gallery & Map […]

  1239. Moving… Be Back Soon! on July 26, 2013 at 5:00 pm

    […] the transition from East Coast to West Coast – I will keep up with the NARCOLEPSY: NOT ALONE campaign but may not be as “in touch” as usual. Once settled, I plan to continue my […]

  1240. Jo Pop on July 26, 2013 at 5:44 pm

    Good luck and have a safe trip!

    • julie on July 26, 2013 at 5:44 pm

      Thank you!

  1241. Laura on July 26, 2013 at 5:51 pm

    Julie! Congratulations! I grew up in Los Angeles, went back for grad school at UCLA, and just generally love the city. I am there often to visit family, so this means we will definitely get to meet in person very soon! I’m thrilled! Good luck with the move, and I will see you soon. 🙂

    • julie on July 26, 2013 at 6:03 pm

      Thank you, Laura! I’m so glad to hear you love LA and look forward to crossing paths soon. 🙂

  1242. Julie Ann Funk on July 26, 2013 at 6:07 pm

    Congratulations and best of luck for a safe, smooth, and low-stress move! I’m so happy that you and Alex are taking this next step, and am excited to see what new opportunities this will offer to you both! Lots of love and hugs! <3

  1243. Author Interview with Julie Flygare on July 26, 2013 at 6:24 pm

    […] I’m so glad you like my cover! It’s actually a really great story – I wrote about it here: https://julieflygare.com/unveiling-wide-awake-dreamings-book-cover/ […]

  1244. Leslie on July 26, 2013 at 8:28 pm

    Just sent mine in! With the help of one of my foster kittens. 🙂

    • julie on July 26, 2013 at 9:16 pm

      It’s a great photo! Can’t wait to share. Thank you, Leslie and adorable foster kitten!

  1245. Alex Withrow on July 26, 2013 at 9:24 pm

    I’m so glad you’re going on this journey with me, sweetie. I can think of no one better to take over the City of Angels with. We’re gonna kill it 😉

  1246. Mary Ann Poladian on July 26, 2013 at 10:07 pm

    Julie,
    Welcome to So Cal. Come see me in Orange County if you get the chance!
    Best of luck with the move!

    • julie on July 26, 2013 at 10:28 pm

      Thank you, Mary Ann! I’d love to visit Orange County. 🙂

  1247. Geraldine on July 26, 2013 at 10:27 pm

    Congratulations! My best wishes for this new step for you guys!
    Have a safe trip! I’ll be looking forward for your news 🙂

    • julie on July 26, 2013 at 10:29 pm

      Thank you so much, Geraldine! I’m sure to have some fun new adventures to report back from SoCal.

  1248. Mark Norton on July 27, 2013 at 5:36 am

    Hi, I just found you when I googled “how to live with narcolepsy”. I was just diagnosed with narcolepsy without cataplexy in March. I watched most of your videos and just wanted to say thank you. I didn’t know what it was until my diagnoses. It is difficult to explain to others. My father is in the nursing home about a four hour drive away. Last time I went to see him I think I fell asleep 15 times while driving. I haven’t been back since then, I’m not sure he understands. I’m doing better now, taking 125mg nuvigil. Anyway, thanks you are doing a good and needed thing.

  1249. Sarah on July 27, 2013 at 8:44 am

    I shall be sending mine soon. Love the idea 🙂
    I havd narcolepsy + cataplexy since i was 11 and im 23 now n only just started understanding it fully 🙂 xx

    • julie on July 28, 2013 at 11:11 am

      Hi Sarah, Thank you so much for your comment. I’m so sorry to hear you’ve had narcolepsy for so long, but I’m glad to hear you are understanding it better now. Look forward to seeing your photo for the awareness campaign! 🙂

  1250. Tania on July 27, 2013 at 11:03 am

    THIS is an AWESOME idea. I will have to put my pic up (Narcolepsy not alone) . How exciting . Narcolepsy around the world – Dont forget to put NEWZEALAND on the map LOL

    • julie on July 28, 2013 at 11:07 am

      Thank you, Tanya. Look forward to seeing your photo and putting New Zealand’s flag on the map!

  1251. sara gorman on July 27, 2013 at 1:18 pm

    Wow! Congrats on the big move! Enjoy the sunshine and we’ll look forward to hearing from you from the west coast!

  1252. Jill on July 27, 2013 at 4:56 pm

    Hi Julie! I’m just a few hours north of LA. Hopefully our paths will cross soon! Visit the Central Coast when you can! You’ll love it! If you need a guide, look me up. I’d be thrilled to show you and Alex around. Bring Leo too if you want. 😉

  1253. TheDreamer on July 27, 2013 at 7:11 pm

    Best wishes on the move, hope to hear all about it….

    Actually, relocating as a person with Narcolepsy has been on my mind lately… wonder if this means DC area is off my list 🙂

    While moving has been a recurring dream. ’cause I didn’t start this journey of getting diagnosed, and learning to live again… until after I bought this home. OTOH, I also hate moving, and had some bad ones, so those dreams can also be terrifying.

    And, now if I had to, there’s lots of extra things to clutter up my mind.

    Something about the fact that I relocated to my first job in 1990, then relocated to my second job in 1998, and then relocated for to my third/current job in 2006….

  1254. Liz on July 28, 2013 at 1:54 am

    Julie,
    My daughter and I are thrilled to hear about your move. We live just south of LA, and look forward to having you out here! My daughter is around your age, and was recently diagnosed. We are inspired by your writings and your life. Good luck with your move!
    Liz

  1255. Irene on July 28, 2013 at 3:18 pm

    Oh cool! I’m working on mine right now! And I’m talking one with my puppy/service dog to-be <3

  1256. Molly K on July 28, 2013 at 7:20 pm

    I had H1N1 n March 2010 and have had sleep issues ever since. I struggle with insomnia, daytime sleepiness which at times is impossible for me to resist sleep, and frequent sleep paralysis. I have gained weight and have almost no energy. If I get woken up suddenly I am usually confused. I used to be active and enjoyed going to the gym 3-4 times a week. I don’t know how to begin getting healthy again. This article has at the very least given me something to go off of.

    • julie on July 29, 2013 at 6:35 pm

      Hi Molly, Im so sorry to hear you’ve struggled with these issues. I hope you can find answers soon – you deserve to feel better. I’m glad this article can help. Hang in there!

  1257. Brandy Martin on July 29, 2013 at 1:34 am

    My daughter and I both have it. I just happened to find your book when I first found out. I wasn’t even looking for anything Narcolepsy related. You have made a big difference in my life.

    • julie on July 30, 2013 at 1:25 pm

      Hi Brandy,
      I’m so sorry to hear that both you and your daughter have narcolepsy. I’m glad you found my book and website. Thank you for your kind words.

  1258. María de la Lastra on July 29, 2013 at 11:25 am

    Thank you Julie for all you are doing!
    Greetings from Spain,
    María.

    • julie on July 30, 2013 at 1:09 pm

      Thank you, Maria, for supporting the campaign from Spain!

  1259. Kathy on July 29, 2013 at 4:10 pm

    Greetings from NE Ohio. Best of luck to you and Alex on this move. What you are doing for Narcolepsy is awesome. You never cease to amaze me with the ideas you come up with. I know your star will continue to shine brightly. You go Girl!!!

    • julie on July 29, 2013 at 6:32 pm

      Thank you so much, Kathy! Your support means so much to me.

  1260. Chris Sandoval on July 29, 2013 at 5:22 pm

    Those are some of my favorites!
    I feel compelled to share my rock of 2013…guaranteed to knock me upside the head and bring me back to me every single time.

    “To be beautiful means to be yourself. You don’t need to be accepted by others. You need to accept yourself.” -Thick Nhat Hanh

    • julie on August 27, 2013 at 2:31 am

      Awesome quote, Chris. Thank you so much for sharing!

  1261. Lori on July 29, 2013 at 9:21 pm

    Making my sign & anxious to put Arkansas on the map!

    • julie on July 30, 2013 at 1:26 pm

      Hi Lori!
      Looking forward to seeing your sign and putting Arkansas on the map!

  1262. Arnold Gendelman on July 30, 2013 at 5:54 am

    Julie you ARE our champion —and that beautiful smile tells it all, because now
    YOU MAKE ME SMILE—–
    Your new epiphany will make PWN’s Allies-Alone-Together World Wide.
    Get ready–this one is BIG—–

    Arnold

    • julie on July 30, 2013 at 1:11 pm

      Arnold – I’m so glad you are excited about the campaign! I am thrilled by the response so far. Looking forward to seeing more smiling faces from around the world! Big smiles and many thanks, Julie

  1263. BARBARA HOPKINS on July 30, 2013 at 4:54 pm

    JULIE,

    BEING DIAGNOSED AT 36,WAS VERY HARD FOR ME,AND MY 3 KIDS. IN THE END,I FOUGHT HARD BUT DID LOSE THE BATTLE. AS WE ALL, KNOW IT DOES END UP IN CONTROL. I HAD NARCOLEPSY FOR OVER 11YRS.,BEFORE EVER MEETING ANOTHER PERSON LIKE ME. I GOT TO GO TO MY ONLY CONFERENCE IN FLORIDA. I HAD FELT SO ALONE FOR SO LONG,BUT BEING AT THAT CONFERENCE,LITERALLY CHANGED MY LIFE,CHANGED MY HEART,MY OUT LOOK,MY ATTITUDE,MY WORLD AS IT NOW EXISTS. YES,I FEEL ALONE AT TIMES,LIVING IN A SMALL[ONE HORSE] TOWN],WHERE PEOPLE MAKE ME FEEL LIKE A LEPAR,BUT WHEN THAT HAPPENS I JUST GET ON MY COMPUTER AND FIND ONE OF MY FAVORITE NARCOLEPSY WEBSITES,AND I REMEMBER I AM NOT ALONE! NONE OF US ARE ALONE! WHAT YOU HAVE DONE IS A FANTASTIC THING FOR ALL OF US. AND,I WOULD LIKE TO THANK YOU FOR COMING UP WITH THIS IDEA,IT HAS BEEN A REAL COMFORT TO ME ON SOME PRETTY BAD DAYS. THANK YOU FROM THE BOTTOM OF MY HEART…..YOU HAVE HELPED SO MANY,IN WAYS YOU JUST WOULD NOT BELIEVE.INCLUDING MYSELF.SO, AGAIN I SAY THANK YOU….. SINCERELY,BARBARA HOPKINS

    • julie on July 31, 2013 at 7:26 pm

      Thank you for your kind comment, Barbara. I’m so sorry to hear you have been living with narcolepsy too. I’m so glad you know you are not alone. Thank you for supporting the campaign. It brings so much joy to my heart. Many thanks, Julie

  1264. Allison on August 1, 2013 at 5:39 pm

    I’ve had sleep paralysis since college. I’ve been fortunate that none of mine are frightening, or at least I’ve had them so long that I no longer see them as frightening. I hated that limbo period where I knew i wasn’t awake and wasn’t asleep.

    I once had a hallucination that included an olfactory component. I clearly smelled a man’s cologne in my room. There was no one in my room or house and the smell disappeared as I finally woke up. I won’t be sad if that never occurs again.

  1265. NARCOLEPSY: NOT ALONE 10 Days Update on August 3, 2013 at 4:47 pm

    […] days ago, I launched the NARCOLEPSY: NOT ALONE campaign with excitement and nerves. Would people join me? Today, the campaign has 130 photos […]

  1266. NARCOLEPSY: NOT ALONE 10 Days Update on August 3, 2013 at 4:47 pm

    […] Ten days ago, I launched the NARCOLEPSY: NOT ALONE campaign with excitement and nerves. Would people join me? Today, the campaign has 130 photos from 31 states and 14 countries (VIEW GALLERY & MAP)! […]

  1267. Alanna on August 4, 2013 at 12:50 am

    I totally agree with your points! Writing for yourself is so important, and the lingering, unsatisfied craving for everybody and anybody to be reading it and loving it and telling the world about it loudly, can be a motivation killer. In the end writing is best when it isn’t affected by our need for affirmation.

    • julie on August 4, 2013 at 9:35 pm

      Thank you so much for your comment, Alanna! So true that our writing is best when not thinking about what others will think. 🙂 Much appreciated, Julie

  1268. Lisa Wright on August 4, 2013 at 8:50 pm

    I thought there was nothing wrong with me but dehydration when I started just falling/passing out in my early 20’s it was not until I had a major “crash” could not stay asleep at night and could not drink enough coffee to stay awake during the day that I was finally given a sleep study and the information that I have narcolepsy and that I was born with it ____ then all those fainting and falling problems became real.

    • julie on August 4, 2013 at 9:35 pm

      Lisa, I’m so sorry to hear that you too have narcolepsy. I’m glad you finally found the right diagnosis. Sending wakefulness and big smiles your way, Julie

  1269. […] past year, we worked together to secure this tremendous opportunity with FDA. The September 24th meeting gives patients the […]

  1270. Lloyd on August 5, 2013 at 1:07 pm

    Hi Julie. Will flumazenil, a drug showing hope for those with Narcolepsy without Cataplexy and those with Idiopathic Hypersomnia be on the agenda? Lloyd

    • julie on August 5, 2013 at 2:10 pm

      Hi Lloyd,
      Thank you for your great question. The focus of the meeting will be on helping FDA understand the variety of narcolepsy symptoms, various disease states, impact on quality of life and patient experience with current treatments – so that when a drug like flumazenil enters FDA approval process, FDA better understands what matters most for patients for clinical end points, etc. This is a unique opportunity to educate FDA on patient experience and with great participation from folks with N+C and N-C, our goals will be furthered. Thanks again, Julie

  1271. noddyboddy on August 5, 2013 at 8:02 pm

    I wish there would be research on cognitive dysfunction and a recognition that narcolepsy has more symptoms than just the classic tetrad. I lose attention, can’t remember things, can’t concentrate, get confused and disoriented before the descending spiral results in a sleep attack. This makes it extremely difficult to learn anything — so I am constantly frustrated with the every changing facets of technology and can’t keep my skills up to date because I can’t learn fast enough. I forget even commonly used details and have to look them up in the manual again. I’ve had narcolepsy for 37 years and can no longer take stimulants. New approach, please!

  1272. Nancy on August 5, 2013 at 10:35 pm

    Hi! It’s going great! I have a question though. The other day I was looking at the pictures and I was able to “like” them and comment on them. Which means it must have been through FB but now I can’t figure out how to see the gallery through FB…..can you tell me how?

  1273. cheryl on August 6, 2013 at 6:08 pm

    The focus should be on replacement of what’s missing in our brains (hyporetin-1/orexin-a) NOT more pills treating symptoms from not having it!!
    Hcrt/Orx is easily made & readily available from lots of Neuropeptide Company’s all over the world. And technically has gone through two clinical trails on humans. That WE the taxpayer have doled out. #1: Through intranasal therapy (only 8 people) SLEEPMEDICINE Vol12 Issue10 pages 941-946 Dec 2011. (also known as )ClinicalTrials ID NCT00484757.
    #2: Used on dozens of healthy U.S. Troops by D.A.R.P.A. 2007 trying to keep them awake for 2 weeks straight. Good luck finding results (try WIRED mag.
    “Snorting Sleep”) The question is: Which Big Pharma bought the rights from
    D.A.R.P.A. for this therapy and then can sit on this Orexin-A therapy for as long as they like! Who makes the most billions selling us symptom pills?

  1274. Allison on August 6, 2013 at 6:15 pm

    I plan on being there. I submitted my answers to be on the panel.

  1275. Angela on August 6, 2013 at 10:31 pm

    I haven’t decided about sending a picture BUT I do love what you are doing. It’s awesome!!! I am 35 now, was finally diagnosed when I was 32, but I have had the symptons as far back as I can remember, even before Kindergarten. No one ever believed me. No one ever listened. Everyone always downed me and now that I have a diagnosis people still don’t believe me because they now say that if I was as bad as I say and the doctors say then there is no way I could have accomplished all that I have in life. So I am not believeable when I don’t do enough and now the same that wasn’t enough is too much for me to be believeable. I can’t win for losing.

    • julie on August 15, 2013 at 8:16 pm

      Hi Angela,
      Thank you for your comment. I’m so sorry to hear that you’ve had narcolepsy as long as you can remember and that you were finally diagnosed at age 32. It breaks my heart to hear this. I’ve dedicated my life to raising awareness about narcolepsy so that children in the future do not go undiagnosed for so long. I know what it takes to overcome the invisible adversity of narcolepsy each day and am so proud of you for accomplishing so much in life. You are a role model to others. Hang in there!
      All my very best,
      Julie

  1276. Kris on August 7, 2013 at 7:24 am

    My diagnosis took 15 years. Things my doctor said to me: “I don’t know anything about narcolepsy but I’m pretty sure you don’t have it.” and “We’re all tired these days. We live busy lives.” and “I’d rather have narcolepsy than cancer.” Another doctor: “Let’s do another sleep study and see if you still have narcolepsy.” (That one cost me $700 out of pocket). Doctors in my area are still in the dark on narcolepsy and it’s getting real old. They won’t listen when I try to educate them. They tell me to double my stimulants and work full time. They won’t excuse me from jury duty. It’s so hard to keep a positive attitude after all these years (30 years since first symptoms).

  1277. A.Marks on August 7, 2013 at 6:59 pm

    Thank you for making this happen. I look at this a few times a day because it makes me feel so much better!!!!

    • julie on August 8, 2013 at 5:22 pm

      You’re so welcome! I look through the photos often too. Makes my day! 🙂

    • julie on August 15, 2013 at 8:14 pm

      I’m so glad! Thank you, A.Marks!

  1278. Carrie-Ann Burns on August 8, 2013 at 5:03 pm

    I think it would definitely be amazing if you could count how many submissions you got on each flag (if at all possible) too, so others know that they are not the only one from their country if they have submitted! I would love to know how many Canadians submit to you also!

    • julie on August 8, 2013 at 5:23 pm

      Definitely! Great suggestion, I will add the count next update. 🙂 Thanks again, Carrie-Ann!!

  1279. Chelsea on August 10, 2013 at 2:42 pm

    I can’t be there in person, but will partocipate via web/phone etc. This is an amazing opportunity!! How many people do you know that are ill and have had a sit down with the FDA to tell them how they can help treat their illness…? I don’t know anyone! Thank you Julie for your efforts, your voice carries that of thousands of other PWN.

  1280. Gina on August 10, 2013 at 7:49 pm

    This is such a great idea! Thank you.
    Its become a big narcoleptic family tree. <3
    Thank you!

    • julie on August 10, 2013 at 7:51 pm

      Thank you, Gina! I love your description – our “big narcoleptic family tree!” 🙂

  1281. […] Runner’s Note: “What does the NARCOLEPSY: NOT ALONE campaign mean to you?” I’m inviting participants to write guest posts about their […]

  1282. […] See more photosJoin the campaign […]

  1283. Morgan on August 12, 2013 at 4:46 am

    Hey I read your post and in a friendly sort of way just wanted to write and encourage you on your journey of dealing with Narcolepsy. I’m 28 and also live with Narcolepsy and I certainly haven’t managed to achieve what you have with your career. You should be very proud of the fact that you can get so much done with a condition so difficult. I also know what you mean about feeling a little short-changed about your twenties. You spend all your childhood and teen-age years imagining the freedom and possibility of your twenties and then you succumb to something that gives you an earlier bed-time than you had as a kid! Anyway it’s great that you did this campaign for awareness. Keep it up I say.
    All the best,
    Morgan

    • julie on August 12, 2013 at 11:55 pm

      Hi Morgan,
      Thank you so much for this kind comment. I will be sure to pass this along to my guest blogger, Racheal. Your encouragement and understanding of Racheal’s journey will surely brighten her day!
      Thanks again, Julie

  1284. Melissa Calleeuw on August 12, 2013 at 7:26 pm

    Hi Julie,
    In my country Belgium, Europe, it’s very rare to have narcolepsy and mostly we stand alone. Even my doc neurology didn’t knew what I had.
    I think it’s really admirable that you stand up for the big family of narcolepsy patients.
    I have a large amount of meds to cope and even then … I can’t go out to work, can’t drive my car anymore, taking care of my 2 boys is a living hell … I got overweight because off the meds for cataplexy and that’s why we had to decide to reduce and even stop the meds. Unfortunately the cataplexy is worse then ever …

    • julie on August 15, 2013 at 8:13 pm

      Hi Melissa,
      Thank you for your kind comment regarding the Narcolepsy: Not Alone campaign! Please consider joining us with a photo to put Belgium on the map. We want to prove that narcolepsy is international.

      I’m so sorry to hear that your symptoms of narcolepsy have been so challenging. I completely understand. You are inspiring for being a mother, I truly can’t imagine the amount of adversity you overcome daily. I’m cheering for you!
      Sending wakefulness and smiles your way,
      Julie

  1285. Racheal on August 14, 2013 at 1:41 am

    yes that was very nice to hear, thank you for encouragement!

  1286. […] Watch Video #20: Launching NARCOLEPSY: NOT ALONE campaignWatch Video #19: Riding the Waves of Narcolespy – Waterskiing Despite CataplexyWatch Video #18: Unveiling My Narcolepsy InfographicWatch Video #17: Narcolepsy & ExerciseWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: Introduction to Wide Awake and Dreaming: Author’s Interview Watch Video #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to Narcolepsy  […]

  1287. […] InfographicWatch Video #17: Narcolepsy & ExerciseWatch Video #16: Debunking the Narcolepsy MythWatch Video #15: Narcolepsy Chosen for FDA InitiativeWatch Video #14: Tips for Students with NarcolepsyWatch Video #13: School Accommodations with […]

  1288. […] NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: The Evolution of Wide Awake and DreamingWatch Video #8: […]

  1289. […] #7: Talking about Narcolepsy during the HolidaysWatch Video #6: How Do I Handle Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: […]

  1290. […] the nail on the head and made me laugh many times over. Thank you, Random Remmie for joining the NARCOLEPSY: NOT ALONE […]

  1291. Miranda S on August 18, 2013 at 10:54 pm

    I love the random remmie series! I could be having such a terrible day with my symptoms but as soon as I read one of these comics it totally turns my day around. They help me realize that it’s okay to find humor within the struggles of N and sometimes laughter really is the best medicine! 🙂

    • julie on August 18, 2013 at 11:02 pm

      Thank you for your comment, Miranda. I agree, these cartoons help us get by and stay sane. 🙂

    • Julie Barfuss on August 20, 2013 at 5:41 am

      Thank you Miranda! 🙂 I love to hear when they brighten someone’s day. That’s better than gold to me!

  1292. Julie Barfuss on August 19, 2013 at 4:07 am

    Thank you Julie for inviting me to do this 🙂

    • julie on August 19, 2013 at 4:27 am

      You’re SO welcome, Julie B. My pleasure. Thank you for sharing!

  1293. Mike Glen on August 19, 2013 at 5:58 am

    Hi Julie,
    About 3 weeks ago I sent in my photo but have not seen it posted. Why not? Looking forward to hearing back from you.

    Mike

    • julie on August 20, 2013 at 6:16 pm

      Hi Mike, thank you for checking in about this. I’m glad we could resolve the issue and get your AMAZING photo into the gallery ASAP!

  1294. McSleepy on August 19, 2013 at 9:05 pm

    Thanks for the laughs Julie(s)! Is there a link to more of these?

  1295. TheDreamer on August 19, 2013 at 10:33 pm

    How about not every problem I come to you with whether its a new problem or a problem that I’ve had before is not now a side effect of Xyrem, just because you’re opposed to the drug.

  1296. Jackie Quinn on August 20, 2013 at 1:12 am

    Thank you so much for these drawings. They made me laugh! Are there any more? While Narcolepsy isn’t fun to have, it’s nice we can laugh about it.

  1297. Jackie Quinn on August 20, 2013 at 1:24 am

    I second what Morgan said about your career success. You are very lucky and I’m very glad for you. I was fired from 2 jobs because I couldn’t arrive on time and when I was there it was hard to function. I’m very glad you have the support you do. Good luck to you!

    • Nancy Elizabeth Contreras on August 21, 2013 at 6:20 pm

      Hi Jackie, I also was fired from two office jobs for the same reason, one I managed to keep from 2007-2011, the other only last me 3 months, but that because I totaled my car because as I tried to drive without meds while I was I between medical insurances.(bad idea)
      After 8 months of job serious job hunting I was fed up and decided to go to a trade school to better my chances in the work feild, luckily the art of hair dressing runs in my family. I just started my first job last week as an assistant at a salon, I take the bus on a 2 1/2 hour commute (since I totaled my last car), and I make the effort to arrive almost an hour early. Wish me luck! 🙂

      I really hope your career path reveals itself to you soon, keep looking forward and smiling, (I know its tough out there) but something better is out therPe waiting for you.

      Sincerelly your friend,
      Nancy

  1298. Jackie Quinn on August 20, 2013 at 1:41 am

    Julie,
    Are you still accepting photos for your “not alone” campaign?

    • julie on August 20, 2013 at 1:42 am

      Hi Jackie, Thank you for your interest in the NARCOLEPSY NOT ALONE campaign. Yes, I am still very actively accepting photos and updating the gallery and maps every few days. We are close to 300 photos! I hope you will consider joining us. Thanks again, Julie

  1299. tam kozman on August 20, 2013 at 5:53 pm

    Hi, Julie (Howdy, neighbor)! The Narcolepsy Network Support Group of San Diego County is planning to do a group shot on August 24th. It may be a very small group, but you’ll have it by the end of the month. THANK YOU for this awesome campaign! <3 Tam

    • julie on August 20, 2013 at 6:17 pm

      Thank YOU for participating in the campaign, Tam! It’s my pleasure to organize. I look forward to seeing the NN Support Group of San Diego County’s photo. This is AWESOME news! Thanks again, Julie

  1300. Franziska on August 20, 2013 at 6:42 pm

    Awesome 🙂 Glad you received my picture. It’s fantastic to see how many people join this project 🙂

  1301. Nancy Elizabeth Contreras on August 21, 2013 at 5:52 pm

    Hi Julie,  I am so pleased to see your efforts for Narcolepsy awareness! Its like a dream come true, I thought about doing it many times, but you actually did it. Thank you, I’m so proud of your accomplishments because I know that finding the time and energy to follow through can be challenging. My name is Nancy I’m 28 and I was diagnosed with Narcolepsy at 21 (talk about the best  years of my life. lol) But I feel I have a pretty normal life, I’m able to function on little medication, I take at least one nap a day, I work full time (with out napping :), I drive legally, I have a pretty normal and active social life, even my love life has been wonderful.  My journey has had it ups and downs and I feel thats because I pretty much tried to live in denial as I was determined to have a normal life and try to keep my disorder private (lets just say I chose the hard way.)

    I appreciate what your doing, I feel it reaches out to other who are also dealing with this disorder and probably have concerns a questions because I know I did and still do. This is my first time ever contacting anyone else with Narcolepsy and I want to continue doing so because, I like to consider my experience and journey a success story even though it hasn’t been easy.  I love my life, I’m in the beginning of my career as a hairstylist in Los Angeles, CA and I have wonderful friends who are sensitive a respectful, and a loving and understanding fiancé. 

    I want people to know that they don’t have to live in fear. That being happy and having a normal life with Narcolepsy is possible. 

    Thank you!
    Sincerely your friend,
    Nancy Elizabeth 

    • julie on August 21, 2013 at 6:19 pm

      Hi Nancy Elizabeth,

      Thank you so much for your comment and for sharing your story here. I’m so honored you have reached out via my blog! Your perspective is invaluable, especially for younger folks who have just been diagnosed and concerned about their future.

      I’m also excited to hear you are starting your career as a hairstylist in Los Angeles. I’m new to this area and looking for a haircut soon!! 🙂

      Sending wakefulness and gratitude your way,
      Julie

      • Nancy Elizabeth Contreras on August 21, 2013 at 6:35 pm

        Thank you for your support Julie! 
        I really feels great to be able to reach out to others. I’ve seen other blogs but I really seemed to be able to connect to yours, maybe because we’re so close in age but making this connection just gives me one more thing to be excited about.

        And yes, just let me know and I’ll be happy to cut your hair and plus it would be nice to meet you as well. I have so much respect for what you have done. 

        -Nancy

  1302. Carrie-Ann Burns on August 22, 2013 at 11:45 am

    Thank you again soooo much Julie you are amazing!!

    Also i forgot to mention, “People With Narcolepsy Pen Pals”, has an Instagram, Tumblr, YouTube, and Twitter among other things!!

    To see all of these profiles please go to http://itsmyurls.com/pwnpenpals !!!!!!!

    • julie on August 23, 2013 at 4:18 pm

      You’re so welcome, Carrie-Ann. I’m so excited to help spread the word about your fabulous group. Thank you for taking the time and energy to organize it! 🙂

  1303. Phyllis Hasian on August 23, 2013 at 3:13 pm

    Julie, thank you so much for everything you do! People with Narcolepsy Pen Pals is a great group!

    • julie on August 23, 2013 at 4:18 pm

      Thank you, Phyllis! Much appreciated.

  1304. […] Runner’s Note: Tim created this unique photo for the NARCOLEPSY: NOT ALONE campaign that really captures the unique world of narcolepsy. Read his description below. Thank […]

  1305. […] does it mean to you to participate in NARCOLEPSY: NOT ALONE? Share your campaign experience in a guest blog post – email […]

  1306. TheDreamer on August 24, 2013 at 12:46 am

    The links on how it works, examples and rules don’t work if you aren’t in the group….

    • julie on August 24, 2013 at 6:51 pm

      Thank you for letting us know! Much appreciated. 🙂

  1307. Tabitha on August 24, 2013 at 10:20 am

    I have had N with C and HH, SP and EDS as long as I can remember, and this picture is so true it made me cry. I wouldn’t wish this disorder on my worst enemy. Thank you, though, as the campaign says, it’s good to know I’m not alone.

    • julie on August 24, 2013 at 6:52 pm

      Hi Tabitha, I’m so sorry to hear you have N + C as well. I agree, this picture really captures the experience. Thank you for checking out my blog! Sending wakefulness and smiles your way, Julie

      • Michele Sampson on August 30, 2013 at 4:49 pm

        I am always trying to find information on how people with narcolepsy really feel. My son has it and he can’t even explain it so as someone without it I really appreciate the insight of Tim’s post. Though I will never understand really how narcolepsy affects people and how they feel, this helps alot.

        • Tim Kavanagh on September 1, 2013 at 6:19 pm

          Thank you so much for this response. It means a lot to me to hear that my post was helpful to you.

        • julie on September 9, 2013 at 2:27 pm

          Thank you so much, Michele. Narcolepsy can be challenging to explain, it gets a bit easier over the years, but art is a great way to express the things that are hard to explain in words. So glad you enjoyed Tim’s work as much as I did!

  1308. Nancy Elizabeth Contreras on August 25, 2013 at 4:48 pm

    Being one of 2000 you hold on to this big secret because you almost feel like you’re from another planet. You’re afraid to tell anyone because they might freak out if they find out and most of the time they do, they’ll start looking at you waiting for you to fall asleep, ask if your ok to drive and even make casual jokes.  So it just seems easier sometimes to go through this battle alone. But after seeing all the people who have replied to your blog and who also relate, its almost like finding that lost planet that I descended from and seeing that there’s other people just like me out there who have gone through the same thing and feel the same way I do. 
    After reading your blog I thought to myself, wow, its almost like she’s been watching me this whole time. It’s too surreal to believe that there is someone fighting this battle with me, that knows what I go threw everyday. I feel like there is a void in my heart that is finally beginning to mend. I know that this is only the breakthrough for Narcolepsy awareness and I look forward to see the progress of what’s to come.
    Much love Julie, and you are definitely a blessing.  Maybe like me you’ve asked God or the Universe what’s the purpose of this, why was I chosen for this? I think you are an amazing writer and you have helped bring so much light and peace of mind into so many lives already. Thank you for being strong and taking that risk for many of us. I look forward to reading more of your blogs, and catching up with the other ones I have missed. 
    Stay strong Julie and thank you for everything your are working toward. 
    Your friend and future hair stylist,
    Nancy Elizabeth

    • julie on August 26, 2013 at 5:00 am

      Nancy Elizabeth,
      Thank you SO much for your kind comment. I’m so incredibly glad that my writing has helped you feel less alone. I can’t tell you how much your comment means to me.
      Your friend,
      Julie 🙂

  1309. TheDreamer on August 25, 2013 at 7:14 pm

    So, we’re down to missing Montana, Wyoming, North Dakota, South Dakota, Nebraska, Alaska, Mississippi, and Vermont?

    Will we get all 50 states by September 1st?

    • julie on August 26, 2013 at 4:57 am

      Hi The Dreamer – we just got Nebraska so now we need Montana, Wyoming, North Dakota, South Dakota, Alaska, Mississippi and Vermont. I really hope we can get all 50 states by Sept 1st! Fingers crossed. Thank you for following & supporting the campaign. Big smiles, Julie

  1310. Stu on August 25, 2013 at 10:51 pm

    I spent MANY hours on the phone with Sharon while developing the Narcolepsy Network. She was so full of questions about the website, and I was full of questions about N (I’d only been diagnosed a short few months before).

    When she spoke about some of us that REALLY have the struggle, she spoke with an unmatched degree of passion. She changed my life more than words can say. It was during my own discovery of ‘not being alone’ that I was introduced to Sharon. It wasn’t luck…it was a real blessing.

    For being the example of compassion on how we should treat each other, we owe you endless gratitude. Thank you, Sharon. You are missed.

    • julie on August 26, 2013 at 4:55 am

      Thank you so much for this wonderful comment, Stu. I’m so glad you had a chance to learn so much from Sharon too. She is certainly missed. Thanks again, Julie

  1311. kelly on August 27, 2013 at 3:52 am

    last question..bubble wrap head to toe

    • julie on August 27, 2013 at 11:20 pm

      SO true, thank you Kelly! 🙂

  1312. Carrie-Ann Burns on August 27, 2013 at 3:46 pm

    This is so wonderful Julie, thank you so much i posted this everywhere i can to get as many people involved as possible. Thanks for continuing to be an inspiration to us all!

    • Shannon G on August 27, 2013 at 6:29 pm

      Survey done, signed up for both webinars.. Thank you Carrie for spreading the word 🙂

      • julie on August 28, 2013 at 1:41 am

        Thank you for taking the survey and signing up for the webinars, Shannon!!

    • julie on August 27, 2013 at 11:21 pm

      Thank you so much, Carrie-Ann for your support and help spreading the word. You’re the master of online communications. 🙂

  1313. scott orn on August 27, 2013 at 11:56 pm

    what a great campaign. I came across your blog via Tumblr. I run the Living With Narcolepsy support group and posted your post on our site so others would see it: http://livingwithnarcolepsy.org/forum/topics/narcolepsy-not-alone-campaign

    Great work!

    • julie on August 28, 2013 at 1:41 am

      Thank you so much, Scott! I’ve really enjoyed organizing this campaign – it’s brought more joy to my life than I ever imagined. 🙂

  1314. Can We Reach 500 Photos by Sept 1st? on August 28, 2013 at 4:00 pm

    […] have almost 400 pictures in the NARCOLEPSY: NOT ALONE gallery! I am overwhelmed and thrilled by the amazing international response. Can we reach 500 by Sept. 1, […]

  1315. […] What is NARCOLEPSY: NOT ALONE? Intro & Directions here.   […]

  1316. Carrie-Ann Burns on August 29, 2013 at 4:06 pm

    That is so wonderful! If i get one, i want to give it away to someone who could use it because i know many have asked me where i got the book but do not have extra money <3

  1317. Cindy G. on August 29, 2013 at 7:08 pm

    Just finished my survey! I finally got a photo for narcolepsy: not alone. Will get it to ASAP!

  1318. Jessica on August 30, 2013 at 3:01 am

    Wow. Cherae, you are truly inspirational. I think all women with Narcolepsy who are hesitant/worried about having children should read this. It shows that although it may be tough, it is completely possible and worth it.

  1319. rui silva on August 31, 2013 at 12:35 am

    Está um album muito bonito, pena é que a bandeira Portuguesa não aparece, pois nós por cá também temos que sofra com a doença, eu sou um deles. Obrigado

    • julie on September 9, 2013 at 2:51 pm

      Rui – Espero que possamos adicionar o da bandeira portuguesa para a campanha!

  1320. Elaine Armstrong on August 31, 2013 at 4:40 am

    Julie CONGRATULATIONS on reaching 500…WE ARE CERTAINLY NOT ALONE!

    • julie on September 9, 2013 at 2:25 pm

      Thank you, Elaine! I’m so thrilled we reached 500 too!

  1321. B.K. on September 1, 2013 at 1:39 pm

    Thank you Julie for your tireless efforts to raise Narcolepsy Awareness!!! You are an inspiration to all PWN but also to us without this complicated disorder. Your positive attitude towards your own Narcolepsy challenges are a fantastic example for all of those struggling from day to day. Together hopefully with our voices raised we will succeed to find a cure and to get those suffering the help that they need!!!
    Absolutely love the gallery!!! PWN will NEVER be ALONE as long as you keep us connected!!!

  1322. NARCOLEPSY: NOT ALONE Surpasses 500 Photo Goal!!! on September 1, 2013 at 6:05 pm

    […] few weeks ago, I set a challenging goal for the NARCOLEPSY: NOT ALONE campaign – to collect 500 photos by Sept. 1st. Today is Sept. 1st and the gallery contains 576 […]

  1323. Mindy on September 2, 2013 at 5:19 pm

    I am overjoyed to hear!

    • julie on September 9, 2013 at 2:25 pm

      Me too! Thank you for your comment, Mindy. 🙂

  1324. NARCOLEPSY: NOT ALONE Surpasses 500 Photo Goal!!! on September 4, 2013 at 5:04 am

    […] NOT ALONE campaign – to collect 500 photos by Sept. 1st. Today is Sept. 1st and the gallery contains 576 photos from 46 U.S. States and 28 countries around the […]

  1325. […] I learned about Julie’s NARCOLEPSY: NOT ALONE campaign, I realized that I had the perfect platform to help raise awareness. As a nursing […]

  1326. florence W on September 5, 2013 at 2:58 am

    I did the survey and signed up for the webinar!

    • julie on September 9, 2013 at 2:24 pm

      Thank you so much, Florence for raising your voice and supporting the FDA intiaitive.

  1327. Ada on September 5, 2013 at 1:45 pm

    So proud of you! This was great!!!!

    • julie on September 9, 2013 at 2:24 pm

      Thank you for this comment, Ada. I’m so proud of Jennifer too!

  1328. Carrie-Ann Burns on September 5, 2013 at 2:02 pm

    I am so happy to hear that your Narcolepsy: Not Alone campaign is working so successfully! 😀

    I will send in more photos once i get my old cameras memory card to work in someone elses computer ox

    • julie on September 9, 2013 at 2:23 pm

      Thank you, Carre-Ann! I’m so happy with the campaign’s response too.

  1329. cindy on September 5, 2013 at 2:18 pm

    Wow! Inspiring! Making me think very seriously about joining as an advocate.

    • julie on September 9, 2013 at 2:23 pm

      Thank you, Cindy. You are an advocate!

  1330. Susyana suwadie on September 5, 2013 at 4:37 pm

    Keep in touch with your updates Julie….thanks so much. I do hope there will be a bright future to solve narcolepsy . I really wish my son can recover. He is too young to get this trouble and he has so many dreams to be reached.
    Take care and thanks so much….

  1331. Beth K. on September 5, 2013 at 5:16 pm

    Hi Julie:
    Just want to say “WOW” to everything you do for PWN and being an amazing advoce!!! I am so excited about the photo campaign!! My daughter has had Narcolepsy with Cataplexy since she was 9 years old. It has been an incredibly challenging journey for her but we are thankful for the positive strides that are being made both in terms of medications, diagnosis, and awareness!! Our hope is for a cure to occur soon especially with the FDA being on board to help. It would be SOO WONDERFUL TO FIND A CURE and not to just treat the symptoms. In the meantime, THANK YOU THANK YOU THANK YOU FOR UNITING THOSE WHO STRUGGLE WITH THIS MEDICAL CONDITION!!!

    THEY WILL NEVER EVER BE ALONE NOW:)
    KEEP UP THE MARVELOUS WORK YOU ARE DOING AND I HOPE TO HELP ALSO. WE CAN’T GIVE UP THE FIGHT!!! THOSE WE LOVE DESERVE THE BEST LIFE POSSIBLE!!!!

    HERE’S TO BRIGHTER AND BETTER DAYS AHEAD!!!!!!

    • julie on September 9, 2013 at 2:22 pm

      Thank you for your support and encouragement, Beth. I hope for a cure soon too and I’m encouraged by the FDA’s interest as well! It’s a joy and honor to raise awareness. It’s kind comments like yours that remind me why I do what I do. 🙂

  1332. Melanie on September 6, 2013 at 1:26 am

    Very inspiring. Great job being so strong and forthcoming. I’m very proud of you.

    • julie on September 9, 2013 at 2:35 pm

      Hi Melanie, Thank you for your comment. I agree, Jennifer is so inspiring!

  1333. Holly Twedt on September 7, 2013 at 7:08 am

    Help I am being discriminated against in my job due to having narcolepsy and periodic limb movement disorder. I am being assessed for fitness for duty. Can anyone suggest ways to protect myself? They are trying to say I have cognitive impairment that is negatively impacting my ability to do my job as a social worker.
    I am considering having an attorney represent me.
    Had the perfect storm begin in September 2012 when my home was broken into. Had PTSD as a result. Unfortunately did not get any treatment for until recently. Now am having EMDR Treatment for the PTSD. Did get a home security system and they broke in before it was fully activated again in August 2013.
    I have had multiple negative responses to the medications which negatively impacted my ability to do my job. I got behind in my paperwork. I had no support from management regarding and then was told I had to be assessed for “fitness for duty.” Other concerns were reported that were incorrect. When I have tried to challenge this I have not been heard. I had a recent neuropsychological evaluation done two days after the second break in and it was not positive. Am being told I may have dementia and will have to have an MRI possible PET scan, etc. I do not feel that it was appropriate to have this evaluation done two days after the original break in. I am feeling very displaced and abused by the system I work for. I am a therapist who works with all age groups. Have been in my current job for almost 14 years. I am going to be 61 years old on November 4th. Have worked as a social worker for 30 years and have never experienced this type of treatment.
    I have been lied about, discriminated against, etc. I was the one who fought to be assessed for both periodic limb movement disorder and also for narcolepsy.
    Any ideas on what else I can do to protect myself from injustice?

    Holly Twedt

    • julie on September 9, 2013 at 2:32 pm

      Holly, I’m so sorry to hear about your current work challenges. This sounds incredibly difficult beyond belief. I wish I had recommendations for help, but this area is way out of my league. My thoughts are with you during this challenging time.

  1334. Jenn Saccone on September 7, 2013 at 8:36 pm

    That answered my question! I am SO overjoyed. Give Narcoleptics a deadline and we pulled through? Incredible.

    • julie on September 9, 2013 at 2:29 pm

      Very true, Jenn! Deadlines are key for me. 😉

  1335. Tanya on September 8, 2013 at 11:19 pm

    We did our group one yesterday in Brisbane, Australia =) was a fantastic day!!!

    • julie on September 9, 2013 at 2:29 pm

      Hi Tanya, I LOVE the photo from the Narcolepsy Support Group Australia. I will add it to the gallery in my next round of updates in the next few days. Wishing I could’ve been at your meeting in-person, it looks like a lot of fun! Big smiles, Julie

  1336. Robert Sloane on September 9, 2013 at 3:59 am

    Thank you for the awareness of your site. We have read the book by you and afew by some others and they all have deep bits of help

    • julie on September 9, 2013 at 2:28 pm

      Thank you, Robert for your support and for reading my book. Much appreciated!

  1337. […] ***UPDATE: We reached 500 by Sept 1st! Read follow-up here.*** […]

  1338. […] Video #19: Riding the Waves of Narcolepsy – Waterskiing with CataplexyWatch Video #18: Unveiling my Narcolepsy InfographicWatch Video #17: Excercise and NarcolepsyWatch Video #16: Debunking the Narcolepsy MythWatch Video […]

  1339. […] Video #13: School Accommodations with NarcolepsyWatch video #12: National Sleep Walk 2013Watch video #11: Being Your Own Health Advocate Watch Video #10: Hypnagogic Hallucinations and Sleep ParalysisWatch Video #9: Why I Wrote a Memoir: […]

  1340. […] Narcolepsy DiagnosisWatch Video #5: Communicating about CataplexyWatch Video #4: What is Cataplexy?Watch Video #3: Communicating Invisible SymptomsWatch Video #2: Excessive Daytime SleepinessWatch Video #1: Introduction to […]

  1341. Eelia on September 11, 2013 at 12:55 am

    Having and explanation to my continuous fatigue and just weird sleep/no sleep I found comfort in that for some reason…it must be the years of misdiagnosis and the attitude of never giving up ……When I got the diagnosis on 11/12 I felt like my questions finally are answered! I also have gone back over my history and feel this has been with me since my teens….I was 43 when I finally got it and not because of any of my doctors ever thinking of giving me a sleep study!! So I self refereed..my first study showed Narcolepsy but I had not been off of my medications for “CFS” and my Fibromyalgia….so once I got my new insurance from going back to work I have to change doctors….good thing too! He gave me a few different sleep studies including the wakefulness one, and the standard overnight nap one again but this time I had been off of all my medications and well he said I have never seen these results like yours…So for me having started severe symptoms in 1997 and events prior that would have been a signal to someone who knew what Narcolepsy is. I appreciate everything you are doing and well I have lived over sixteen years in agony…unfortunately I do have Fibromyalgia and that being a trash can diagnosis in the medical field is no wonder it took so long for my diagnosis! I can honestly confess my belief in the power of positive thinking!! I have even used bible verses: Phil 4:13 I can do all things through Christ who strengthens me. Even so I am having a super hard time …trying to hold it together..I was on SSDI and was finally working to get back to my career as a Medical Coder …..six months into my first long term temp job I was diagnosed with Narcolepsy….I was subsequently hired by the company I was doing the work for…I have been working full-time for them for almost a year now! I totally believe in the power of positive thinking but I find myself over doing it or unable to care for my daily activities so I just put all my energy into working…I feel like I am in a circle and I have a hard time comprehension that I am not in some sort of viscous cycle…I start to feel good I over do it by thinking I can actually do the things I want…but it’s not that easy…I know I am new to all this reality of Narcolepsy and maybe someday I will forgive myself and all of the many many medical providers I have seen through out my life….I hope I can come to that place someday

  1342. Free E-Book Weekend Sept. 14-15, 2013 on September 12, 2013 at 6:06 am

    […] the NARCOLEPSY: NOT ALONE campaign soared past our 500 photo goal, with over 725 photos in the gallery now! To celebrate, […]

  1343. Free E-Book Weekend Sept. 14-15, 2013 on September 12, 2013 at 6:06 am

    […] the NARCOLEPSY: NOT ALONE campaign soared past our 500 photo goal, with over 725 photos in the gallery now! To celebrate, download the award-winning Wide Awake and Dreaming: A Memoir of Narcolepsy […]

  1344. denise finfrock on September 12, 2013 at 1:12 pm

    yay! thanks! i’ve been wanting to get it, but i’ve been broke.

  1345. frequent faller on September 12, 2013 at 1:49 pm

    Thanks for the e-book! I read the sample, but can’t afford to splurge on the e-book or paperback. I have to own the real deal, too, of course. Maybe you can sign it for me some day.

  1346. Carrie-Ann Burns on September 16, 2013 at 1:32 pm

    Honestly Julie, you are WAY too kind, thank you for all of this on the behalf of all us PWN’s!

    • julie on September 16, 2013 at 6:46 pm

      Thank you, Carrie-Ann! I love our community and would do anything to further our mission! <3

  1347. The Dreamer on September 16, 2013 at 6:21 pm

    I vaguely remember turning 30….everything seemed to go downhill from there…going faster and faster until I overshot 42 (where I had hoped to finally get answers to what’s wrong with me…)

    Finally the later part of 43….I got my Narcolepsy diagnosis. Still don’t have all the answers…..still hoping I’ll find some more before my next birthday….

    Wonder what I should do when I turn 45 next month?

    • julie on September 16, 2013 at 6:47 pm

      Happy birthday (a little early)!! You’ve overcome a lot of adversity and I’m very proud to call you a friend and co-advocate. 🙂

  1348. Julie on September 16, 2013 at 9:40 pm

    Happy Birthday Julie, and may you have 90 more.

    Sending all good things going your way and may happiness be with you. You are doing a great job and so proud of you.

    Aunt Julie

  1349. Emily on September 16, 2013 at 11:05 pm

    Oh bummer. I just missed this!

  1350. Book Signing and Speaking at BRPT Symposium on September 17, 2013 at 7:28 am

    […] the start of my presentation, I described the NARCOLEPSY: NOT ALONE […]

  1351. Holly Twedt on September 17, 2013 at 2:29 pm

    I want to tell them that I am on FMLA due to my employer questioning if I am fit for duty due to cognitive functioning problems. Have had to see a psychiatrist and a neuropsychologist for evaluation. Failed the evaluation and now they are trying to imply I may have dementia. Now have to go thru physical tests to rule out. I am trying to comply but question what my next step will be as there is no room for discussion about the role the narcolepsy has made on my functioning due to side effects from medications, job stress, etc.

  1352. Mo caden on September 17, 2013 at 8:25 pm

    Jennifer you go girl… 🙂
    I have had a few tears again with mild Cataplexy seems to happen every time I read others stories its the emotional rush of reading all the positive things that are finally happening. I really understand that feeling of coming out. Before I kept it to myself in a way and then with Julie’s story I just thought hey what the hell we need to let people know, I too worried about it being negative on career aspects but now I find most people are really positive. Its a great feeling. It also helps with the confidence side especially with the cataplexy. I counted 20 people in your picture who now know about Narcolepsy because of you and each will talk to another so there is another 20 and on and on that’s brilliant.
    And to JF I have so much gratitude for you words are hard to find.. You rock! x

    “Dare to Be

    When a new day begins, dare to smile gratefully.

    When there is darkness, dare to be the first to shine a light.

    When there is injustice, dare to be the first to condemn it.

    When something seems difficult, dare to do it anyway.

    When life seems to beat you down, dare to fight back.

    When there seems to be no hope, dare to find some.

    When you’re feeling tired, dare to keep going.

    When times are tough, dare to be tougher.

    When love hurts you, dare to love again.

    When someone is hurting, dare to help them heal.

    When another is lost, dare to help them find the way.

    When a friend falls, dare to be the first to extend a hand.

    When you cross paths with another, dare to make them smile.

    When you feel great, dare to help someone else feel great too.

    When the day has ended, dare to feel as you’ve done your best.

    Dare to be the best you can –

    At all times, Dare to be!”
    ― Steve Maraboli, Life, the Truth, and Being Free

  1353. Patricia Higgins on September 18, 2013 at 1:13 pm

    I missed the meeting this year after attending for a few years. Thank you Mark for the post above. Interesting statistics and much to think about as I enter this next stage of my life, being a grandparent and a PWN. Education is so important.

  1354. Patricia Higgins on September 18, 2013 at 1:16 pm

    Friendships in PWN make you realize that you are not alone, it is a great message.

  1355. Julie Barfuss on September 18, 2013 at 10:42 pm

    This is heartbreaking!

  1356. Eelia on September 19, 2013 at 1:24 am

    So sad 🙁

  1357. Random Remmie Explains Narcolepsy & Sleep Cycle on September 19, 2013 at 5:12 am

    […] may remember Random Remmie from this previous post, but recently she’s became a movie star, featured in two amazing educaitonal videos. The […]

  1358. Carrie-Ann Burns on September 19, 2013 at 3:34 pm

    I love everything Julie does, and the Random Remmie is amazing!! The picture she did for your birthday was outrageously cute! And this video made me cry, i love it. Fav part is leading up to the 3:49 mark.

    • Julie Barfuss on September 19, 2013 at 8:06 pm

      Thank you so much Carrie-Ann 🙂 You are awesome!

  1359. John Hay on September 19, 2013 at 4:14 pm

    I missed the deadline for registration. What sort of webcast is it that I will not be able to monitor on the web?

  1360. Janine on September 20, 2013 at 1:15 am

    Thank you Julie. These videos are fabulous. My daughter NwC (18) is now approaching the workforce and uni. Something similar for workplace education would be so useful. There is an analogy my daughter uses for her energy you may like to incorporate somewhere; ” I feel like a half charged phone, then when I’ve done (. ? Eg washed hair. Walked to shops etc) that’s it for the the day. .
    My power bars are all used up and I need to recharge” . I use this when trying to explain her sudden sleepiness while out at dinner or visiting etc. and people seem to comprehend the impact of N a little clearer.

    Regards,
    Janine

    • Julie Barfuss on September 26, 2013 at 9:09 pm

      Hi Janine,

      I love your daughter’s analogy! She’s exactly right. And thank you for the ideas.

      If only showering and looking proper wasn’t a requirement for this world :)….even cooking, laundry, driving, etc…. 🙂

      Thank you for being an awesome mom and helping others understand your daughter. That makes me weepy!

      Julie B.

  1361. Cindy on September 20, 2013 at 3:58 pm

    I shared this to my Facebook page. I cannot believe it, but I think I may have been narcoleptic since I was a child. I always suspected I may have had it since I was a teen, but these videos made it crystal clear of me…I just know it will help kids and parents get help earlier than I did. I wasn’t diagnosed properly until 2010. Thanks Julie
    And Julie

    • Julie Barfuss on September 26, 2013 at 9:14 pm

      Cindy,

      Thank you for sharing the video, and thank you for your comment. It makes me feel less alone with every comment I’ve received. I love feeling less alone!

      Julie B.

      • Cindy on September 30, 2013 at 6:36 pm

        Julie, I know how you feel. Just by engaging conversations on Julie F. blog makes me feel less “alone”. Since I was diagnosed in 2009, I woke up from a long sleep and became a hermit! I am working toward over coming this at the present. I love your effort! Keep it up. I will as well 🙂 cindy

  1362. Julie Barfuss on September 20, 2013 at 7:21 pm

    Julie,

    Thank you so much for posting this on your blog. My computer will not let me open it and I’ve been dying to know what it said!

    Thank you again for all you do for us 🙂

  1363. The Dreamer on September 20, 2013 at 7:42 pm

    Was interesting reading some of the comments, they matched the kind of thing I thought of….though I almost never leave comments in surveys … even if it makes it a required element.

    The interim report doesn’t show it, but I’d be curious to see if shows the distribution of time to diagnosis, and correlates age and year of diagnosis.

    Because the doctor that diagnosed me with Cataplexy, didn’t know what Cataplexy was two years earlier….

  1364. Danielle on September 20, 2013 at 10:02 pm

    Thanks so much for posting some of the results. I just can’t read the whole thing. Narcolepsy has completely stolen my attention span for reading.

  1365. Kate Davies on September 21, 2013 at 6:37 am

    Thank you, thank you, thank you Julie for creating Random Remmie! She says just what I want to say to my friends and family! A fantastic visual way to explain that we don’t actually ‘sleep’, amazing, thank you sssoooooo much!

    Kate x

  1366. Kate Davies on September 21, 2013 at 2:40 pm

    Belated Happy Birthday Wishes to you Julie, I hope you have been spoilt! You deserve much happiness!

    Many many thanks for all you continue to do for the Narcoleptics of this world, I am so glad I have ‘met’ you! You have been a source of both much help to me and an inspiration to us All! I personally cannot thank you enough.

    May you make many happy memories in you thirties! xxx

  1367. Makky's Mom on September 22, 2013 at 4:10 pm

    Thank you Julie!
    The most interesting fact to emerge (in my opinion) is that a full 60% of respondents claim that the onset of symptoms was before age 18 (20% before age 10, 40% between age 11-17), yet NOT ONE SINGLE medication to treat narcolepsy is approved for use in the pediatric population! This is completely unacceptable and needs to be addressed so our young children with narcolepsy can lead a full, active and productive childhood (socially, academically, physically) that can fully prepare them for their future!
    ~ Mom to an 8 yr old daughter with severe narcolepsy and cataplexy, living with the challenges of childhood narcolepsy without an effective treatment.

  1368. Jennifer Taylor on September 23, 2013 at 5:27 pm

    I love this! I’ve had Narcolepsy for over 10 years now, and its hard to explain! This is awesome. I am sharing this to my facebook page as well. Thank you Julie, I admire you! I’ve never seen anything like this, and I follow your blog everyday. Thank you for making me feel no alone!

    Jennifer

    • Julie Barfuss on September 26, 2013 at 9:05 pm

      Jennifer,

      Thank you so much for sharing the video and for your sweet comment 🙂

      Julie B.

  1369. Liesbeth on September 23, 2013 at 5:48 pm

    I am soooo glad i found ya! 🙂

    • julie on September 30, 2013 at 4:32 pm

      Thank you for your comment, Liesbeth. I’m glad you found me too. 🙂

  1370. Shining a Spotlight on Narcolepsy at FDA on September 24, 2013 at 10:27 am

    […] launched this effort over a year ago.  Thank you to the Unite Narcolepsy team for launching the powerful survey and successful webinar series. FDA has been “wowed” by our community’s […]

  1371. Dynamo Di on September 24, 2013 at 10:43 am

    Thank you for representing us all Julie 🙂

    • julie on September 28, 2013 at 12:05 am

      You’re so welcome, Di! It was a fantastic day indeed.

  1372. Kim McCleary on September 24, 2013 at 11:02 am

    Julie — It’s been a great pleasure and honor to work with you and the whole Unite Narcolepsy team to prepare for this day! I am so impressed with the community’s response and look forward to hearing all the voices shared at today’s meeting! Thank you for all you have done to get to this point and all you continue to do on behalf of narcolepsy!

    • julie on September 28, 2013 at 12:06 am

      Thank you, Kim for leading our community to such a successful meeting at the FDA! It was a day I will never forget.

  1373. Kerry on September 24, 2013 at 11:18 am

    It is going to be a great day!!

    • julie on September 28, 2013 at 12:06 am

      Thank you for your support, Kerry! 🙂

  1374. Beth K. on September 24, 2013 at 10:11 pm

    Hi Julie:
    I just finished watching the whole web session on the FDA Patient Focused Meeting. As a parent of a child who has endured Narcolepsy for past 5 years I was moved to tears listening to all of the stories and struggles of those voices representing the Narcolepsy Patients via the meeting today. However, I am so very thankful that together we are pushing to raise awareness and understanding!! I am Hoping beyond Hope for that day when a treatment will become available which addresses not just symptoms of Narcolepsy but gets to the cause and will become a cure. So much strength and courage among all of us effected by this very misunderstood and misdiagnosed condition.

    Keep up the great work and remember as you have said, WE ARE NOT ALONE!!

    • julie on September 28, 2013 at 12:07 am

      Thank you for participating via webcast, Beth. I was moved to tears as well. A very emotional experience for all but a step in the right direction to build a brighter future for narcolepsy.

  1375. keith on September 24, 2013 at 10:39 pm

    I too just finished watching the whole web session on the FDA Patient Focused Meeting. There appears to be much confusion, dis-information and lack of information among sufferers, caregivers and professionals. Iqas disappointed that FDA spent no time on the cause(s) of Narcolepsy and Catalepsy. Nonethless, the raised awareness was terrific. I hope follow-up among the medical and pharmaceutical communities will be swift and meaningful.

    • julie on September 28, 2013 at 12:10 am

      Hi Keith, Thank you for participating via webcast. This program is really focused on gathering the *patient experience* with narcolepsy, as opposed to discussing the science or causes. To discuss the science, they will surely want to speak with the clinical and research experts. This was about learning what matters most for individuals and how narcolepsy effects our lives. I hope this helps clarify the meeting’s intentions a bit! Thanks again for all your incredible support! Your friend, Julie

  1376. Jo Poplawski on September 25, 2013 at 5:30 pm

    Hi Keith.

    The causes of narcolepsy and cataplexy was not one of the topics for the meeting because that is beyond the scope of what the FDA can do for us. They concentrated on the symptoms, living with narcolepsy and the effectiveness and issues with the current treatment issues because that is an area that they can use the data for to help evaluate future treatments and medications for approval.

    The way it was explained is that when a company presents a new drug for approval, the FDA looks to see if the drug addresses known issues with the condition.

    Other than that, it was a fantastic meeting. Even though I’ve suffered with narcolepsy for quite a while, learned a lot. The professionals there were very attentive and seemed genuinely concerned about what we had to say and in wanting to help.

    It was a good day for narcolepsy.

    • julie on September 28, 2013 at 12:11 am

      Thank you for your comment, Jo. Yes, this was quite a fantastic meeting and I too learned a lot. I’m so very proud of YOU and all our patient advocates! Sending big smiles your way, Julie

  1377. Julie Barfuss on September 26, 2013 at 9:17 pm

    Julie F,

    Thank you again for sharing this :)…AND for ALL you do for US!

    Julie B

  1378. Elizabeth on September 28, 2013 at 9:05 pm

    I cannot thank you enough for all your efforts to make this event happen. My son and I watched most of the meeting through web conferencing. He was so excited to see familiar PWN faces and wanted me to submit comments too. I told him that I would if I felt like there was ever a point that the folks in the meeting did not address, and I never found one! My son was disappointed because he wanted me to make a comment, and I was happy to have been represented by an awesome group. Thanks to everyone in attendance who made every point I would have wanted to make and many more!

    • julie on September 28, 2013 at 9:27 pm

      Thank you so much, Elizabeth! I’m so glad you and your son were well-represented. It was an amazing day!

  1379. Makky's Mom on September 29, 2013 at 12:59 am

    Thanks for sharing your experience of the day with those of us who could not attend!

    • julie on September 29, 2013 at 11:20 am

      My pleasure! Thank you for reading.

  1380. Geraldine on September 29, 2013 at 1:45 am

    Thank you so much for taking the time to write and sharing this information!

    • julie on September 29, 2013 at 11:21 am

      You’re welcome, Geraldine. 🙂

  1381. joyce hannon on September 29, 2013 at 2:25 am

    This is excellent, Julie.

    • julie on September 29, 2013 at 11:21 am

      Thank you, Joyce!

  1382. Angie on September 29, 2013 at 12:38 pm

    Thanks for sharing and for all that you do Julie! Blessings! Angie

    • julie on September 29, 2013 at 6:37 pm

      Thank you for your support, Angie!

  1383. Jill Runyen on September 29, 2013 at 3:37 pm

    First of all, thanks for all you do! Second, thanks for the summary of the FDA meeting; I haven’t seen one anywhere yet. I wasn’t able to attend or watch the webinar and was dying to know how it went.

    Can’t wait for FDA to post transcripts, video or anything else.

    Thanks again for representing our community!

    • julie on September 29, 2013 at 6:38 pm

      Thank you for reading my post, Jill. I’d hoped to get my re-cap done sooner, but the meeting was so emotional and moving, it left me speechless for a few days. 🙂 I’ll share the links to the video and transcript on my blog as soon as possible.

  1384. Michele Sampson on September 29, 2013 at 4:44 pm

    Hi Julie, Thank you for all you do it is amazing. It never ceases to amaze me as a care giver to hear how this disorder affects everyone. Always the same symptoms but always in different ways. The severity of it for some is just heart wrenching and I have to say that it was a good thing I was participating through the web because I cried through the whole thing and that would not have been a pleasant site. I am grateful that my son’s narcolepsy is not as severe as some and he can have somewhat of a normal life this is driving me and him to do more for narcolepsy awareness. Thank you again you are truely an amazing person!

    • julie on September 29, 2013 at 6:40 pm

      Thank you for your support, Michele. I cried through most of it too, and there were many sniffles and waivering voices all around me so you were in company! We are incredible people overcoming so much adversity daily. So very proud of our eloquent, well-spoken strong community. Thank you for supporting your son and all of us with narcolepsy. 🙂

  1385. Danielle on September 29, 2013 at 10:40 pm

    Thank you! I had to miss the webcast as it was 3am here in Australia and I had my first sleep study the night before: cue exhaustion.

    I can’t wait to watch when it comes out! I would have leapt to my feet in applause at that nap comment. I am yet to have any doctor tell me to nap because they haven’t yet decided my problem, but I CAN’T nap. Once asleep it always lasts at least an hour instead of the suggested 20 minutes, and I ALWAYS feel like death afterwards. It’s just not worth it!

    I’m also very pleased that the “would most like addressed” list pretty much matches what I want addressed. Good work everyone!

    • julie on October 2, 2013 at 9:06 pm

      Thank you so much for reading my post, Danielle and taking an interest in our FDA initiative all the way from Australia!! I always feel like death after my naps too – I’m going to write an upcoming post about it on my blog. Thanks again for your support, Julie

  1386. Audrey Kindred on September 30, 2013 at 12:05 am

    I really look forward to seeing more…. thanks.
    I’m really excited about you Julie. About your impact. It’s really awe inspiring. You’re like a home run hitter. The bases were loaded — with years and years of efforts and organizing in the community, for which I am very proud to have helped create — but you’ve brought it all home! Our home run hitter.
    Great respect and gratitude. And awe.

    • julie on October 2, 2013 at 9:07 pm

      Audrey – your support of my efforts means so much to me. Thank you thank you thank you. Big hugs, Julie

  1387. Amber on September 30, 2013 at 1:14 am

    As a Respiratory Therapist diagnosed with N in March 2012, I suffered through school & many years prior. I love your book & wished I could’ve made the FDA conference. Thanks to you & all you do from day to day.
    Hope to meet you someday.
    GOD Bless,
    Amber

    • julie on October 2, 2013 at 9:08 pm

      Amber – thank you for reading my book and supporting my efforts. I hope to meet you too someday!! Sending wakefulness and big smiles your way, Julie

  1388. Beth K. on September 30, 2013 at 4:16 am

    Thank you Julie and to all who attended the session and shared their stories! I too was incredibly moved, emotional, and yes still somewhat frustrated to hear of the many ways Narcolepsy can impede the most basic of daily functioning! I am a mom of a 17 year old Narcoleptic daughter who has been diagnosed since age 9. Life for us continues to be a trial and error of drug treatments which sometimes have helped greatly and other times caused very serious life threatening side effects. I know that with all of our collective effort and continued push for change that we can see this disorder one day (hopefully soon) have a cure and not just treatments!!! Together we are stronger then we realize. I am so very thankful for this online community which reaches around the world and can unite us in our struggles, joys, and continued advocacy!!! We are NEVER ALONE and we can be the change that is NEEDED!! Keep UP the AWSOME WORK and THANK YOU AGAIN JULIE FOR ALL THAT YOU DO FOR PWN!!!

    • julie on October 2, 2013 at 9:10 pm

      Beth K. Thank you for supporting your daughter’s experience with N and my mission of building a brighter future for all those with this condition. This means the world to me. I cannot even begin to express my gratitude. Thank YOU for your support, Julie

  1389. Sara Kowalczyk on September 30, 2013 at 1:45 pm

    Excellent choice of quotes to lead another outstanding summary (with great pics too!). Your ability to produce these blogs is unforgettable — especially as it appears effortless (I know better though!). I truly appreciate how you continuously use your talents to benefit the PWN community. Thank you, thank you, thank you!!!

    • julie on October 2, 2013 at 9:11 pm

      Thank you, Ms. Sara! That means so much to me coming from a great writer and editor like yourself. As you guessed, it wasn’t quite as effortless to write this as it may appear. I spent many hours writing this, as I wanted so badly to capture the energy in that room – perhaps an impossible task. SO great to see you there and looking forward to seeing you again in a few weeks!

  1390. Jennifer Taylor on September 30, 2013 at 2:24 pm

    Hi Julie,

    I just wanted to let you know ever since I found your blog about a month ago I feel like I can show other’s what Narcolepsy & Cataplexy is about. This weekend I had the courage to play horseshoes with the family and 1 friend that was over. I normally never do because of the Cataplexy. And yes, I threw a ringer, and down to the ground I went. But this time I wasn’t embarrassed and it felt good. Thank you so much for your encouragement, and support. You are truly a blessing!

    • julie on September 30, 2013 at 4:32 pm

      Thank you so much for your kind message, Jennifer. Is COURAGE contagious because your story about the horseshoes makes ME feel more brave! I’m so very thankful for your support. Sending wakefulness and big smiles, Julie

  1391. […] Heather, and her groom, Ken, made time in their wedding ceremony to capture pictures for the NARCOLEPSY: NOT ALONE campaign. They proudly halted their ceremony to surround me with love and […]

  1392. Julie Barfuss on September 30, 2013 at 4:53 pm

    Awe..tears!

  1393. Samantha Vandeberg on September 30, 2013 at 5:32 pm

    Julie Barfuss… I don’t think my eyes will dry from all the love for weeks!

  1394. Rosie dawn Williams on September 30, 2013 at 5:58 pm

    Happy birthday I really hope that you had a lot of fun and I need some advice on how to control my narcolepsy and cataplexy because I get really horrible and nasty things to my mom and get angry and I have only just gone up to the high school and I have already missed one day and I can’t risk this like in my primary school because I was not there all the time and can’t control it so can you help me send me a friend request to me on Facebook I am 10 years old !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  1395. Sara Nussel on September 30, 2013 at 6:04 pm

    Who are the folks standing with you in the pictures?

    • julie on October 2, 2013 at 9:12 pm

      Hi Sara – these are my new friends and fellow advocates standing with me in the photos including Carrie and Jennifer. 🙂 Thanks for checking out my post! -Julie

  1396. Danielle on October 1, 2013 at 10:43 pm

    I love zumba! And burlesque workout. If you can find one of those I highly recommend it. It will make anyone, of any shape, feel sexy. And thats even in a room full of sweaty people wearing gym gear!

  1397. […] scary symptoms that people with narcolepsy have. And so, we wanted at add our support to Julie’s NARCOLEPSY: NOT ALONE campaign. In this photograph, there are more than 140 people with narcolepsy from all over the UK, […]

  1398. Alex Withrow on October 2, 2013 at 9:44 pm

    Excellent post, thanks so much for the round up. And thanks for EVERYTHING you do for the sleep community 🙂

    • julie on October 3, 2013 at 1:01 am

      Thank you for your support and encouragement, Alex.

  1399. Alex Withrow on October 2, 2013 at 9:46 pm

    There’s no better person to represent the Narcolepsy community than you!

    (Also… I always loved that picture.)

    • julie on October 3, 2013 at 1:00 am

      Thank you, Alex!

  1400. Alex Withrow on October 2, 2013 at 9:48 pm

    Great and inspiring post, Samantha. So cool that you were able to display the sign with pride at your dear friend’s wedding!

  1401. Nichole on October 3, 2013 at 6:46 am

    Thank you for this post!
    Even though they’re usually needed, I too find daytime naps to be disorienting and not such a great experience. My roommate always says I look angry after sleeping in the day and I always thought it was just residual annoyance at my recent diagnosis. It’s nice to know that this grumpiness is experienced by other people with narcolepsy.

  1402. Lars Ickenroth on October 3, 2013 at 6:55 am

    Very recognizable. Especially the guilt part. Not getting enough done in a day, or having no energy to do so really bothers me. Especially if it is accompanied by many naps or long naps. The 15-20 min rule works very well. But sometimes I do feel I need more. I think there’s something in our brain that just ticks off a box saying ‘waking up in the right/wrong stage of sleep’. The sleep itself doesn’t affect me very much, it’s the moods and the constant rumination of a lazy/sleepy mind that does. I feel I’m less sociable by the day, though people can’t see it.

  1403. Bridgette on October 3, 2013 at 8:00 am

    Julie,

    Since I usually nap at work, I had to find a way to limit my nap time from the get go. It sounds silly, but a kitchen timer actually works perfectly to help time naps. I bought a cheap kitchen timer to work, and I use it to keep my naps within 30 minutes without having to fuss with alarms when I’m tired.

    I also find that simple breathing exercises help with grumpiness. Mindful breathing before AND after naps really helps me ground myself and keep me from letting tiredness dictate my actions. Doing something constructive immediately after the nap also helps me have something to concentrate my energies on, instead of letting my mind wander, or get wrapped up in what someone else is doing (or not doing, as is sometimes the case).

    Hope this helps, and thanks for sharing!

    Bridgette

    • Samantha Vandeberg on October 3, 2013 at 12:12 pm

      LOVE this idea of mindful breathing, Bridgette!

  1404. Katie on October 3, 2013 at 11:18 am

    Wow – so familiar! Thanks for sharing Julie. I also tend to be the beast right before a much needed nap. I’m not sure if others have experienced this, but I find if I lie down flat I sleep for an hour and awake as the beast. If I don’t sleep fully flat, but rather 1/2 upright – such as propped up pillows or in a halfway reclined seat of my car (while parked) – I don’t go through as much of a rollercoaster ride and my body tends to naturally wake up after 20 min. I usually set my alarm just in case, though.

    • TV on September 17, 2014 at 2:13 am

      I’ve noticed differences with laying flat vs laying propped up. Good to know others have experienced this!

  1405. Audrey on October 3, 2013 at 11:39 am

    This is actually a major topic in my Narcolepsy Institute support group. One older woman comes with her sister who’s become quite a Narcolepsy activist herself and loves our group. Recently the sister has brought this up a lot. She said she used to think her narcoleptic sis hated her, because of these rages. Then, she started to see the pattern of mean behaviors from her generally very sweet sister as following naps. I will share this post with them when I see them for sure.

  1406. Mike S C on October 3, 2013 at 11:51 am

    Its hard to know wether or not N contributes to my mood when i wake up after a nap..I am often grumpy after, which is odd as i normally feel quite refreshed but i suppose i have always thought that is was normal to wake up in a bad mood.. I get most frustrated when I have slept longer than normal especially when im at home. Usually my partner gets the short end of the stick here, as i tend to blame her for not waking me……….
    Julie…I do love reading your blogs and other literature.. I dont really have anyone to talk to about my N… so you really help on the bad days…. Thanks…

  1407. Samantha Vandeberg on October 3, 2013 at 11:53 am

    Oh, I needed to hear this so much. There have been so many tears and temporary wounds inflicted in our house due to waking from sleep demonically possessed. For me, this is my most hated aspect of Narcolepsy. Not the EDS, not the Cataplexy, not struggling to sound intelligent when my brain is completely fogged… those things frustrate me, but they don’t inflict any pain on someone I love. The reality that something within me can rise with such a mean spirit, say truly awful things and then only vaguely remember what I’ve said that caused someone pain… it stinks. I always feel like the bottom of the barrel scum. Guilty and yet unsure how to apologize because I’m not entirely sure what happened. Thank you so much for sharing this. Narcolepsy is black and white and every shade of grey. Even in our community, I think we have a tendency to focus on the good aspects or what ails the individual, but admitting the darker, nastier aspects that affect the ones we love is difficult. Big hugs and lots of love from Virginia. <3

  1408. Nicole on October 3, 2013 at 2:43 pm

    GREAT post!! I’m definitely a beast when I need a nap and lots of times I wake a beast. Give me about 15 minutes and usually back to me. (Unless of course someone continues to push buttons). The 20 minute max nap helps a lot. I like the honesty tip. I’m going to try it. Thanks Julie.

  1409. Katherine on October 3, 2013 at 2:48 pm

    I can relate. Naps don’t seem to necessarily make me feel rested or new and improved, but I must take them. My neurologist told me not to set an alarm, so I sleep for 1 to 2 1/2 hours.

  1410. Lucy on October 3, 2013 at 9:41 pm

    I have never had a restful sleep, nor have I ever woken up NOT as angry as a bear.

    … and in my case, you can forget about naps entirely.

    If I go down for a nap … I’ll wake-up hours later (like, 12 hours later!). … and forget about the alarms too, I have 27 of them in my bedroom, and regularly sleep through all of them.

    By definition, I get stuck in REM sleep from 2-5 mins of closing my eyes, until … well, for the DURATION. Is it any wonder I wake-up like a bear?! So, I try not to feel guilty about it. But of course I do!

    Imagine you wake-up a member of the non-N society right in the middle of THEIR REM sleep. I can guarantee you they’d act like an angry bear too.

    Don’t sweat it. There’s nothing you can do about it.

  1411. Jamie Brantner on October 4, 2013 at 1:38 am

    If I take my nap on the couch I usually wake up in a decent mood. If I take a nap in the bedroom and I get woken up before I want to, beware. But, my husband doesn’t like me sleeping on the couch. Not just me, anyone really. I’ve tried to explain that if I go into the bedroom for a nap I’m going to be out for hours, but if I sleep on the couch I can get 20 minutes and be ok. My brain has the crazy idea that the bed is for real sleeping, and the couch is for napping. Until it’s the middle of the night of course. Also, because of the sleep paralysis my family has the idea that I can sleep through anything so no matter where I am sleeping they are not always considerate, which generally results in my waking up and exploding until I’ve been upright for at least 30 minutes.

  1412. Stacia on October 4, 2013 at 1:56 am

    I also get really cranky right after napping. I also am very irritable after waking up, but more so when I have pushed through my sleepiness and haven’t taken a nap at all. That’s when I’m the worse “beast” of all. I always advise my family that when I’m really sleepy to please give me some space, try not to hold any deep conversations with me, and give me at least 15 minutes after I wake up before talking to me. The not talking to me the first 15 minutes after waking up really helps a lot as it gives my brain some time to “figure out what’s going on” before I have to start processing new information from others. So far, these tips have helped keep my “beast” tamed after my naps.

  1413. FDA Narcolepsy Meeting Video – Watch Now! on October 4, 2013 at 3:03 pm

    […] REM Runner’s Recap and Photos […]

  1414. Tiffany on October 4, 2013 at 10:35 pm

    All of my family are non-supporters; mostly, I believe it is because I have been labeled as “lazy” for so long (since about 8 years old, over thirty years). Added to the fact they they feel that they have “real” medical conditions – ones that cause pain. Since we currently live together, I cannot relegate them to the background, but I can now drown out their collective voice/labels. This is thanks to your book, website and others in the N community that let me see that I AM NOT LAZY( and that my will-power played no part) and I have reasons for my extreme need for sleep…. I now feel legitimized.

  1415. TheDreamer on October 5, 2013 at 7:27 pm

    So, nothing is captured in the video for comments entered into the Discussion box, except for the last two items near the end of part 1?

    Hopefully the things mentioned in there during the meeting were still captured somewhere, and will show up in a later report….

  1416. Mar on October 6, 2013 at 1:28 am

    Our grandson is coming along great. I never thought things could
    change so much. I wanted to share this with all of you and to say never give up
    hope.
    Do you remember me crying to all of you about my grandson,my heart breaking
    and really believing he couldn’t be any different but something clicked and he
    woke up.
    Well he still isn’t up to what he was but he isn’t that far behind.
    Don’t give up. It is the hope that keeps the healing going…
    You are all in my prayers. Remember “HOPE”
    Mar

  1417. Mike Duffer on October 7, 2013 at 12:23 pm

    I have had my best naps on the kitchen floor. (willfully and unwillingly) lol!
    If I nap in the bed room, it lasts for hours and if I surface during REM I am irritated due to the fact that my body is still in sleep mode and my brain hasn’t finished what it needs to do. These are totally random. Structured naps never seem to help. So for me, I have to nap when suffering the sleep attack for my brain to reset to get any relief from the foggy world of dream. Structured or planned naps sometimes make me worse than I was before the nap.
    If I am to get a few hours of productivity done, I take my meds then kick back in my easy chair and BAM! I’m out until the Meds absorb and I actually wake up feeling like I did before Narcolepsy shrouded my world. This only gives me an hour or two then it is back to the haze of Dream intrusions and groggy thinking and C attacks. I have found the older I get, (I was 23 when Diagnosed, I am 50 now) the less I am able to cope with all of it…Narcolepsy w/cataplexy and the treatment side effects. I also am seeing more and more memory problems and more occasions of getting reality mixed up with dream. So I guess you can say that the waking up benign or beastly is a constant among us.

  1418. […] FDA’s Webcast Recording from […]

  1419. The Dreamer on October 9, 2013 at 10:16 pm

    Hmmm, that’s a tough one…. would I be positive about the event, or negative about how things have been since….

    • julie on October 25, 2013 at 7:35 pm

      It is a tough exercise, but hopefully worthwhile! You can be positive or negative – whatever feels right. Thank you, Dreamer. 🙂

  1420. The Dreamer on October 9, 2013 at 10:25 pm

    Napping is also a huge ordeal when you have sleep apnea….have to use my AutoCPAP if its a planned nap.

    If its unplanned….it depends on what position I was in when I had the nap…

    The strong desire to nap while sitting in front of my computer at work were usually surprisingly refreshing, when allowed to finally happen…so I started letting them happen…to eventually they just happened without checking with me first.

    It was complaining that I had lost control, that finally led to my first sleep study (that and my BP was through the roof and I had inexplicably gained 40lbs in a couple of months….)

    Naps in other positions have been terrifying….would have bizarre HH. Though I also had bad onset HH for most of the naps in my MSLT.

  1421. Kate Callison on October 10, 2013 at 6:16 pm

    Thank you Julie! I’m reading your memoir right now, and have had ppl tell me I look so happy or that “I’m glowing” (which hasn’t been the case for a while, especially after the Adderall triggered a manic depressive episode). I think it’s because I was just diagnosed and it was scary as hell, but hearing your experiences and knowing that you’ve pushed through and are living a productive life that touches so many people is very inspiring. I’m an attorney who is passionate about my job, and it is such a blessing to have a means of connecting with other people who are deciding to “make narcolepsy the best thing that’s happened to [them].” Your attitude is contagious! All the best to you on your worthwhile endeavors!
    Katie Callison

    • julie on October 10, 2013 at 7:49 pm

      Thank you, Katie! I’m so glad you are enjoying my book. I’m so sorry to hear you have narcolepsy but I’m so glad to hear you are passionate about your job. This makes a huge difference. Also, I agree, connecting with other amazing people overcoming this adversity is so helpful. Cheering for you! Sending wakefulness and big smiles your way, Julie

  1422. delayed2sleep on October 12, 2013 at 12:28 pm

    What a great article, Peter! It is all so familiar and well-expressed. You did have the advantage of learning that DSPS (DSPD) exists, much earlier in life than I. My first sleep doctor appointment was in 2004, and when he said “You have DSPS!”, I’d never heard of it before. By then DSPS had been described for over 20 years, and virtually no doctor had heard of it. Now, 10 years later, there are still hardly any doctors who’ve heard of it!

    How many thousands of people are still suffering it, thinking that they are alone, lacking in self-discipline and thereby in self-esteem — not to mention accommodations? The organization “Circadian Sleep Disorders Network” certainly has its work cut out for it. Many thanks for taking the initiative and starting that organization!

  1423. […] and  moderate the chats each month!  And thank you, Julie Flygare, for signing copies of your book for the giveaway!  Here’s a recap of the September […]

  1424. Julie Barfuss on October 16, 2013 at 3:48 am

    Shoot dang! That gave me chills!

  1425. Carrie-Ann Burns on October 16, 2013 at 6:38 pm

    This was so beautiful to read, and so very real great job!

  1426. joyce on October 17, 2013 at 5:07 am

    Dear Denna: Your poem brought me back thirty years. You are describing my nightmares – the ones I experienced when I was about your age, a single mom of three teenagers. My son slept in a loft over the dining room where he could hear my muffled screams coming from any room… he’d practically throw himself down the steep, narrow steps to wake me, realizing I was terrified and paralyzed. I still have cataplexy and sleep paralysis and I’ll even get a real humdinger of a nightmare every now and then, for the most part my nightmares don’t have that degree of fear anymore.

  1427. The Dreamer on October 18, 2013 at 1:44 am

    Darn it, I forgot the copy of your book that I got when it first came out that I was going to see about getting you to sign.

    Not that I necessarily need another signed copy….but since I got the the other one, I had thought that I would get this other one made out to ebay….jk. Actually, to give to my mom…even though I’m not sure I’d want her to be getting any ideas….

  1428. Kerry on October 18, 2013 at 5:40 pm

    Julie, good luck and have fun at the conference!! I wish I could be there this year to be in your sessions and hear other great presentations — maybe next year!

  1429. Donna L. Haring on October 19, 2013 at 3:35 pm

    Julie & Everyone,

    Sending telepathic thoughts and hoping to read mind
    Currently severe cataplexy attacks have me in a bind
    Just transferred to Long-Term Care last night
    Bet your Narcolepsy Network Conference sessions will be out of sight
    Optimistic attitude will see me through without a doubt
    Humor, moderate exercise, mixed with rest, make me smile instead of pout
    Writing, as well, my main outlet for both positive and negative stress
    Positive vibes, I’m sending your way for nothing but the best
    Wishing conference is informative, fun, hoping to see video as form of distraction,
    Sure your lead sessions will be the main attraction.

    Sincerely,

    Donna L. Haring
    PWN and Cataplexy who is not letting it get her down

  1430. chrys on October 22, 2013 at 2:26 pm

    Thanks for signing the book for my son. Great Conference!

  1431. Bonnie Young on October 23, 2013 at 1:15 am

    kudos for the article – for the organization – for raising awareness
    Years ago, before I was diagnosed with narcolepsy, I was very late finishing my master’s thesis. I knew I was going to have a hard time staying awake for writing, and that I really needed to get it done quickly. I decided to let my clock free run, though with natural light. I ended up going to sleep around 4 AM and getting up (sans alarm) at 10 AM. I slept all 6 hours, at least as well as I could tell, and stayed awake all day. Not having the usual strictures on when to be here and when to be there I was free to keep a regular schedule. It worked. No Meds after the first 10 days thst I used to get the schedule started.
    In our everyday world, it is so hard to run your own clock. No matter what time you (or your body) picks, there are always meetings, parties, church, rehearsals, the hours that the busses run and the stores are open, … to interrupt your schedule. And trying to run a precessing clock is even more impossible. But I still dream of it. It feels so good to wake up from several hours of consolidated sleep.

  1432. Randy P on October 23, 2013 at 6:48 pm

    Julie – thanks for your willingness to chat and listen to my family’s story at the conference. Your book helped me so much to understand what my wife and kids are going through. We are lucky to know you and happy to be your first South Dakotan’s in the Not Alone campaign.

    Best wishes – working on MT!!!

  1433. […] are informed and empowered would shorten the average time for diagnosis. @RemRunner shared an infographic on narcolepsy that depicts symptoms, helping to raise awareness that can lead to an accurate diagnosis more […]

  1434. Christopher Ingram on October 25, 2013 at 9:53 pm

    Looking forward to reading the letters once they start publishing, as well as writing my own as well.

    On a side note – I’m very much enjoying your memoir Julie. It’s quite something to be able to experience another person’s perspective throughout the entire diagnosis process.

    • julie on November 4, 2013 at 3:56 am

      Thank you so much for participating in the Blogathon, Chris! I’m so glad you are enjoying my book – thanks for reading it!

  1435. Arianne on October 28, 2013 at 10:31 am

    Inspiring, Even Before I Was DiagnosEd I WantAs MotivateD. IM 3Month Pregnant And Struggle Everyday With ThingsA Lot OF People Take For Granted. Even Educating FriendsI Don’tBelieve They Truly Understand The Effect It Has On Us, EspeciallyBeing Pregnant. I’m Blessed To.Have Great Family And A Understanding HUsband Without Them I Don’tKnowWhere I Would Be……Sleepin More. Lol

  1436. Laura Forgie on October 28, 2013 at 12:15 pm

    Hi Julie!
    I came across your Instagram just by chance but I think fate had a little to do with it. I’m 27 years old, I started having symptoms when I was 16 it took 4 very long 4 years to get diagnosed. I feel like my family and friends are really supportive but at the same they do make jokes here and there about my condition. I always say it is hard to live to with but it’s not cancer. More just an inconveinance than anything. Living with the condition is hard but I also find some of the symptoms of the medicine another hard aspect to deal with. I could go on and on but I just wanted to deeply thank you for making this site and all your time and effort you put into making people like me feel like I’m not alone.

    Thanks again,
    Laura Forgie
    Pgh, PA

  1437. The 4th Annual Sleepy Pumpkin Patch 2013 on October 28, 2013 at 8:59 pm

    […] you to Sarah and John in Ohio for sharing their NARCOLEPSY: NOT ALONE […]

  1438. The 4th Annual Sleepy Pumpkin Patch 2013 on October 28, 2013 at 9:00 pm

    […] Sleepy Pumpkin Patch 2012 […]

  1439. The 4th Annual Sleepy Pumpkin Patch 2013 on October 28, 2013 at 9:01 pm

    […] Sleepy Pumpkin Patch 2011 […]

  1440. […] – my personal story of narcolepsy from beginning symptoms all the way through the NARCOLEPSY: NOT ALONE campaign. Highlighting the campaign was an exciting well-received addition to my story. I’m […]

  1441. wendy on October 29, 2013 at 1:34 am

    I think this campaign is awesome! My 6 year old son was diagnosed in July so I’m trying to get plugged in anyway I can!

  1442. Narcolepsy Network Conference 2013 on October 31, 2013 at 11:48 pm

    […] View additional conference photos in the NARCOLEPSY: NOT ALONE gallery. […]

  1443. Katie Callison on November 1, 2013 at 12:23 pm

    Were any of your presentations taped by chance? You look so confident and happy. Job well done!

    • julie on November 1, 2013 at 4:38 pm

      Katie,
      Unfortunately, my sessions were not taped. I wish! Hopefully someday soon.
      Thank you for your support,
      Julie

  1444. Dear Julie on November 1, 2013 at 3:15 pm

    […] is my personal response to my “Dear Diagnosis” Blogathon prompt. Read other responses and join […]

  1445. Dear Diagnosis Blogathon on November 1, 2013 at 4:36 pm

    […]  An Unnatural Athlete – “Dear Jill”Norexin – “Dear Meaghan”REM Runner – “Dear Julie” […]

  1446. Guest Post: Dear Terrie on November 1, 2013 at 5:50 pm

    […] post by Terrie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ——– Dear Terrie,   […]

  1447. Dear Diagnosis Blogathon on November 1, 2013 at 5:55 pm

    […] Guest Post – “Dear Terrie” […]

  1448. Jill on November 1, 2013 at 6:22 pm

    Terri, what a great mom you are and a great supporter for your daughter! Thanks so much for sharing you stories!

    • Terrie on November 7, 2013 at 11:44 am

      Thank You Jill. Thanks for reading. I am truly blessed to be her mom.

  1449. […] This post is part of the “Dear Diagnosis Blogathon,” which was created by the incredible Julie Flygare.  For more information on the event, click here. […]

  1450. Hazel Doland on November 1, 2013 at 9:30 pm

    What an insightful look into what i go through daily. I was just diagnosed with severe narcolepsy two years ago. For years, I thought it was just my life style. I worked several jobs and thought my body was fighting for sleep whenever it could find it. All that made perfect sense to me, until i got one job 8-4. Every day driving home i would fight falling asleep while driving. This fight i lost on more than one occasion. Riding off the side of the road, barely missing a tree, into the other lane and sleeping at a red light became frequent incidences, too frequent. I decided to go back to the doctors once again. In the past I was tested for anemia, lupus, Lyme disease, chronic fatigue syndrome, all before they decide to to the two-day sleep study and getting diagnosed with narcolepsy. My doctor commended me at the time for coming in for help. I told her, I was too young to die, I was 41 years old at the time. Thank you for sharing what many people have yet to fully understand.

  1451. alyson moore on November 2, 2013 at 4:00 am

    Thank you for this website; One Step Ahead of Narcolepsy. I was recently diagnosed with Cataplexy after many years of being misdiagnosed. I was treated for illnesses I did’nt have. It was a very long confusing struggle not knowing what was wrong with me. Alas, I have been on Xyrem for twenty-nine days now. I am learning so much about this illness daily. I admit, I felt very alone with the new found knowledge of all that I must bear on this journey with Cataplexy; have not been told yet in regards to Narcolepsy. I have a new sleep medicine doctor whom I see next week. Now that I am more “AWAKE” and reading the many stories of others, I am feeling less alone. Friends and Family do their best in understanding, but here on the website, I don’t have to explain myself at all.

    I read your book, “Wide Awake and Dreaming” which helped me alot. I plan to have my brother read it next.

    After years of not being able to do my artwork due to sleepiness and many other uncomfortable human hurts, I was finally able to attend my drawing class at The Scarab Club, one of the oldest art communities in Detroit Michigan. Of course, I am not driving yet and hope to one day soon.

    One day at a time.
    Many smiles so far with “ME” feeling better—Amazing to get Restorative Sleep.

  1452. Cindy on November 2, 2013 at 11:59 am

    Julie, it’s great that your significant other is so supportive! I know that feeling firsthand. You guys make such a cute couple…I want an invite to your wedding, when it eventually gets here. No pressure! C

  1453. Julie Ann on November 2, 2013 at 4:15 pm

    Julie, your letter was beautiful! You had me in tears when I read it. “Fall. I promise the world will catch you.” Indeed. So many of us will always be here to catch you, and you can always count on me to be among them.

    I’m incredibly lucky to count you as a friend, and am happy to be able to walk this crazy, strange trail with you. (And you *are* more awesome for everything you’ve gone through, and for how you’ve handled it and persevered. You’re amazing, lady!)

    Big hugs and lots of love,
    JWN Funk

  1454. Christopher Ingram on November 2, 2013 at 6:32 pm

    Thanks Terrie for all of your help in my own struggles with narcolepsy as well!

    • Terrie on November 7, 2013 at 11:46 am

      Chris, Isn’t it just crazy that we share this bond? You on my husbands side of the family. Me being narcoleptic. Then Katie as well. I am so very thankful God puts us in places with people just when we need them.

  1455. Melody on November 3, 2013 at 12:47 am

    Wow Terrie! What a lovely letter. I can’t believe you daughter suffered from cataplecticus. That is really rough and kind of scary! It’s good that you recognized it and had it diagnosed. I had mine since highschool as well and you are completely right that school is already difficult enough! A lot of my teachers even made fun of me when I fell asleep. They joked asking me if I had narcolepsy (although I didn’t know back then) and my family wouldn’t allow me to speak about symptoms because it just wasn’t discussed back then. Great to be more out in the open and knowledgeable.

    • Terrie on November 7, 2013 at 11:50 am

      Melody. Thanks for reading. I feel bad for what you had to go through, So many do just because Narcolepsy is so under diagnosed. Thank for reading my post. I worked the last 3 days and just getting to these post on here. Looking forward to reading all the post on the blogathon. Take care.

  1456. Melody on November 3, 2013 at 8:07 pm

    Wish I could give “then and now” you a hug too! Thank you for sharing.

  1457. Robert N Pope MD on November 3, 2013 at 8:36 pm

    Julie,
    Thanks again for joining us in Louisville for our annual Kentucky Sleep Society meeting. The feedback regarding your presentation from our attendees was all positive. I hope you have the opportunity to discuss your experiences with narcolepsy at many other medical meetings.
    By the way, your memoir is required reading at our sleep center!
    RNP

  1458. Guest Post: Dear Katie on November 4, 2013 at 3:47 am

    […] post by Katie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join […]

  1459. Dear Diagnosis Blogathon on November 4, 2013 at 3:55 am

    […] Guest Post – “Dear Katie” […]

  1460. Hilary T on November 5, 2013 at 1:22 am

    What a great post Terri, what a special mama you are to your little Sleeping Beauty 🙂

  1461. Emille Rae on November 5, 2013 at 5:07 am

    it seems it has been “a blessing in disguise” for you julie… shaping you into who you are today. the world catching you. 🙂 <3 thanks for sharing everyones!

  1462. Guest Post: Dear Jennifer on November 6, 2013 at 6:20 pm

    […] post by Jennifer in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join […]

  1463. Dear Diagnosis Blogathon on November 6, 2013 at 6:21 pm

    […] Guest Post – “Dear Jennifer” […]

  1464. Terrie on November 7, 2013 at 11:53 am

    Thanks for reading Hilary. I am blessed to be her mom. I can’t imaging her having it and us not knowing about narcolepsy. I truly do see me having it 1st as a blessing. Giving me insite as to what she and others go through. Take care.

  1465. Terrie on November 7, 2013 at 1:24 pm

    Thanks for your letter Katie. Keep up the good work of letting others know. I’m glad you are on the right path and are helping others that are seeking answers. Take care.

  1466. Terrie on November 7, 2013 at 5:16 pm

    Thanks for sharing your story. You are right to remind you mom it’s not her fault. Who are we to blame? We are connect by this “disease” and now need others to know just how bad it can be. It doesn’t change who we are and in fact can lead us into being a better person. Take care.

  1467. Terrie on November 7, 2013 at 6:09 pm

    Thank you again Julie for such a great web-site and hosting the Blogathon. It has been truly inspirational for me to write my letter as well as reading the many others that have posted here the last week. Thank you for putting so much time and effort into raising awareness for us all. I haven’t read your book as of yet, but do plan on doing so. Keep up the great work you have started.

    • julie on November 8, 2013 at 5:41 pm

      Thank you, Terrie! I have enjoyed this blogathon so much too. I’m so thankful for your support of my efforts. I’m so beyond honored to be a part of this community. Thank you for trusting me and being part of your journey!

  1468. Ian Buda on November 8, 2013 at 4:22 pm

    Julie,
    This conference looks alot of like fun and seems very informative; I’m thankful that I’m not alone. I hope to make it to next year’s conference in Denver; perhaps I’ll find someone to nap with. Thanks for all you do and for raising awareness for us!

    Big “I”

  1469. Dear Brave Super Sweet Jennifer on November 8, 2013 at 5:00 pm

    […] post by Jennifer in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here.   ————-   Dear […]

  1470. Dear Diagnosis Blogathon on November 8, 2013 at 5:09 pm

    […] Guest Post – “Dear Brave, Super Sweet Jennifer” […]

  1471. Guest Post: Dear Katie (A Teenage Narcoleptic) on November 8, 2013 at 7:01 pm

    […] post by Katie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join […]

  1472. Guest Post: Dear Katie (A Teenage Narcoleptic) on November 8, 2013 at 7:05 pm

    […] Terrie’s Letter (Katie’s […]

  1473. Dear Diagnosis Blogathon on November 8, 2013 at 7:15 pm

    […] Guest Post – “Dear Katie (Teenage Narcoleptic) […]

  1474. Guest Post: Dear Terrie on November 8, 2013 at 7:18 pm

    […] will always know that she, as well as others are not alone.  ————- Read Katie’s letter (Terrie’s daughter) […]

  1475. Terrie on November 9, 2013 at 7:42 pm

    Thank you Katie for sharing your letter. You are such a brave young girl. I have watched you go through this process over the last 3 years and it has really been hard as your mother. I’ve said it before that we are in a learning process of how to live “normal” as a teenage narcoleptic. I know it’s not easy for you because you think you have to give up so much of your freedom but in reality you just have to learn your limitations. Narcolepsy is what we have. It doesn’t have to be who we are or what we want to become. You are an inspiration to me as well as many others by being so open about your narcolepsy. Keep up the great work of educating others about this.

    Love,
    MoM

    • Chris on November 10, 2013 at 2:04 am

      Great job explaining this condition. I know you’ll help others with your situation. The good thing is, that mom and daughter both have it. Not that having narcolepsy is good for you, its that you both have someone close to you that really understand more than most. Love you both.

      • Katie on November 11, 2013 at 1:59 am

        Thanks, Chris. It really does help me out that my mother has narcolepsy as well. I wouldn’t wish this disorder on anyone, but I thank God that somebody so close to me has it so that I know I am not alone.
        We love you too!

    • Katie on November 11, 2013 at 2:00 am

      Thanks, mom. I will probably have to ‘learn’ for the rest of my life just because of how bad it is getting, however, I can not wait until it decides to level off for a while.
      I love you.

  1476. Celebrating my 4-year Blogging Birthday on November 10, 2013 at 1:38 am

    […] in honor of REM Runner blog’s 4th birthday, I’m unveiling the first-ever Narcolepsy Advocacy App. I’m SO excited to give this FREE educational tool to the narcolepsy community. Please […]

  1477. Speaking at FIU Medical School on November 10, 2013 at 1:59 am

    […] narcolepsy advocate – raising my voice up and giving others the courage to join me. The NARCOLEPSY: NOT ALONE campaign was the highlight grand finale of the […]

  1478. Samantha Vandeberg on November 10, 2013 at 3:19 am

    LOVE this! Absolutely fantastic, Julie!

    • julie on November 10, 2013 at 7:13 am

      Thank you, Samantha! I’m so proud and excited to finally share it with the community. 🙂

  1479. Adgee on November 10, 2013 at 3:40 am

    I am so happy to see that, even with so much on your plate, that you are feeling so very, very at peace with your current role in life. Always know that you have a horde of supporters at your back (and on every side!).

    Keep up the good word… and always remember that you can ask for help!

    • julie on November 13, 2013 at 11:41 pm

      Thank you for your support, Adgee. You’ve helped me build my wings. 🙂

  1480. laura j evert on November 10, 2013 at 7:57 pm

    julie! any chance you will record your talk and share it with us? would LOVE to hear it! oxx

    • julie on November 10, 2013 at 7:59 pm

      Thank you, Laura. I hope to record one soon. 🙂

  1481. Alex Withrow on November 10, 2013 at 8:00 pm

    You’re such an inspiration. I was so happy to be a part of this weekend!

  1482. Alex Withrow on November 10, 2013 at 8:01 pm

    Happy blogiversary, Jules! Four years of doing great, inspiring work. You make such a big difference within the sleep community, and will certainly continue to do so 🙂

    • julie on November 13, 2013 at 11:41 pm

      Thank you for believing in me, Alex!

  1483. Alex Withrow on November 10, 2013 at 8:03 pm

    LOVE the app. Your months of hard work really paid off here!

    • julie on November 13, 2013 at 11:05 pm

      Thank you, Alex! Your pro video work really helped this post shine.

  1484. Katie Callison on November 10, 2013 at 9:17 pm

    Another amazing advancement in helping uss all out! Congratulations and thank you!

    • julie on November 13, 2013 at 11:06 pm

      You’re so welcome, Katie. Thank YOU for checking out the app. 🙂

  1485. Blanca on November 10, 2013 at 10:01 pm

    The app is really practical and i formative. The inly aspect I would comment about is that the user can’t zoom in the text to be able to read better the info available in the app, unless a magnifier is close.
    Aside from that I wish I cod get this info in otherlaguages, since I know a lot of PWN that are not English speakers. Julie keep up the fight to stay awake and to educate others on what to us is second nature. God bless and I wish you a lot of Success.

    • julie on November 13, 2013 at 11:06 pm

      Hi Blanca – thank you for your valuable feedback. I wish this was available in other languages too! Hopefully someday soon. Big smiles and many thanks, Julie

  1486. Tanya L. Anderson on November 11, 2013 at 12:48 am

    Dear Julie, I just wanted to let you know that I too have narcolepsy…pretty bad. I really have a hard time staying awake even to the point of setting down an crying because I am so tired. I have been going to a Chiropractor in my home town of Ashtabula, Ohio. I can Honestly tell you that I AM seeing results. The Doctor tells me that one day I will be off all of my “wake-up med’s”. I just wanted to share this with you. Sincerely yours, Tanya L. Anderson

  1487. Joyce Gray on November 12, 2013 at 7:00 pm

    Dear Julie,
    I would love to get a larger poster of the narcolepsy infographic to post in the sleep center. Can you tell me if that is possible? Thanks

  1488. Jenn on November 13, 2013 at 5:41 pm

    That is a beautiful letter. You are an amazing MOM! Take care, and please tell Dylan know he is not alone, and so many people are on his side. Take care!

  1489. delayed2sleep on November 14, 2013 at 4:32 am

    It is a very lovely letter, Jennifer, and I hope you’ve sent a copy to Dr. Rai. He deserves it (and maybe that hug, too).

    (I don’t have narcolepsy, but I know the revelation of finally, finally finding a doctor who believes me and gives me a name for what ails me.)

    Best wishes to Dylan!

  1490. Elizabeth on November 14, 2013 at 5:08 pm

    Wow. I am in tears. I first started showing signs of narcolepsy around age 12 (falling asleep in class) and my mom took me to the pediatrician for some tests (thyroid, anemia). The doctor’s conclusion? “She just needs more sleep than the average person.” I started developing cataplexy a year or so later. I remember saying to my mom, “Do your knees ever buckle when you laugh? Mine have started doing that sometimes.” Despite the fact that she actually knew a woman with Nw/C and knew to call this strange muscle weakness ‘cataplexy’, she didn’t take me back to the doctor. The symptoms got worse over the years but I learned to suppress my emotions around strangers (to avoid cataplexy) and got used to falling asleep all the time. College was a nightmare. I was frequently suicidally depressed and have distinct memories of suffering through sleep attacks while trying to take exams. Needless to say, my grades were AWFUL, but I somehow managed to graduate. Fast forward to my late 20s and the advent of Google (hallelujah!!) and I finally started to accept that I might really have this weird disease called ‘narcolepsy’. I realized that Hollywood’s depictions of it weren’t exactly the way it went down in real life (I’m looking at you, “My Own Private Idaho”). I didn’t have health insurance at the time, but I was so desperate to finally get help that I charged the full cost of a sleep study to my credit card. After the MSLT was finshed, the technician said to me, “Uh. Usually we have you come in later to discuss the results but you might want to stick around and see if the doctor can give you some medication today. You were asleep in 20 seconds and in REM in under a minute.” Ha! I passed! I went home that day with some samples of Provigil and the most satisfying sense of validation I have ever experienced. FINALLY! I really wasn’t just lazy, or depressed, or in need of exercise or better eating habits, or, or, or… The doctor had given me a diagnosis and there were medicines that could help me! Of course, the excitement over finally being diagnosed was short-lived when I came to realize that the available medicines weren’t free of side effects and didn’t work miracles. But at least I didn’t feel mostly dead anymore. I still get very frustrated when I think of how different things might have turned out if I had been correctly diagnosed earlier, but I can’t change the past. Geez. Sorry for the mile-long comment, but this just really touched me!

    • Jen on December 15, 2013 at 10:02 pm

      I’m sorry, I haven’t looked at the comments in a while. Thank you for your comment, it was perfect. I wish a diagnosis was magical and it was all fixed but unfortunately we all, pwn’s and those that care about them, fight everyday. We can’t change the past but we can make the future as bright as we can to others who may be going through the same struggles.

  1491. littleloire on November 14, 2013 at 7:45 pm

    Hey, actually I’m so far away from you because I’m french, so I live in Paris. But when I discovered your website, it has made me so happy to see that everywhere in that wild world peoples like you where fighting to help humanity openning there damn mind! :p
    Thank you to bring hope to narcoleptique even at the end of the world, that’q quite amazing and so soothing and comforting.

    PS: I deeply apologize for all the misspellings, I’m trying to do my best!!

  1492. David Farmbrough on November 15, 2013 at 2:54 am

    That was very well-written Angie. I loved the way that through all the hard times, there was a real happiness that these children had brought into your lives. Also, a ringing endorsement of Julie Flygare’s book!

  1493. Elaine Armstrong on November 15, 2013 at 9:33 pm

    I cry every time I read a Dear Diagnoses letter.

    I`m so happy for you both that you finally found an understanding doctor.
    You seem to have a great mother /son bond… It will make your journey so much easier..
    Ye are not alone xxxxx
    Best Wishes
    Elaine

  1494. Holly Twedt on November 16, 2013 at 6:30 am

    LOVE art and journal ideas I have also been led to do this! One resource is:
    Wide Open: Inspiration and Techniques for Art Journaling on the Edge.
    It is put together by Randi Feuerhelm-Watts.
    There are cards inside that inspire you to do art journaling. There is a creativity notebook inside to use. There is a Facebook page on Art Therapy.

  1495. Peggy Largin on November 17, 2013 at 9:44 pm

    I have non-rem narcolepsy for 15 years…went gluten-free diet…no more sleep attacks…I got my life back!….hope this helps!….

  1496. cindy on November 18, 2013 at 2:18 pm

    This should be your second book!

  1497. diagnosis narcolepsy - Mama In The Now on November 21, 2013 at 4:52 am

    […] in response to Julie Flygare’s request for fellow persons with Narcolepsy to participate in her “Dear Diagnosis Blogathon”. Julie has become a strong Narcolepsy advocate and I am honored to add to her collection of […]

  1498. Julie Ann on November 24, 2013 at 8:25 pm

    Oh, how I would love to stand and applaud for you right now! Such a beautiful post, Julie. Truly! I have felt the same way, over and over again.

    Sending warm hugs and lots of love. <3

    • julie on November 24, 2013 at 8:34 pm

      Thank you, Julie Ann. It took some time to work up the courage to write this, but I’m so glad I did. Thanks for your support and love. <3 JWN Fly

  1499. Jill on November 24, 2013 at 8:38 pm

    You didn’t need to add the disclaimer at the end of the post for me Julie. You can always speak on my behalf! Once again, you have articulated something for me that I haven’t been able to on my own.

    Thank you Julie! And sorry about the pharmacist. Ugh! I had a tearful event after an interaction with my long-term OBGYN at my first visit after my diagnosis. She was not happy about one of the N meds I was on and she was a bit of snit about it!

    Thank you for all you do to raise awareness. It’s because of people like you, that people are getting more aware and things are changing for the better!

    Love, Jill

    • julie on November 24, 2013 at 8:50 pm

      Thank you for reading and commenting, Jill! I’m so glad this rings true for you too. You are an inspiration. Thank you for all your support. <3 Julie

  1500. tove stakkestad on November 24, 2013 at 10:30 pm

    Thank you Julie for all your hard work. I have shared your book with my mom – hoping she would read and learn. Reading about your journey was very much like looking into my own world nine years ago – of course I was never smart enough for lawschool – but one can dream! ha ha ha. Again – THANK YOU!

    • julie on November 24, 2013 at 10:54 pm

      Thank you, Tove! I’m so glad my book can help describe your journey. It’s my honor to raise awareness, thank you for your support! <3 Julie

  1501. Katie on November 24, 2013 at 10:40 pm

    Great post, Julie! I really enjoyed reading this. My 1st encounter with how hurtful others’ “help” can be was from a pharmacist. She didn’t suggest a quick-fix solution like prayer, but instead suggested I was causing my Narcolepsy by taking prescribed stimulants (despite the medication being specifically FDA approved for Narcolepsy!). I was so taken aback that I was speechless. Maybe I’ll drop off a Narcolepsy Fun Fact package there (with your awesome infographic!) so they can learn about Narcolepsy. I’m tempted to make a “Did you know…” sticker just for pharmacists after the stories I’ve heard. “Did you know Narcolepsy patients don’t enjoy being treated like addicts?” I’ll refrain, as that won’t solve the issue. All those emotions just resurfaced from reading your similar experiences. Thanks for writing this!

    • julie on November 24, 2013 at 10:53 pm

      Oh wow, pharmacists can be hurtful in their suggestions – so true! Thank you so much for reading, commenting and raising such amazing awareness about narcolepsy, Katie. Your friend, Julie

  1502. Arianne on November 24, 2013 at 10:44 pm

    How About Trying B12. Lol (Read This after Emerging FromMy Hour Nap)

    • julie on November 24, 2013 at 10:52 pm

      Welcome back from your nap, Ari. 😉

  1503. Susan on November 24, 2013 at 10:47 pm

    Oh, the nerve of some people. I’m a Christian minister and I do pray, and if that man had told me that prayer would give me peace of mind and help me sleep, I would have had an angry little mini-sermon for him.

    When I took Reiki classes, the teacher told me that it could cure my narcolepsy. I gave her a funny look and she told me to try it. I self-treat almost daily and I still have narcolepsy. Granted, it has helped with my symptoms and has eliminated my migraines for a long time. But I still struggle every day to wake up, stay awake, and get things accomplished.

    I don’t need fixing. I’m a whole human being the way I am, and yes, struggle is a part of life. Narcolepsy has taught me so many things about life that I would not have learned otherwise. I’m right there with you, sister, leaning in.

    • julie on November 24, 2013 at 10:51 pm

      Thank you for your kind thoughtful comment, Susan. Thank you for understanding that I wasn’t putting down prayer or religion – but yeah, not exactly a solution for narcolepsy in my opinion. My mom is Reiki master and I’ve greatly benefited from her skills – but again, not a cure in my case. Sending wakefulness and big smiles your way, Julie

      • Kate on November 25, 2013 at 4:33 pm

        I know you weren’t putting down religion, just that we would have been able to give the guy an earful (I would have if I wasn’t too stunned to say anything)…although prayer is awesome, God allows some things to not be “fixed” in this broken world we live in, no matter how much we try, or pray, as it were in this case. …because he also wants us to use our brokenness to serve others.

        I am afraid I can come across too much like an “evangelist” for things that have helped my N improve dramatically, I can end up sounding like those you reference. Ugh! Need to be more careful of that!

        I am thankful for this post, and for all your beautiful articulations, Julie. Happy Thanksgiving!

        • julie on November 26, 2013 at 4:03 pm

          Kate – I’m so glad this post was meaningful to you. Thank you for your thoughtful comments. I hope you have a very happy thanksgiving too! Your friend, Julie

    • Ashley on November 26, 2013 at 3:05 pm

      Hi. I’m very interested in Reiki. I have never tried it before but have been getting more frequent migraines. How exactly does Reiki work for migraines?

      • Susan on November 27, 2013 at 5:44 am

        Ashley, I have no idea how it works for migraines, all I know is that it has for me. One morning, about 6 months ago and shortly after taking Reiki training, I started getting a migraine aura. They start out as a small, flashing, zigzag rainbow in the center of my field of vision and over the course of an hour expand to a huge zigzag rainbow wrapping around one side of my field of vision. I started giving myself Reiki on my head, using the standard hand positions. Within 5 minutes the aura was gone.

        Maybe an hour later I started getting another aura. I started doing Reiki again, and it was gone within a few minutes.

        Then in another hour or two, I started getting another aura. I treated myself again on the different hand positions on my head, said “Now this time, stay away!” The aura went away, and I haven’t had an aura or a migraine since.

        I was a total skeptic when I took the Reiki training, but became a believer when the others were practicing on me and I felt hands touching me where we weren’t supposed to touch others. I opened my eyes and saw the hands a few inches above where I was feeling the touch. That was enough to convince me. It is quite powerful, and it is intelligent, divine energy. And it heals what it heals and doesn’t heal what it doesn’t heal. I highly recommend learning it and using it on yourself.

  1504. Christina on November 24, 2013 at 11:03 pm

    I have gotten the same comment before.. I once tried asking a particular religious family member about sleep… trying to get a family history from my mother’s side (I couldn’t get it from her directly since she had passed away). Anyway… same thing! “I sleep like a baby because I’m right with the Lord…”

    Anyway, what a great post! I fight like h*ll against my N attacks most of the time, but when I’m able to “make friends” with it, and when I try to let go of the “losing” feeling when I do have attacks, the shame of having this lifelong disease subsides.

    Great post!

    Christina

    • julie on November 24, 2013 at 11:12 pm

      Christina, I’m so sorry you had such a similar experience too. Safety in numbers, I suppose. You are overcoming adversity daily and I’m cheering for you! Big smiles and many thanks, Julie

      • Dan McDonald on November 24, 2013 at 11:47 pm

        Thank you Julie. I’m not sure I have narcolepsy or not, never had it diagnosed but relate to what you’re saying. I am fairly religious, and in my circles people read a lot. For me when I read it’s immediate journey to dreamland. So I don’t read near as much as people in my circles normally do. But when I think and write it’s like my juices flow and I stay awake and sometimes way too late. So I try to get a little reading in despite the situation, and I do a blog, no big audience but maybe I wouldn’t be doing that if writing didn’t seem to be an end around my falling asleep so easily. You know I’ve heard it said, “Every flower has to bloom where it is planted.” Thanks for blooming where you are.

        • julie on November 24, 2013 at 11:53 pm

          Thank you for this kind comment, Dan. Reading is so challenging for me too. Writing and creative projects make me feel so alive and awake, so I definitely know what you mean!

          I love your flower analogy. It reminds me of a quote from Tina Turner’s ‘What’s Love Got to Do with It’ movie: “The lotus is a flower that blooms in the mud. The thicker and deeper the mud, the more beautiful the lotus blooms.” ~Chinese Proverb

          Sending wakefulness and peaceful thoughts your way, Julie

  1505. Melissa Hill on November 25, 2013 at 2:29 am

    Julie, you can speak for me on narcolepsy anytime !

    • julie on November 25, 2013 at 2:53 am

      Aw, thanks Melissa! Thanks for reading and commenting – it means the world to me. Your friend, Julie

      • Melissa Hill on November 25, 2013 at 5:44 pm

        My comment was wayyyy longer! I don’t know what happened?! When I wake up a little more, I will try to remember everything I said and reply again. I’m sure it was incredibly profound

        • julie on November 25, 2013 at 7:40 pm

          Oh no! I’m sorry the rest of your comment was lost. This is very strange and I’m so sorry.

  1506. Lindsay on November 25, 2013 at 2:44 am

    Julie,
    I don’t have narcolepsy, but I follow your blog because a good friend of mine does. I do have other diagnosis that elicit the same I KNOW HOW TO CURE YOU response from people and I love this post!!! Maybe put it on a shirt or something? It’s kind of hard to bite my tongue sometimes when people tell me to just does this, or just do that. It really does invalidate the issue, thanks for using that phrase because I hadn’t been able to think of a proper way to describe how it made me feel before now!

    • julie on November 25, 2013 at 2:56 am

      Lindsay, Thank you for reading and commenting. It took me a long time to figure out why these comments bugged me so much… It hit me a few weeks ago and I began composing this post. I’m so glad that this post rang true to you. Thank you for supporting your friend with narcolepsy. And I love your tshirt idea! Big smiles and many thanks, Julie

  1507. Saraiah on November 25, 2013 at 3:52 am

    Julie, what an eloquent and powerful post! You speak my mind on so many points in this piece.

    During the four years since I was diagnosed, well-meaning friends and strangers have suggested that I will be cured if I only: pray more often with greater faith, reduce my stress, exercise more, use certain dietary restrictions, stop drinking coffee (!), lose weight, get acupuncture, and more.

    Recently a kind stranger asked if she could pray for me, and when I said yes, she fervently called on the Holy Spirit to “cast out my narcolepsy, or whatever it’s called.” And then told me that if my faith was sufficient, I would be cured. She meant very well, and I simply smiled at her.

    For all these well-meaning folks, I have finally come up with a metaphor. I gently ask them whether they would offer a similar “cure” to a person who had had an arm or leg amputated. Would giving up coffee or praying hard “cast out” that amputation? Would they expect the person they were advising so confidently to grow a new arm or leg?

    There are many possible pathways to developing the symptoms of narcolepsy. One of those pathways is the destruction of the hypocretin neurons in the hypothalamus. Once they are destroyed, they don’t come back again. Just as an amputee has lost a leg, foot, hand, or arm, people with narcolepsy have just as surely lost a tiny part of their bodies. And medical science has not come up with a prosthesis for that part of the brain yet.

    This education and advocacy business takes a lot of restraint at times. I breathe deeply and count to 10 almost as often these days as during the year my daughter turned 14. 😉

    • julie on November 25, 2013 at 7:12 pm

      Thank you, Saraiah! I love your metaphor. This is a great way to explain it. Also, your technique of counting to ten and breathing is fantastic! Your friend, Julie

  1508. Alanna on November 25, 2013 at 4:15 am

    “Well, my uncle’s-cousin’s-stepmother’s-hairdresser has a totally-different-but-sort-of-similar-if-you-cross-your-eyes-and-hum-disease and she is practically cured since she started eating nothing but vegetable proteins and watermelon. Have you considered your diet???”

    Ugh. You explain this frustration so well, Julie. Thanks!

    • julie on November 25, 2013 at 7:13 pm

      Lol – so very true, Alanna! I’m glad you can relate. 🙂

  1509. Amy on November 25, 2013 at 5:08 am

    Well put-as always! However well intentioned, people’s suggestions can be so infuriating! It’s hard when people try to belittle something that I have to struggle with every day.

    • julie on November 25, 2013 at 7:39 pm

      I agree, Amy! No one deserves to be belittled. Thanks for reading and commenting!

  1510. Robin on November 25, 2013 at 4:39 pm

    As always, Julie, you express the thoughts of some many PWN with grace and elloquence! I have always explained narcolepsy/cataplexy as a “sympton” of my destroyed hypothalmus, and of course there are the well meaning suggestions for repairing my brain.

    I’m going to borrow your line, because, like you, “I’m Not Looking To Be Saved” from a part of my life that is a large part of what makes me uniquely Me!
    Bravo!

    • julie on November 25, 2013 at 7:38 pm

      Thank you, Robin! Yes, please borrow this line! We deserve to feel proud. <3 Julie

  1511. sarah on November 25, 2013 at 10:01 pm

    Your blog has been such a stronghold for me. Two of my daughters (ages 18 and 23) have narcolepsy. I am a surgical nurse, and for years have been treated by most medical professionals like narcolepsy is predominantly laziness, malingering, and (willful) poor sleep habits, rather than the legitimate neurologic disorder that it is. I have felt extremely isolated and stopped discussing it with most everyone including my work colleagues, friends, and even siblings because so many of them seem to be too ignorant to be willing to learn the truth. Reading your book and connecting with your blog has lifted so much of the isolation. Thank you!
    PS And thank you also to the blogger during the “Dear Diagnosis letters” who wrote “Remember to tell your Mother it’s not her fault.” If I could take Narcolepsy from them and give it to me instead, I would tomorrow.

    • julie on November 25, 2013 at 11:10 pm

      Thank you so much for your kind comment, Sarah. Thank you for supporting your daughters with narcolepsy. I’m so sorry you have faced so much ignorance from others. I am glad my efforts can help. We are not alone. With gratitude, Julie

    • Jennifer on November 26, 2013 at 3:40 pm

      Sarah, I am so blessed to be able to touch your heart! My Mom lived so long thinking she did something when she was pregnant with me, it was such a relief to assure her everyday it was not her fault. Jennifer

      • sarah on November 27, 2013 at 2:58 am

        Jennifer,
        Like your Mother, I have considered and reconsidered every possible way that narcolepsy was somehow my fault. Then, I felt terrible for the years and years it took to figure out this elusive diagnosis. In hindsight, and armed with the knowledge I have now, it is all 20/20, and so clear. Finally, we are on the road to understanding and becoming empowered and perhaps (I dare hope) even transformed in remarkable ways by this uninvited guest into our lives called Narcolepsy.

  1512. Alta Hanlon on November 26, 2013 at 1:05 am

    I have always thought that narcolepsy was a neurological condition. When it comes to neurological things, my impression is that there isn’t much to do but take a drug for it. No quick fixes like no quick fixes for CFS.

    • julie on November 26, 2013 at 3:55 pm

      Alta – yes, narcolepsy is neurological with no quick fixes. We are on the same page about that. Thank you for reading and commenting, Julie

  1513. Roseanne Blum on November 26, 2013 at 4:55 am

    Wow! I can so relate! Thanks for writing this.

    • julie on November 26, 2013 at 3:56 pm

      I’m so glad you can relate. Thank you for your comment, Roseanne!

  1514. Kim G on November 26, 2013 at 3:11 pm

    As a parent of a child with narcolepsy, I thank you for articulating your feelings so well Julie. I do not have narcolepsy, but often feel they way you do from a guilt and shame standpoint…do I get him to bed on time, do I feed him the right foods, he will out grow it, how was your pregnancy, he is just being a boy, well the list can go on! We are not looking to be saved, but to be understood! Happy Thanksgiving!

    • julie on November 26, 2013 at 3:54 pm

      Thank you for reading and commenting, Kim! I can only imagine what it’s like to be a parent of a child with narcolepsy – thank you for supporting your son’s experience and raising so much awareness despite the sometimes “off” responses of others. Happy thanksgiving to you and your family. Your friend, Julie

  1515. Katie Callison on November 26, 2013 at 4:54 pm

    The people who have posted above pretty much covered it. Thanks for being brave and posting. This is by far the worst part of having narcolepsy for me, as I already feel guilty over nothing about 95% of the time.

    Keep speaking your truth! We are thankful!

    • julie on November 27, 2013 at 9:32 pm

      Thank you, Katie!

  1516. Ashley on November 27, 2013 at 5:30 am

    Julie-
    When and where is Sleep Walk 2014?

  1517. Katie Callison on November 27, 2013 at 6:16 pm

    The first quote already hit me in the gut (in a good way). Thanks for sharing!

    • julie on November 27, 2013 at 8:18 pm

      Thanks Katie! I think you’ll enjoy these a lot.

  1518. Gail Pean on November 28, 2013 at 3:39 pm

    Malcom Gladwell’s latest book David and Goliath explores the idea of disabilities giving one an advantage and courage if they do not break you. Read it and discuss it with friends. Happy Thanksgiving Julie and Alex! Follow your dreams and enjoy LA .

    • julie on December 1, 2013 at 8:13 pm

      Oh, that sounds like a fantastic book! Thanks for the recommendation, Gail! <3

  1519. Lisa M. on November 29, 2013 at 6:13 am

    I am so sorry I am finally giving my reply to this, but I SO understand. In essence, Julie, he was questioning your faith. I too went through this, with well meaning ministers. I had a cataplexy attack at church brought on by the microphones going off.. one minister tried to bring me out of it by slapping me.. from there it went downhill. When trying to explain what just happened, I was asked why was I claiming something on myself and someone else chimed in with she didn’t believe anything was wrong with me, that I was just seeking attention. This was followed by some kind of seance in which they tried to drive this attention needing sleep demon from out of me… they tried to heal me with the well if you have belief that Jesus Christ is your Lord and Savior and you ask for healing, you can be healed and if you are not healed, you do not have faith.

    *BLANK STARE*

    I was very hurt by their remarks, but I refused to be deterred from how God revealed this thing to me. I am a minister in training and I had done a good bit of research in regards to sickness and the Bible and the one scripture I studied continuously is in 2 Corinthians in which Paul talks about his thorn. It is my thorn and it is in my weakness that God can strengthen me so that HE gets the Glory on my accomplishments, KNOWLEDGE is power. If I don’ t claim this thing, I can’t walk in healing from this thing. An alcoholic cannot go to an AA meeting to get delivered from alcoholism without being able to claim, acknowledge and declare that he is in fact, an alcoholic!!

    Sickness is not from the devil and it definitely is not evil and does not require the driving out of demons. Praying for a healing will usually will not get you far, not that God can’t heal, because he can, but because healing is only given according to God’s Will. It may not be in your destiny to be healed.. one’s prayer should be in how they can be strengthen by it, pray to ask how to deal with it, pray to ask how to listen to your body, pray to ask God to talk to you and tell you what your limits are and THAT is how you walk in healing… it is more likely to be in your destiny to allow your sickness to strengthen you so that you are encouraging others in helping to deal with this disorder, which is what you have already done! If you had been healed, who would you have been able to help and encourage on how to deal with Narcolepsy?

    So the next time someone wants to tell you how you can get a Godly healing and question your faith due to a lack of wanting a healing, pose to them this question: If you were to tell a paraplegic how they can get a Godly healing and they prayed for that healing and still could not walk, would you dare tell them to their face that they do not have faith? That usually shuts them up.

    • julie on November 30, 2013 at 11:13 pm

      Hi Lisa,
      Thank you so much for sharing this thoughtful powerful comment. First of all, I’m so sorry that you had this experience with individuals questioning both your narcolepsy AND your faith. This is not fair. I love what you wrote about illness possibly strengthening you. Your perspective is so amazing.
      Sending big smiles and wakefulness your way,
      Julie

  1520. Stacia on November 30, 2013 at 6:29 am

    I have read this blog the day you posted it, but have been trying to figure out why Narcolepsy is God’s gift to me (as you have seen me post that question on the FaceBook groups).

    It just occurred to me tonight, that I too have experienced something similar to this by one of my very own best friends. When I was telling her about my symptoms, how severe they have gotten, to the point of memory loss (when I push myself through a sleep attack and carry on with brain fog), she replied with that I need to pray more and not let the devil take my memory away and make me sleepy…..

    I was amazed at her response! Yes, I have strong faith, but being a medical professional myself, some things are inevitable (thus a gift from God). I had to go a bit deeper into my symptoms, when they started, the sleep studies they did to diagnose me, etc. She still felt that I could go to God and be “saved” from his horrible condition.

    So, my thoughts was that she wasn’t very understanding of what I am going through and she wasn’t very open-minded to hearing what I had to say….

    So, with that, I can definitely say that having narcolepsy has taught me to understand others who may have such “invisible” conditions. Having narcolepsy has taught me not to be judgemental upon others, because they may be dealing with something much more detrimental. We don’t know what others are dealing with as we are not living in their shoes, their lives. Every single one of us are unique, including our Narcolepsy is unique to each one of us.

    Narcolepsy is a gift from God in that it teaches us Understanding, Patience, and Love among one another (in my personal opinion).

    Thank you for taking the time to read.

    ~Stacia

    • julie on November 30, 2013 at 11:10 pm

      What a beautiful comment, Stacia. Thank you so much for reading my post and finding similarities in your experience. I also feel that I am so less judgmental of others now that I have narcolepsy and know what that my struggles do not show on my face. I try to give others the benefit of the doubt. Thank you so much for sharing your thoughts here. Sending wakefulness and big smiles your way, Julie

  1521. Tineke on December 7, 2013 at 7:35 am

    Dear Julie,
    I am so glad I found you/your blog. I am diagnosed a couple of weeks ago and I am so relieved, I was thinking I had Alzheimer (like my father at a very young age). I am making (little) adjustments in my daily life (diet, daily rhythm) but most of all: I allow myself to live with the effects of the disease, I am aloud to sleep a few times during the day and when I go to sleep at night I know that the hallucinations will come – and I will die (my “theme” is that I feel life slip away out of my body). I still wake up afraid and confused, but I get myself at ease instead that my husband has to wake up and help me. At work I get a lot of support, I can work at home on a bad day or work at home in the afternoon to get some sleep. I have had the most funny advices but also some rude ones. Someone said to me: ” you don’t have Narcolepsy, because you don’t fall on the floor, sleeping” and a other “sweetie” told me that it is because I am fat. Now I have also have to fight a battle with my doctor (neurologist) because he wants me to start with Xyrem, but I first want to see what the changing of my lifestyle and the acceptance is doing for me. What I really like about you, you’re not a victim! You’re a hero! I was looking for support(groups) in the Netherlands (where I live – therefore my not so A like English!), but I seem to find only people who feel they are victims. Thank you for being so open and honest. I think of you with lots of love and support.
    Tineke

  1522. Nicole on December 8, 2013 at 4:00 pm

    This has been on my “to do” list for several weeks now. Even though the deadline has come and gone I still thought this was a worthwhile exercise for me to undertake. I graduate from University tomorrow and it has been a tough week for me so this was the perfect time for a reflection of this nature. Thank you for the prompt. x

  1523. Lori on December 13, 2013 at 7:47 am

    But, have you tried…LOL!
    I was at a family potluck one time & there were
    three types of broccoli ‘stuff’. My sister couldn’t
    believe I wouldn’t ‘try’ any. I told her, I’ve tasted broccoli
    and I don’t like it. Oh wait! Maryann uses Velveeta
    In hers, you’ll like it! LOL: I don’t like broccoli. Try it steamed
    with lemon pepper. LOL! I DON’T like broccoli!

  1524. Pat Dalton on December 17, 2013 at 3:16 am

    I just stumbled on your blog and wanted to say how much I admire you for your courage and advocacy. As a child and through my college years I was plagued by what I now understand was sleep paralysis. I never even mentioned it to a doctor, but it was terrifying when it happened. Once in a blue moon I can still feel the start of an episode, but have somehow managed to find some way to break out of it before total paralysis takes over.
    Although I have never been diagnosed with Narcolepsy, I do suffer from some serious sleep disorder – as part of my 26 year history with Chronic Fatigue Syndrome. When I am in a severe flare-up, I typically sleep 16 -18 hours a day! I can fall asleep anywhere when I am in a flare, but then also struggle with insomnia at other times. I would love to learn more about Narcolepsy. I am looking forward to following you. Thanks again for all you are doing for all those struggling with this strange disorder. Pat

  1525. Roxanne on December 19, 2013 at 5:11 pm

    Can you offer my guidance. My son was recently diagnosed with narcolepsy and it appears as though the school is punishing him for being sick. Rather than accommodate , they are going out of their way to schedule early morning tests, and multiple tests back to back, My current dilemma is that I am attempting to get extended time on SAT’s and they are insisting on psycho-educational tests which have nothing to do with narcolepsy. Can you reference some articles on the purpose
    school and testing accommodations for people with narcolepsy. Thanks

  1526. Adam on December 23, 2013 at 2:12 pm

    What a great article! I find that people really don’t understand Narcolepsy at all. As we both know, people think that it’s just being tired…. “go drink some coffee” etc. It’s really difficult being a 21 year old college student and having narcolepsy when I am just dead tired all the time because of our crazy schedules.

    But, I just wanted to say that I love this blog and I am thinking about buying your book because it seems great as I train for my first marathon in Pittsburgh in May!

  1527. Gail Pean on December 24, 2013 at 2:20 am

    Wonderful news in the world of neurological research. Your financial contribution has made a difference Julie. Keep fundraising for research!!

  1528. Laura on December 25, 2013 at 8:02 pm

    Wow…this post really made me smile with recognition. Thanks for voicing the thoughts of so many of us in such an eloquent matter. Cheers of ‘mind over matter!’ as I struggle in yoga class make me grind my teeth…and the ever-helpful observations of ‘You look tired!’ on bad days make me want to shout out ‘Thanks, you look ugly!’ I never do, but I momentarily amuse myself with the thought. Thanks for being such an inspiration and positive role-model for me, Julie!

    Hugs,
    Laura

  1529. Mo on December 26, 2013 at 4:44 pm

    Hear, Hear!
    I am gonna keep this short 🙂
    Think our prayers are needed to forgive these people of their ignorance 😉
    Hugs Mo

  1530. Gina on December 27, 2013 at 6:34 pm

    “We forget that difficulty is a part of life, and no amount of yoga, dietary changes, prayers or medications will make us immortal.”

    …and may I add… ***more perfect than you obviously already are!***

    I have an eye condition that does cause me to have to have to do things differently than others. It’s not visible to anyone, my eyes look fine. It took time but I learned to *hide* it but practicing things so often I can now do *most* things like everyone else. Why? Because everyone offered the same sort of lame suggestions. It took me years to figure out it really was there problem not mine and now I just tell them I’m half blind and move along. I take no more *suggestions* for *cures* because I know there is no *cure* and I don’t need fixing! EVERYONE should read your post!

    Thanks for sharing!

  1531. Jill on December 29, 2013 at 1:18 am

    You are so amazing!!!! Thank you Julie!!! I’m spreading word on FB and Twitter. You are amazing!!!!!!!

    • julie on December 29, 2013 at 9:38 pm

      Thank you for spreading the word, Jill! You’re the best. 🙂

  1532. Geraldine on December 29, 2013 at 2:10 am

    You are SIMPLY AWSOME! Thank you Julie!

    • julie on December 29, 2013 at 9:38 pm

      My pleasure. Thank you for your support, Geraldine!

  1533. Sable Harris on December 29, 2013 at 4:00 pm

    I think it is unfortunate that the scolarship is only for high school seniors. I was not diagnosed until I was 22 and had areadly quit college because of narcolepsy. Now that I am on medication I am back in college and a scolarship like this would help me out a lot.

    • julie on December 29, 2013 at 9:44 pm

      Thank you for your feedback, Sable. I think you are incredible for retuning to school now – what a great role model for overcoming adversity! I’m cheering for you.

      It’s our hope to expand the scholarship in the future, but we chose the high school senior limitation for this inaugural year to ensure that we can carefully handle all applications with proper care, given our current volunteer support. I hope you will join me in celebrating this important first step toward greater support for students with narcolepsy and recognize the generosity of those that are giving their time and resources to make this first step forward.

      • Sable Harris on December 30, 2013 at 6:18 am

        Juila,
        I definitely celebrate this with you. I have actually made straight A’s sice returning to school which has been a great achievement since I am in nursing school. I think one of the biggest issues is the lack of knowledge some people have in the medical community about narcolepsy. Most people know it is a sleep disorder but do not understand the complexity of the disease. I tell my story when I get the chance and I have many of my fellow students about the disease. I am excited the scolarship is offered! I support you and all of the volunteers. Once I have completed my education I will have the time to volenteer and hope I can help. You are such a great role model and I really look up to you.

    • Ly'Nae on June 30, 2014 at 4:02 pm

      When I saw scholarship for people with Narcolepsy I got excited. Then was disappointed to see that it was just for high school students. I am 44 and have gone back to school was diagnosed in my mid 30’s and about 4 years ago diagnosed with sleep apnea as well..

  1534. Lauren Hudak on December 29, 2013 at 7:39 pm

    Julie,

    Thank you for working to develop a scholarship for student’s with narcolepsy. I am a freshman in college and would LOVE the opportunity to apply for extra funds to support my education. I hope to see this scholarship opportunity expand to ALL student’s enrolled in college who balance their college demands with the challenges of narcolepsy.

    Thanks,

    Lauren

    • julie on December 29, 2013 at 9:50 pm

      Hi Lauren,
      Thank you for your comment and congratulations on starting college as a person with narcolepsy! You go girl! We hope to expand the scholarship in the future. It was important for us to start with a smaller pool of applicants to ensure that we could handle each application with proper care given our current volunteer capacity. We want this to be a successful and sustainable program, so we are starting small with the hopes to grow. 🙂
      Keep up the great work in school,
      Julie

  1535. Ashley on December 29, 2013 at 8:41 pm

    This is absolutely awesome! Kudos to Julie Flygare for unveiling such a great opportunity for high school students! I was diagnosed with Narcolepsy 3 years ago at the age of 25. The months before and after my diagnosis was extremely life altering. Much of my precious time was spent trying to put the broken pieces of my life and career back together. It is an absolutely wonderful thing to provide this opportunity to a high school senior who has already received a diagnosis and has proven that they can overcome challenges and adversities as well as demonstrate courage and hope being a young adult with narcolepsy. I believe the Jack and Julie Narcolepsy Scholarship is well fitted for a deserving high school senior who wishes to pursue a college education. At age 25, during the time my symptoms peaked and I received my diagnosis, I was taking online classes to further my education and pursue my dream to get a masters in physician assistant studies. I was juggling a family life, a full time career, and part time college classes not knowing I was about to get the diagnosis. As a result, my 4.0 college GPA dropped drastically after receiving a semester of poor grades. I decided that furthering my education would have to be re-evaluated after I learned how to be successful at dealing with the adversities of simply being a person with Narcolepsy.
    ~ Good Luck to All Jack and Julie Narcolepsy Scholarship Applicants~

    • julie on December 29, 2013 at 9:53 pm

      Thank you for sharing your experience, Ashley. I’m so sorry to hear you were diagnosed in your mid-twenties, while balancing school and other responsibilities. You are overcoming so much adversity and deserve to be very proud of yourself. I know what it takes, and much of the challenge is visible to outsiders, but I’m cheering for you. Big smiles sent your way, Julie

  1536. Arnold Gendelman on January 2, 2014 at 5:04 am

    Julie….YOU MAKE ME SMILE……
    Great work by a super great human being….YOU !
    Love it,
    Arnie

    • julie on January 6, 2014 at 7:51 pm

      Thank you so much, Arnie! It’s been a very rewarding cool experience.

  1537. Jill on January 4, 2014 at 3:05 am

    I read his “Man Who…” book as well as “Seeing Voices”. Fascinating!!! 🙂 So happy for you!

  1538. Jill on January 4, 2014 at 3:08 am

    Here’s to another amazing year Julie! Thank you for all you have done for us Narcos! 😉

    • julie on January 6, 2014 at 7:50 pm

      Thank you so much, Jill. It’s my pleasure.

  1539. my my on January 4, 2014 at 4:22 am

    Never known why, but I always had a secret feeling inside that I just didn’t like yoga. Maybe it’s me, maybe it’s the “yoga people” (like my sister, who still thinks I’m just “lazy”), maybe it’s because yoga is the most evil force of balanced stretching known to the world. Ha! No, no, I’m kidding, I say “hurray!” to anyone who likes it and gets something good out of it. But for a person to suggest that it may cure your illness…that is just such an unbelievable and atrocious boof. The person should be embarrassed they wasted their mouth on saying such stupid words. I have a friend who was born with no legs. I wonder if anyone ever suggested yoga to her as a way to sprout them back afresh…Oh, of course not, they wouldn’t dare!
    I am in the process of confirming a diagnosis of Narcolepsy; it’s either that, my sleep doctor tells me, or “Idiopathic Hypersomnia”, which I like to call “Narcolepsy Lite”. But I’ve found, in reading for hours (and sometimes falling asleep for hours, sitting upright at my desk :)) that the chances of me NOT having Narcolepsy (with Cataplexy, Paralysis, Hallucinations, Confusion, Sleep Attacks and many of the other trimmings), when I witness how the parallels pile up between medical descriptions of symptoms and those hundreds upon hundreds of moments and elements of my life’s history (since at least the age of 5), well, the chances that I don’t have it seem about as good as the probability that I might be a frog. A beautiful, sleepy frog…
    This process has been so odd, so confusing, so maddening, so saddening. I miss the “good old days” when I thought I had non-causal depression. Now I can feel that what I have is a true grief inside of me, and I’m walking on a floor that I lived for years believing was my ceiling. My life has not been turned upside-down, it has been right-side-upped, but the turn is just as strong, if not stronger, knowing that I never knew what I always knew.
    I just want to stop here and say, I am grateful there are blogs like this for me to stumble across, because without them I don’t think I’d ever stop stumbling. Or, at least, I don’t think I’d stop stumbling without the presence of this giant raincloud of misunderstanding as my permanent companion. You are ALL raincloud murderers for me, the best murderers there are, and you deserve star-filled ribbons for the work of your words. If anyone asks you what you accomplished today, you may easily now say, “I helped heal an old girl’s heart.”
    In reading this post, when I saw the part about crying in the car, I felt like my heart’s response alone could be definitive proof of my Narcolepsy. (Or N-Lite!) The more I read, and see online, the more I am crushed when I realize that something I used to think of as “just who I was” might be as real and serious as those disabilities which are accepted, more visible, and less vilified.
    Thank you: All of you, for slumbering on ahead of me and making this path to help me find my way. Perhaps you don’t know, but you make something so very hard just a little bit easier for me. I don’t know what I would do if I was alone in the world, searching through microfiches in the library, reading yellowed pamphlets at the general practitioner’s office, or depending on the odd article in a medical magazine to try to figure this out. Instead of getting a grasp on this at the edge of age 38, I’d have to wait a few more lifetimes. But with your presence, I might have the chance to do SOMETHING in THIS LIFE!!! I am so excited, I could sleep it into the ground.
    Like I said, I’m still not officially diagnosed; but when I am, could I be in your club? I’m pretty sure I would fit in here…unless I am just “lazy and crazy” as I used to believe. But the chances are good. I can type and keep minutes and pay all my membership fees on time. I have a chihuahua who will bark if anyone falls asleep at our middle-of-the-day parties…
    XOXO,
    your dream-friend.

  1540. Erin Blitz on January 4, 2014 at 5:53 pm

    Im roaming home! 🙂

  1541. tam kozman on January 4, 2014 at 9:35 pm

    AMAZing, Julie! Huge congratulations and many, many thanks!!! 🙂 <3

    • julie on January 6, 2014 at 7:50 pm

      Thank you so much, Ms. Tam. Hope to meet you soon!

  1542. Sara Kowalczyk on January 6, 2014 at 3:43 am

    Julie, what amazing accomplishments! I’d be happy with a handful of these so I have been both inspired and exhausted by seeing them all together. You have woken me up, literally, and energized me, so continue doing whatever it is you have been doing in 2013. I anticipate more dreams realized for you in 2014, and I can’t wait to read all about it. Thank you for being a constant motivator and moving force.

    • julie on January 6, 2014 at 7:50 pm

      Thank you for your support, Sara. It makes me tired to see it all listed together too. You are an inspiration to me as well. Here’s to a great year ahead. -Julie

  1543. Melanie on January 9, 2014 at 4:38 pm

    “By insisting on easy solutions, my experience feels invalid — narcolepsy is somehow in my control or my fault. This makes me feel ashamed and guilty…. This shame is worse than any illness. This self-guilt is more toxic than any disease.”

    How these words resonate with my tired mind! No, I am not lazy. No, I am not unmotivated. No, I do not need more Vitamin C or red meat. It is difficult enough to fight one physical aspect of my mind, let alone the emotional impact of it, as well. Everyday, I must remind myself that this disease is not a personal failing and that I don’t need the layman’s conceding diagnosis to accept myself.

    Thank you for reminding me that I — no, we — are not alone.

  1544. Bri on January 10, 2014 at 8:40 pm

    Hi Julie,

    Do you know if it’s possible to participate in the study of you’re not able to travel to Boston?

  1545. Carrie-Ann Burns on January 11, 2014 at 4:03 am

    I can’t wait to get mine!! Even though i am in Canada i had a USA Friend of mine order me one and is shipping it out to me!!

    I know that Julie has something possibly set up for all you International Non-USA Residents! Maybe ask her for the info about it! 😀

  1546. Carrie-Ann Burns on January 11, 2014 at 6:53 am

    This is too amazing!!

  1547. Dawn on January 14, 2014 at 4:55 pm

    What a wonderful post! I love how clearly you explained that when others offer potential solutions it feels like they are invalidating your experiences. But my favourite was “Your feelings about illness may not match my feelings” I love this sentence so much because it’s so true about so many different diagnosis people can potentially have. While not related to Narcolepsy, I know that I often am given sad looks and sympathy when someone first finds out that both my sons are Autistic, but I embrace who they are, exactly as they are. I am not looking to “fix” them because they are not broken. Just as you are not looking to be saved, you are simply looking to be accepted as you are.

  1548. Gina Hieb on January 14, 2014 at 6:40 pm

    Thank you for writing this book and sharing your story. My daughter is 5 years old and was recently diagnosed with narcolepsy with cataplexy . Being able to understand better how she may be feeling by reading your story was so helpful.

    • julie on January 15, 2014 at 9:51 pm

      Gina, I’m so sorry to hear that your young daughter was recently diagnosed with narcolepsy with cataplexy. Your support of her experience will make such a huge difference. THank you for checking out my book and website! Thinking of you and your daughter, Julie

  1549. Arnold Gendelman on January 15, 2014 at 3:53 am

    Our Champion Warrior leading the charge, success in every battle…Julie you are the greatest.
    Keep up the fight and take no smoke from idiots making fires in dry woods.
    You always make me smile.
    Arnold

    • julie on January 15, 2014 at 6:25 pm

      Thank you so much for your support, Arnold. It means so much to me. 🙂 Your friend, Julie

  1550. Christy Correll on January 15, 2014 at 7:03 pm

    Hi Julie! I tried to log in to the webinar with my Gotomeeting registration link about 5 minutes late and it was full. Do you know if a recording will be available online? Or do you have a similar webinar available online to watch? Thanks for doing such good work! 🙂

    • julie on January 15, 2014 at 9:50 pm

      Christy – I’m so very sorry for everyone who tried to attend and were told it was full. Over 1,500 people attended, which created some technical issues for the organizer. There will be a recording available online and I will share this as soon as possible. Thank you so much for your support and patience!

  1551. Tammy on January 15, 2014 at 8:51 pm

    I’m a mom with narcolepsy (and fibromyalgia, yeah!) on disability and have a 19yr old daughter with narcolepsy. She also has been diagnosed with BPD and battles with self-harming. She is currently a freshman at Thiel College majoring in psychology to help others like herself. My question would be scholarships for students already attending college?

    • julie on January 15, 2014 at 9:43 pm

      Hi Tammy, thank you for your message and for supporting your daughter’s experience while also living with narcolepsy and fibromyalgia yourself. Right now, I am not aware of any other scholarships specifically for students with narcolepsy. I believe the Jack and Julie Scholarship is the first of it’s kind and for right now, it is limited to high school seniors only. We hope to expand but we also wanted to start out small to make sure we could do this right. Thank you for checking out my blog. -Julie

  1552. Felicia on January 17, 2014 at 10:44 pm

    Giving a shout out to all of my fellow people with narcolepsy in Connecticut. Would love to get together sometime and discuss what doctors are the best to see as well as best practices for managing narcolepsy.

  1553. Mike Fitzgerald on January 18, 2014 at 3:21 am

    I’ve read your book and have been reading various posts you’ve written for some time but this one hit me right between the eyes! I’ve been thinking as I read, “why can’t I express my thoughts as clearly?”
    Then I read about these 16 signs – OMG! I was only diagnosed 2 1/2 years ago but have been struggling trying to figure this all out for at least 15 or 20 years. I had no idea sleep deprivation manifested itself in so many ways, so much like me. I guess even having an invisible disease doesn’t necessarily make me see it a whole lot better than people who don’t have such ailments. This is a huge revelation for me. I look forward to meeting you at the NN convention in Denver. I would love to share some of my story if time allows.

    • julie on May 22, 2014 at 2:25 pm

      Thank you so much for reading my book and this post, Mike! We are making revelations together about our experiences – isn’t it fun? 🙂 Sending wakefulness and big smiles your way, Julie

  1554. Robert on January 20, 2014 at 7:14 am

    I just found your blog today and I’m very excited about what is going on here. This was a great post. When I was first experiencing symptoms that were significant enough to diagnose, I was originally told I had mild sleep apnea that was running my sleep cycle. Its funny, but the c-pap seamed to actually help at times. Since then, I have tried many different methods of treatment.
    Like you, I have come to accept that narcolepsy is part of me. Being diagnosed was almost refreshing. I could explain what was going on even when others around me were clueless or even thought I was just lazy.
    Its 2am and I just woke up from a nap. I feel energized and I’m taking advantage of my energy. I’ve embraced the randomness of my schedule and I make the most of every moment.
    Thank you for your very encouraging posts!

  1555. Hersholt Ford " on January 20, 2014 at 11:47 am

    Hi Julie,
    Thank you for Making us PWN to not feel alone.. Last week when I discovered your links… I was feeling very much alone again. I was diagnosed the first time in June 2001 after collapsing at a Church Youth Camp… I was taken to a hospital in Columbus, Texas. They ran all kinds of tests that week, and released me on Friday with Seizures, with instructions to see my GP so that he could refer me to a Neurologist. I saw my Dr. as soon as I got home. Our daughter lived in Dallas and came to Columbus to get my wife and me. My Dr. continued
    to treat me for seizures until later when I went to LSUHSC emergency in Monroe La. He had found that the quickest way for me to see a Neurologist, was to check into ER.. I registered at the desk and was in a long waiting line, when I had another Cataplexy Attack..They put me in Triage from 8am until 11pm. At
    11pm, a black Dr. came in my room and said, Mr. Ford, we have been observing you all day. You are not having seizures, it could be several things, I was admitted went through several more test and referred to Dr. Andrew Chesson a Neurologist at LSUHSC. for October 2001. After arriving home, I called my brother Acie in Memphis and he told me to look up Restless Legs Syndrome..My wife did and while she was looking she briefly read about Narcolepsy and she stopped there and said this describes you. Remember in December 1966 when you were in the Osteopathic Hospital after hitting that telephone pole and Dr. Freiberg said that he thought you might have a rare condition. I went to my GP
    the next day. Dr. Michael Smith treated me with Provigil until I met with Dr.
    Chesson.
    Anyway, I join you in Narcolepsy Awareness and I would like your help to
    organize NARCOLEPSY AWARENESS IN BRANSON, MO. My Daughter,
    Cheryl Ford and I have directed MS Walk in Branson…I have personal friend who is broadcaster at local Radio Station…Please send me necessary materials for this,,, I would like to do the NA walk this spring or early summer….
    Sleepy Preacher
    Hersholt Ford

  1556. tam kozman on January 27, 2014 at 7:01 pm

    Those are fascinating triggers, Julie! Before Xyrem, my big trigger was always ‘synchronicity’; the sensation of a ‘meaningful coincidence’. Lois Krahn of the Mayo Clinic has written papers, one called ‘Narcolepsy – A New Understanding of Irresistible Sleep’ in which she says that cataplexy provides a rare instance of a window where we can observe the interaction between mind and brain, and one called ‘Characterizing the Emotions that Trigger Cataplexy’.

    The Narcolepsy UK site used to have a list of potential triggers; one was ‘response to a call for action.’ I literally fell off my chair when I was asked to serve on the Board of Trustees for the Narcolepsy Network… Another was ‘attempt at repartee’ – used to happen all the time.

    • julie on January 27, 2014 at 8:11 pm

      Tam – thank you so much for sharing these additional resources. I will have to check them out! You’re the best. Your friend, Julie

    • makaylah on May 31, 2014 at 12:49 pm

      i glanced and you said before Xyrem, my doctor is always talking about it but i wasnt %100 sure how it will work or anything about it and on what the internet says my moms skeptical of it, i was just wondering if it really helpped, like is this going to be my life changer next may? i turned 17 yesterday so 364 days left till i can be on it but i was just wondering if it made a big impact on your symptoms and such.

      • Tam Kozman on February 21, 2015 at 8:20 pm

        I’m so sorry I just saw your questions! Of course you can never know exactly what the actual effects will be on you, so I hope you can have a good talk with your doctor. For me, it makes all the difference in the world with my cataplexy.

  1557. Ann Sciabarrasi on January 27, 2014 at 7:41 pm

    I also find extreme heat and ” strangers” to be triggers. I relate it more to social anxiety. Lightning is a definite trigger. Also, I find that adrenaline is my enemy. I avoid anything that involves speed, like downhill skiing or ziplining…too many unexplainable (before diagnosis) accidents in the past. Barking dogs drop me to the ground. Once I start with the list I feel like Monk listing his obsessions! Definitely makes life interesting!

    • julie on January 27, 2014 at 8:10 pm

      Ann, these are such interesting triggers too. I have branched out to try some things like trapeze and water-skiing recently, but I was definitely fearful of these high-adrenaline moments with cataplexy… THank you for sharing!

  1558. Chris W on January 27, 2014 at 8:06 pm

    Fascinating! I am right there w/ you on w/ the minor daily cataplexy, but also with the major issues associated w/ winning, annoyance, and anticipating my own humor. They get me almost every time. Also, I struggle more often than not when I’m networking w/ a professional or asking an academic question to a professor. I think it has something to do with me trying to prep and filter my statements or questions before I ask them. I end up off balanced, slack jawed, and w/ a heavy tongue. It’s nice to know I’m not alone.

    • julie on January 27, 2014 at 8:09 pm

      Chris, that’s so interesting about asking an academic question to a professor. I wonder why… All of it is so fascinating to me. We are not alone. Big smiles sent your way, my friend.

      • Annie on January 28, 2014 at 3:05 am

        This happens to me too! I had an attack while I handed my math professor the letter from disability services last semester. When I gave it to him, he didn’t even look at it-expecting me to tell him all about it I guess. I completely froze in the nervousness. It was my hardest class, not because the math was difficult, but because every quiz was based on memorization and no calculators were ever allowed. I was constantly anxious in class, worried that he would call on me like he did to other students and so when I had to walk in his office and talk to him, it just came out in incoherent slurring, me leaning on a desk so as not to show how unsteady I was. I agree with Chris that part of it is the anticipation of what they could say/possible responses. Not just with professors, but mentors, even doctors. People I look up to, I typically have trouble talking to.

  1559. Tom Jackson on January 27, 2014 at 8:06 pm

    Eating in public
    Holiday excitement
    Excitement plus stairs (running up stairs with good news – I invariably crash and burn).
    Stage fright moments – center of attention at any public gathering has resulted in several memorable falls.

    • julie on January 27, 2014 at 8:08 pm

      Wow, how interesting, Tom. Thank you for sharing. Mind the stairs, my friend!

  1560. Caroline Trespel on January 27, 2014 at 8:20 pm

    Thank you Julie! This list is so validating – specially #3 and your “minor cataplexy daily – knees buckling, jaw slackening, eyes fluttering or hands trembling”. When I listed these same experiences my sleep doc looked confused and dismissed them.

    • julie on January 27, 2014 at 8:41 pm

      Thank you, Caroline! Aw, the “confused sleep doc expression”. I think we’ve all seen that expression a few times! Sadly, doctors aren’t as familiar with narcolepsy and cataplexy as they should be. Please consider sharing my infographic with your doctor, it points out each area of the body that may experience minor weakness with cataplexy, while also showing what a full-body attack looks like: https://julieflygare.com/narcolepsy-infographic/. Big smiles, Julie

  1561. Darren on January 27, 2014 at 9:05 pm

    Hi, I was diagnosed with narcolepsy and cataplexy at the age of 20 and I am now 37. It’s been good to find this site and several people In a similar situation. The cataplexy is better now I have medication but I still get it if I want to pass on a funny joke. If I have a bad nights sleep the following day can be difficult and I do Feel more exposed in temps of cataplexy so try and avoid emotional situations.
    Thanks,
    Darren

  1562. Amanda on January 27, 2014 at 9:16 pm

    YAY! I’m glad I am not the only one that has trouble killing spiders. HA HA!

    I continually find ways to work the triggers out of my life, only to have them replaced by new ones. Not that the old triggers would no longer cause cataplexy, but I no longer attempt those activities, like water slides or haunted houses. HA HA. My current triggers include carrying items up and down the stairs. Going down is worse than coming up and carrying a child is worse than carrying a box. An odd trigger is the scanner at work. I get flustered when it sucks in a page faster than I am ready with the next page and I end up fumbling the pages all over the floor. Sex is a trigger, but luckily it hits afterwards. Also, when someone asks me to answer a question that I SHOULD know the answer to but for some reason have forgotten, my tongue gets tied and I start to flub the answer and sound like a moron. If I start to pick up my kid and they begin to thrash about while throwing a tantrum, I have to immediately put them back down…. there are more that I can’t think of at the moment. Mostly involving my kids. HA HA.

  1563. Sarah Elizabeth on January 27, 2014 at 9:19 pm

    You should do a sort of the pictures into their respective states/countries. You map shows that there are people from my home state (also the country I hope to be moving to some day) that have narcolepsy, but I’ve never met anyone who lives near me that has it!

  1564. Richard Wynne on January 27, 2014 at 9:24 pm

    Julie, your number six is my biggest trigger. Oh, Lord, please don’t let me think that I’m funny! I’ve even gone cataplectic from just THINKING about telling a joke that I thought was hilarious, so I wasn’t able to actually TELL the joke to anyone.

    I’ve found myself immobile on the floor after trying to read a paragraph from a Dave Barry book to my wife.

    My wife is a fourth-grade teacher. One evening several years ago, she left a template for a quiz she was writing up for the kids in the living room. I saw it and decided to start writing down funny answers to her questions. Amusing myself to no end, I ended up cataplectic in a recliner chair with the back of my head slumped over the back of the recliner in such a way that I couldn’t breathe. My wife was upstairs, so I was a bit of a bad state when I could finally move.

    It’s interesting that just thinking about funny things is enough to trigger all-out attacks. As a downhill skier, I have to be really careful on chairlifts. Seriously.

    A new trigger: I was in a board meeting (the members of the board are my bosses), and was asked a question that I was not anticipating. It resulted in my head hanging down for what seemed like a year. I think the board members thought that I was just deep in thought (at least I HOPE that’s what they thought). Unfortunately, when I was able to sit erect once again, I didn’t have an answer to the question…

  1565. Carrie on January 27, 2014 at 10:58 pm

    Laughing at my own jokes or witty comments is by far the most common trigger. Anger and fear, which unfortunately sometimes happen at the same time during arguments make for the most severe, complete and long lasting attacks. Feelings of deep caring when I see an old friend I haven’t seen for a while have made my knees buckle, and nearly always effect my eyesight, face and neck.

    Quick, deep annoyance can cause facial and neck attacks. Had one in a skating lesson I was teaching not long ago. The skater wasn’t changing what I was asking her to adjust and had an attitude like she knew better than me how to get it done. I looked at her and said, “if you seem to think you know better than me who has been coaching for over 20 years, then you keep doing it that way.” By the end of the sentence I couldn’t see her anymore, my head fell and knees buckled. I know I had a voice of being possessed too. You should have seen the look she and her sidekick gave me! They had no idea why my eyes looked so funky or why I likely slowed my speech so much, but they certainly haven’t messed with me since! Cataplexy apparently possesses a certain amount of intimidation power! 🙂

    Julie your list is a great one. Can’t wait to read more responses from others! Such a cool symptom! (I have a love hate relationship with Cataplexy!)

    Take care! Will be back in the land of the living soon!
    Keep in touch
    Carrie

  1566. Katie Ratcliffe on January 27, 2014 at 11:14 pm

    Thanks for sharing your cataplexy triggers, Julie! What perfect timing! Today our vet hospital was visited by a welcomed stranger: an opossum searching desperately for food near our dumpster. She was very thin and dehydrated from the abnormally cold weather, so we brought her inside for treatment, heat, and a meal. (If anyone’s brain went straight to “Rabies!” I assure you the likelihood in this case was minimal, and both myself and our wildlife tech have been vaccinated). Sure enough, after a few seconds of sitting on our treatment table, she was OUT! Wow, did that hit home!

    The “playing dead” analogy of Cataplexy as a protective mechanism, in my under-qualified opinion, doesn’t quite fit. Our opossum did go limp, but her gums and mouth turned pale, too. “Playing dead” seems to be more than just muscle paralysis. It appeared to be a physiologic reaction that actually redirects blood flow, and probably effects other body systems as well. Also, the second we put food in front her she voluntarily(?) snapped out of it and woofed down that meal faster than I’ve ever seen an animal eat! If Narcoleptics could snap out of cataplexy voluntarily and instantaneously, it wouldn’t be as big of a problem.

    I’d love to learn what cataplexy can teach us about sleep. I don’t have experience full-body cataplexy, but definite weakness. My triggers: Laughing causes me to drop things, usually glasses (thank goodness for plastic cups!). Anticipation, when playing a game and “Yay! my turn is next!” The biggest trigger is extreme excitement that catches me off guard. My legs went weak the 1st time I was asked to assist in surgery (needless to say, I didn’t assist – try explaining to a surgical team that you’re not “woozy” from the sight of blood, but very excited to learn – from the floor, sitting down…lol!).

    • Chelsea on January 28, 2014 at 9:54 am

      Upon reading your comment on how the opossum snapped out of playing dead instantaneously upon putting food in front of her…made me think, that’s am idea! I should ask my husband to put chocolate cake in front of me to see if I snap out of it (cataplexy)–and then I got tickled and thought it was such a clever thought that it actually caused cataplexy. Dammit! I can’t think of witty remarks without cataplexy!!

      • Katie Ratcliffe on January 28, 2014 at 8:27 pm

        Hah – interesting thought! Food is one of my biggest motivators, too. Some say snapping out of it is voluntary in opossums, and others say time is a factor before opossums can regain use of their muscles. So it’s possible the food was a trigger that snapped her out of it – or perhaps coincidence (doubful). I do find it interesting that they are fully conscious during “playing possum” or feigning death, but after doing some reading it seems their heart rate and respiration slows, etc. I haven’t had cataplexy to the point of complete, full body paralysis. Does anyone feel like their heart rate and respiratory rate slows with severe attacks?

  1567. Ashley on January 28, 2014 at 12:39 am

    ANGER induced adrenaline- I have always been someone to argue whatever I felt was right. Once I started experiencing cataplexy I could no longer be apart of a heated debate. Cataplexy takes control of my ability to speak and I literally began to choak. EMBARRASSMENT. ORGASMS. FEAR. ANXIETY. STRESS.
    I believe the new ICD 10 coding in medical billing only recognizes cataplexy if it’s brought on by laughter /joking. Julie…anybody, am I right about that?

    • julie on January 28, 2014 at 1:03 am

      Ashely – very good point.

      I believe that the new International Classification of Sleep Disorders will list “positive emotions” as the main trigger for cataplexy. I corresponded with a researcher who was working on the ICSD revisions and shared my opinion that saying “positive emotions” was pigeon-holing our true experience and that it would not help awareness or diagnosis issues. In my opinion, its a wide range of emotions that cause cataplexy and by specifying “positive emotions” it is more likely that a doctor will miss a narcolepsy with cataplexy diagnosis if the patient describes negative emotional triggers.

      This is actually what inspired me to write this post. I hope that in the future, patient advocates have a seat at the table in developing definitions.

  1568. Mike on January 28, 2014 at 1:53 am

    My C is minor but being startled elicits weak knees every time. Don’t know if it is C or not but when anger gets the better of me I absolutely cannot get coherent thoughts out of my mouth. A-D’s keep the emotions pretty flat and that helps keep it to a minimum.

  1569. Melanie on January 28, 2014 at 1:53 am

    I must say it’s comforting to know others expierence cataplexy as well with out extreme emotion. Mine mostly happens when I’m really concentrating on a problem and trying to come up with a solution. Which wouldn’t bother me but it mostly happens when I’m in meetings at work. Another trigger is from sex. 🙁

  1570. Hilary on January 28, 2014 at 1:58 am

    Great topic Julie!

    I agree with some of yours and would add the following for me:
    anger/frustration (scolding my kids)
    embarrassment- I get cataplexy when I’m embarrassed for someone else
    laughter (full body attacks if I’m laying down)
    being a smarty pants or being sarcastic
    and another huge trigger for me is adorableness- whether it be a precious baby or a cute story, adorableness will leave me speechless and wobbly every time!

  1571. Pam Bambeck Sabourin on January 28, 2014 at 2:01 am

    Hi Julie, such a great topic. When I was first diagnosed with N, I said I did not have C! Little did I (or my doc know then). I believe this is such an important topic because C affects our lives in so many ways. Physically, of course, it can be very dangerous, but I never really experienced that, except some knee-buckling. Also, ( I mention on fb comment)playing tennis at net I was hit by the ball several times (I could not react fast enough) so that sort of “paralyzing affect” can also be dangerous. So I quit going to net, and eventually quit playing tennis, which I loved. I also went through YEARS of counseling …..one subject including WHY I would not stand up for my self in social and professional situations…..(I was told “you obviously will avoid confrontation of any sort at all costs!”) And I am an Aries! All of this eventually made sense when I was diagnosed with Narcolepsy (and eventually, with Cataplexy). It has taken a long time to undo all of these self-protection skills I learned over the years.
    Thanks to people like you, doing great work, people now can get early diagnosis and learn to deal with N and C in a positive way, and not have to unlearn!!! Thanks to you.
    Most of my C manifests in my head, throat area…..I can’t speak, can’t cry, can’t smile….etc.
    Ok, My current list:

    1. Surprise of any kind!
    2. Yes, Killing bugs, seeing snakes….
    3.Grief- freezes me
    4.Jokes, laughing (I always sit down to enjoy a good joke now!)
    5.Sex (most definitely, when I used to do that!)
    6.Anger
    7. Anticipation
    8.Being tired, needing nap or not rested.
    9.Running into someone I really like after a long time of not seeing them
    10. Running into someone I really do not like after a long time.

    Thanks for this…..very interesting. I think I have learned to manage my sleepy times better than C. And now we have added this to the conversation for an even better quality of life!

  1572. Pam Bambeck Sabourin on January 28, 2014 at 2:06 am

    Tam, yes, forgot about the “synch” one! Me too! Can you send links to those papers from Mayo, or will you, Julie?

  1573. Jen on January 28, 2014 at 2:06 am

    Love to hear all the responses. I also do not experience full-body cataplexy all the time but weakness. It is triggered with many different emotions. Definitely laughing, jokes, watching TV (America’s Funny Home Video’s) is one of the worst. Exciting news – I cannot tell someone something I am so excited about until I am calmed down. Discipline, and anger. When my daughter was young, I would try to discipline her and I couldn’t. If I am really tired, I cannot hold anything in my hands, I drop everything. Playing games from playing catch, throwing darts, playing horseshoes if I score, I go down. The more everything talks about it, the longer it takes for me to recover. I usually do not play any games around people. Its hard, but as my husband tells me… I am one of a kind, and guess what I love it!

  1574. Kathy on January 28, 2014 at 2:34 am

    Very interesting and helpful to know. You manage this so well Julie.

  1575. Annie on January 28, 2014 at 4:23 am

    Cataplexy things: typically, slurring/face drooping, stumbling/wobbly, losing my grip, posture lowers. Sometimes, shivering/shaking along with unsteadiness, knees buckling, feeling the need to just let myself sit/lay down-having trouble getting up, eyes fluttering and not focusing correctly. Haven’t yet but worried about: full body collapse.
    Common triggers
    -kissing my boyfriend and then trying to walk down the stairs…
    -seeing and anticipating seeing someone I don’t want to see/have been avoiding
    -surprises-even small ones like unexpected noises or responses I didn’t expect
    -verbal questions I can’t answer/weighted questions that are emotionally charged
    -contentedness/quiet happiness (this episode is usually subtle, like slurring or losing my grip)
    -confrontation, especially yelling–I lose it, shivers/loss of balance, confusion, slurring
    -extreme temperature hot+humid/cold+windy

  1576. Amy Chapman on January 28, 2014 at 7:36 am

    This had me in tears! My symptoms started at 5 but diagnosis wasn’t until 14. I went through most of school undiagnosed. I dropped out in the beginning of 9th grade and graduated a year late. My school years were pure hell. I am so so happy Makenna was diagnosed early! And how wonderful that she is already educating her community about narcolepsy!!! Cheers for her and her family!!!

  1577. Kourtnie on January 28, 2014 at 4:48 pm

    Anyone notice certain people trigger attacks??? I have a person who makes me a cataplectic mess!!!! I don’t have any strong feelings towards this person so it’s strange!!!

  1578. stacie on January 28, 2014 at 8:02 pm

    I’m with you on all of those. checklist: did you take all your meds on schedule, did you eat , are you tired? I get like that when I miss a med dose or skip a meal. or don’t get enough sleep. If someone pinches me really hard, the pain breaks the cataplexy spell. tell someone to pinch you if you have friends or family around.

  1579. Lucy on January 28, 2014 at 9:40 pm

    I am absolutely us else’s at telling jokes as every time I crumple in a heap before I can get to the punch line!
    I was watching the news today and saw the footage of a baby being rescued from the rubble after an air strike in Syria. Within seconds I was out for the count. Tears of joy and amazement are unfortunately my weakness!
    Sarcasm, anger, humidity, curiosity, stress, surprises, excitement, BUGS (especially wasps..), excitement… the list goes on..

  1580. Adriana Bookout on January 28, 2014 at 9:50 pm

    Dear Julie,

    Congrats & thank you for all you’ve accomplished to raise awareness about narcolepsy.

    Wanted you to know, I feel terrible that I haven’t participated much over the last couple months. My boyfriend of 8 yrs, became ill with a virus that attacked his heart and is in need of a heart transplant. I’ve been spending much of my time educating myself about whats to come, how to fund-raise for expenses not covered, etc.

    I miss being in the know, but he needs me at this difficult time. He has been practically the only one who understands me and Narcolepsy, so its my time to ‘pay it forward’.

    I’ll check in now and then.

    Again, my hats off to Narcolepsy Awareness & you!

    Adriana Bookout

  1581. Shauna on January 29, 2014 at 1:31 am

    Hi Julie,
    Congratulations on the t-shirts being such a success!
    I’m wondering (and hoping, with my fingers, toes and eyes all crossed), if your hope to make the shirts available long term via another system, includes a plan to make them available outside the US? Please say it does…
    Shauna xxx

  1582. Jenn Saccone on January 29, 2014 at 6:30 pm

    I am still trying to figure out what is my Cataplexy or a symptom of another autoimmune illness.
    Nowadays, my “melting” Cataplexy waxes and wanes based on stress. And it wouldn’t be a particular stressful thing to set me off.
    When I found out one of my best friends had delivered her baby, my legs turned into gelatin. Thankfully, I landed in a pile of laundry.
    There is something about my Cataplexy that really worries me. I’ve had several injuries. I have a bad neck from laughing: the boisterous laughter I never held back prior to diagnosis caused my neck to fall forward, chin to chest; or if sitting, my head fell into my lap.
    Last year, I noticed I stopped laughing. Just stopped. I would find something funny and maybe smirk or say “heh.” Even when I’m alone. This has gone on for at least two or three years, and I didn’t even realize as I never tried to hide my laughter. To test this, I watched a DVD of “Happy Gilmore”. This movie makes me belly-laugh no matter what. Nope.
    In March, I go see my doc at Mayo Clinic. Now I must bring it up.
    Wondering what the heck is wrong with me.

  1583. Stacia on January 30, 2014 at 1:56 am

    Julie,

    My name is Stacia and I’m a sophomore in college. I started experiencing excessive daytime sleepiness in high school and was diagnosed in the summer after my junior year, but it’s taken me all the way until my freshman year of college to really sort out medications and feel like I’m in control of my life again. Like the experiences you talked about in your book, I too go through phases of being intensely thankful for the wonders of modern medicine and times where the thought of continuing to gag down that salty abomination seem downright depressing! My sleep specialist recommended your book to me and I ordered it right away. In fact, it just came in the mail today and I finished it in a matter of hours! Thank you so much for not being afraid to share your story, it made me believe that I can achieve more than what I think is possible!

  1584. Ashley on January 30, 2014 at 12:07 pm

    Can I still buy a shirt, Julie?

  1585. Jenny Miller on January 30, 2014 at 5:08 pm

    I am thankful to find your website, blog and book as I was looking for resources for my loving friend who really wants to know what life is like for me… She cannot be in my home for days at a time to really get it, who can ever really get it? My husband is the nicest person ever, so compassionate, and still, he can’t quite get what it’s like. And 4 of our 5 children have narcolepsy… I’ve only read the entry “Sleep’s Choice” but I cried and will have to find more time to peruse and read and buy the book and read. Thank you for sharing your story and speaking for those of us whom, during the ‘I can beat this” season of life, bit off way more than we can chew. But even so, I am SO thankful for my children and life and even this disability; I’d like to think my children have character and wisdom and compassion for others beyond their years and their over-privileged culture. In our home, one narcoleptic’s cataplexy triggers another’s and we fight and cry and hate it and succumb and get up to live another hour or event or day. I look forward to reading more AND HAVING MY SENIOR APPLY FOR THE SCHOLARSHIP and maybe attending a Sleep Walk Event. Best of Wishes to you!

  1586. Katie Ratcliffe (GetOversleep) on January 30, 2014 at 7:58 pm

    Julie, thank you for sharing this and for introducing me to yet another amazing person! (P.S. I just started Wide Awake and Dreaming and love it so far!)

    Dr. Colon, thank you for the kind words. It’s been a humbling and wonderful experience working with you to promote sleep health.

    You both have taught me a great deal about Narcolepsy, sleep health, and life in general. I am forever grateful for crossing paths with you both. Please keep up the incredible advocacy! 🙂

  1587. Julie Barfuss on January 31, 2014 at 6:20 pm

    This is fantastic! I am experiencing some really awful side effects from a steroid shot I had a month ago. I am only getting worse with time. I have narcolepsy and this past month I have been sleeping as well as when I had a newborn baby. There have been at least 3 different times in the past month that I thought I might be dying, but all my labs come back normal. (To be clear, I’m sleeping as well as having a newborn, but because of other issues the shot created I am not feeling well at all.)

    I went to 2 different doctors this week totaling 4 trips. It wasn’t until an hour into a discussion with my doctor on the 4th trip she said, “How is your sleep?” Of course I don’t blame her or anything. I think she is fantastic.

  1588. Ashley on February 1, 2014 at 7:14 pm

    I am ordering on Amazon now. When Wide Awake and Dreaming became available last December I couldn’t wait to get my hands on it. Thank you for sharing Julie.

  1589. kelli on February 3, 2014 at 1:13 am

    Oh my God! That happened to me. I wrote a whole post on my blog about it. When it began it was a flashing pulsing light and I was paralyzed and couldn’t open my eyes (I didn’t want to anyway because I was convince it was alien abduction). It was loud, like using semi trucks. The house felt like it was shaking and I could hear and feel the presence around my bed. It was terrifying. I figured it was from narcolepsy but I had no idea. Crazy. It is a small world after all!

  1590. Heather on February 3, 2014 at 5:21 pm

    Hi there,
    Our son has narcolepsy. He was vaccinated against H1n1, in February 2010 (in Thailand where we were living, care of the French Embassy/Government) and first developed symptoms certainly by the end of December 2010 if not before, (but we are unable to pinpoint exactly when). Our son had the ‘Focetria’ vaccination which apparently had a different adjuvant than the ‘Pandemrix’ vaccination. At first we were told there is no connection between the Focetria vaccination and Narcolepsy. We were also told that symptoms would have occurred within 3 or 4 weeks of having had the vaccination. I’ve since read that it’s NOT that there is no CONNECTION between the Focetria vaccination and Narcolepsy – it’s simply that there is NO INVESTIGATION into any connection occurring. It would appear that the vast majority of people vaccinated in Europe (or by European governments) were given the Pandemrix. In France 80% had Pandemrix, only 20% had Focetria or other. In Sweden, Finland & England 100% had Pandemrix. We have since been told that symptoms have been found to develop 7 months or more after the vaccination, which correlates to the onslaught of our son’s symptoms. I’m wondering if anyone knows anything about the Focetria vaccination and the adjuvant used in it? I feel there could be a connection, but that as so few people had this particular vaccination it is unlikely any connection will be made let alone investigated! Is it possible (given the relatively low figures even with Pandemrix: 2-3 people per 100,000 having received the vaccination now have narcolepsy who otherwise wouldn’t) that my son is the only one or the only one of very, very few who could have narcolepsy caused by the Focetria vaccination??! Your thoughts please? Is a connection impossible or is it just simply that it is always going to be statistically too weak an argument to bring this to the authorities attention / to instigate any research into a connection? If anyone has anything to add or any knowledge regarding this subject, thank you for listening and sharing. Heather

  1591. RENEE on February 3, 2014 at 7:36 pm

    Thank you so much for the information! My 16 yr old son was diagnosed with Narcolepsy and Cataplexy a few months ago and he has had to overcome many obstacles along the rode. He is now being treated and won’t let anything stop him from obtaining his dreams! Programs like this are truly a blessing!

  1592. Mary B. on February 3, 2014 at 10:53 pm

    I want to thank you for this information my daughter has Narcolepsy & Cataplexsy I have been looking and seeking info for myself she is grown and married but that does not stop me from trying to help her and understand it.
    Thanks a bunch,
    Mary B.

  1593. brittany axie on February 5, 2014 at 4:03 am

    Sable,
    I am 22 and jus have been digonsosed with narcolepsy. I have dropped out college too because of it. Trying to get it under control so I can go back to school and work. Im glad ur back in school. Gives me better hope. 🙂
    Julie,
    I think its awesome that u started this. Right on!!! Ur amazing.

  1594. Happy2BNappy on February 6, 2014 at 1:26 am

    I’m glad you put the comment in about not suggesting exercise. I remember the day I was diagnosed with narcolepsy, my doctor told me that what I really needed to do was to exercise for an hour around 4pm every day. When he said that, it told me that he had absolutely no clue whatsoever what it was like to be as sleepy as I was. He then prescribed Provigil, and told me that it was going to be amazing, it would basically fix my narcolepsy completely. Needless to say, I was unable to tolerate Provigil. Fortunately that doc retired and I ended up switching to a much better doc who was able to find a medication regime that was effective. I am now able to exercise regularly because of my effective treatment…but to suggest exercise as a treatment prior to relief of symptoms is absurd. BTW, I exercise because I like it, it really doesn’t have much impact if any on my narcolepsy.

  1595. jenny on February 6, 2014 at 10:23 am

    Thankyou for sharing your experience natalie. I have N with C I’m currently 5 months into my second pregnancy. My son is 20 months old..
    My first pregnancy was relatively easy as i wasnt working and i could nap when i needed… this time round i am constantly exhausted. I can barely leave the house. I cry all the time, i am suffering sciatica in my back.
    My partner thinks i am depresses but i know i’m just over tired.
    It upsets me knowing that my friends and family know my situation but none of them come to visit. Some people expect me to still be able to the same things i was doing pre-pregnancy.
    I will not be having anymore children. 2 children is plenty for a narcoleptic parent.. wishing you and your family all the best. Welcomebto parenthood 🙂

    • Natalie Kwadrans on April 9, 2014 at 4:29 am

      Jenny – congrats on your pregnancy! While it might feel hard now, hang in there. I didn’t have any family in within the province, and all my friends were working, so I also felt isolated. I relied very heavily in my husband for everything.

      Remember that this is only a temporary state you are in. Once the baby arrives, hopefully you will also feel better than you have in a long time.

      Let us know when you deliver your precious little baby!

      Natalie

    • Megan on August 30, 2015 at 5:30 pm

      Hi Jenny. My story is identical to yours. I’m due with number 2 in January. Any chance you live in South Carolina?:) would love to have a friend like me near me!

      • Julie on September 1, 2015 at 6:51 pm

        Megan,
        Hey my names Julie and I have narcolepsy. I am 21 weeks pregnant and due January 10th. I live in Campobello, SC. It is REALLY tough doing the pregnancy thing off my medicine (I normally take Provigil). I’m not working right now because I am sooooo tired ALL of the time. My husband is having a hard time adjusting to me being so inactive. He is being supportive though. I would love to talk to someone that understands. Do u live in SC?

  1596. Shannon Hall on February 6, 2014 at 7:59 pm

    I love that you are featuring this. I am a mother of girls 4&6 and have narcolepsy with cataplexy. I am thrilled that this issue brings another aspect to awareness with narcolepsy. The resources and connections to others were scarce when I was deciding to have children. It is so helpful to hear other stories for anyone planning or expecting children. As with motherhood and narcolepsy everyone has a story but it strengthens a community when you no longer feel isolated.

  1597. delayed2sleep on February 6, 2014 at 10:25 pm

    I’ve looked at those pages and I’m impressed. A job well done by all involved!

    (Now if only we could get them to do the same for circadian rhythm disorders! Our time will come.)

  1598. Kelly on February 7, 2014 at 4:07 pm

    As always, Julie, thank you for sharing your story. The worst of my symptoms started over five years ago, and shortly after this I met a wonderful supportive man. Unfortunately, instead of my symptoms resolving, they went up and down – the downs including an inability to work and stay awake for more hours in the day than I was asleep. He was the one that helped me learn my symptoms – I never knew there were times I’d suddenly start slurring my speech, zone out, or walk into walls and people as if I were drunk (I would get so out of it I wouldn’t realize this!). He brought comfort as he’d coming running to help when the sounds of his favorite scary movies made me jump and then my would knees give out.

    But after years of referrals to the wrong specialists, doctors just couldn’t figure it out. At times he’d accuse me of being lazy and not pushing through like everyone else does – because we’re all tired. He accused me of deliberately costing him money so he “couldn’t live the life he wanted” and often brought up I never had a real diagnosis so it must be in my head. He went from loving and supportive to saying, “You’re an adult. Take care of yourself.” I later learned he was at his worst during the times he was cheating – that was his way of coping with a girl who just went up and down with her energy levels without warning and had to cancel so many social outings last minute.

    In the end it was a blessing to be broken up with him – but terrifying to know in times I’d fall over in the house I would have no one to help me. I know how he chose to handle the challenges were mean and selfish, but I often battle with the fear of holding someone else back – even after diagnosis and starting treatment. I worry about having to go off medication to have a baby. I worry about the financial baggage I carry from the debt I’ve collected in the five years of trying to figure out why I just can’t push through like all the other average tired adults out there.

    This is a new diagnosis for me – so the stigma of ‘lifelong condition’ is still one I am not sure how and when to process. All of the future I have imagined for myself has strangely changed and I’m just not quite sure how to put meaning to that just yet. My diagnosis has been a blessing to weed out this lovely man with a dark heart – I may have never known it until decades into a marriage with him. Yet it also adds to the isolation I have felt in processing it all. Your shared stories and experiences bring so many, including me, hope and clarity. My appreciation and gratitude is immense. Thank you Julie.

  1599. Kristine on February 7, 2014 at 9:24 pm

    This is a great topic and I am sure experiences vary greatly. I hate to be a downer but my pregnancy experiences were downright horrible. During my first pregnancy I did not have a Dx of narcolepsy. I got my Dx right before my second pregnancy with twins. Both pregnancies came with SEVERE hyperemesis gravidarum, 24 hours a day, which lasted 5 months the first pregnancy and 8 months the second pregnancy. Since narcolepsy wasn’t on the radar for my doctors either time I was prescribed Rx antihistamines for nausea and vomiting which knocked me out for several hours at a time. I ended up dehydrating, starving, muscle wasting and passing out and losing 30 pounds pregnant with the twins! At the end of each pregnancy my blood pressure skyrocketed when usually it is very low. I also retained exhorbitant amounts of fluid which doctors ignored. I can assure you that if I had known how miserable pregnancy would be and what narcolepsy would bring I would have made sure I prevented pregnancy and parenting altogether! But this is where the blessing comes in. My life has been forever changed for having children who are healthy and beautiful! My advice to pregnant PWN would be to make sure you have a doctor who acknowledges your narcolepsy, understands it and how medications and physical conditions affect PWN differently than healthy people. Then make sure you have a support system in place to help you while pregnant and after baby is born. Also make sure you have your finances in order and back up savings for lost work time. I ended up using up my FMLA during pregnancy and losing my job. Being low income, narcoleptic, with a 4 year old and newborn twins, no help and no friends was very difficult and lonely (and at times bordering insanity!) but things always change and get better eventually. I actually surprised myself at what I could accomplish with the help of (at least) one super fantastic guardian angel!

  1600. Ms. Ladybug on February 10, 2014 at 3:42 am

    There aren’t enough resources like this, so your experience, strength and hope are greatly appreciated. Before I was diagnosed with narcolepsy, I became pregnant but miscarried about halfway through the first trimester. During the pregnancy, I was the most tired, fatigued & exhausted that I had ever been in my life and it was all I could do to get through my days. Now being diagnosed with narcolepsy, I understand why my fatigue symptom were so exaggerated…I am relieved to know that I’m not alone and I really appreciate you speaking up on this topic.

    On the note of my miscarriage and in light of my background as a biologist, I wonder if my body was just too taxed to support the fetus. I can’t even imagine taking care of children when I can barely take care of myself, but yet I would love the opportunity to have and raise children one day. Sadly, I wonder if my narcolepsy will make it more difficult for my body to successfully carry to term. Anyone else have any thoughts, education or experience on this side of it?

    • Natalie Kwadrans on April 9, 2014 at 4:34 am

      Hi Ms. Ladybug,

      I’m so sorry to hear about your miscarriage. I haven’t heard anything about narcoleptics having a harder time seeing a pregnancy though, however I found very little research on pregnant narcoleptics.

      In terms of taking care of the baby, it hadn’t been that bad. I’m now on Ritalin and also nap when Victoria naps. I haven’t felt this good in years. 🙂

  1601. Ms. Ladybug on February 10, 2014 at 4:14 am

    Thanks for sharing your experience, strength & hope Julie! My cataplexy triggers are:

    1. Love & affection from my pets – Living alone with VERY affectionate pets AND narcolepsy makes it incredibly difficult to get up in the mornings. Just when I’m waking up to go to work, my cat and dog excitedly try to “help” me arouse so they can go outside and be fed. Their attention and affection immediately shuts my muscles down, unpauses the dream button, and sends me back off to sleep until I can once again start to wake up. Some mornings we repeat this cycle for up to 2 hours before I can finally fight through their affection and get up. 🙁
    2. Stage fright – I had a teaching assistantship when I was working on my graduate degree and almost got fired because of an episode… As a teaching assistant, we actually got to teach biology labs on our own, but were shadowed by one of the tenured faculty during our first teaching session. I was so nervous during my first teaching experience that I went straight into dream mode. It was like I was having a hypnagogic hallucination and a cataplexy attack at the same time and it lasted for like 30 minutes. Apparently, for that entire 30 minutes I “made up” an entire biology lesson and taught complete gibberish to the students. The professor who was monitoring me went straight to my major professor and demanded that I be fired. My major professor hadn’t ever seen that side of me before so he took up for me and came to the rescue!
    3. PMS – Whenever I started to have a cluster of episodes like dropping my phone, spilling my drinks, breaking glassware, or tripping and falling, then it’s usually a good indicator that I am about to have a visit from good old Aunt FLO!!! I guess my body thinks my old Auntie is very stressful 😉

    • joyce Hannon on September 8, 2014 at 11:28 pm

      Cataplexy Triggers?
      Dear Ms. Ladybug:
      I was student teaching in a public middle school and the lesson plan I prepared for my fifth grade class was the introduction of negative numbers. This was an advanced class of very bright, very curious kids and I was SO looking forward to this opportunity. After a brief review of the previous days’ work, I launched into what I knew would be challenging and exciting…..and it did seem to start out that way, but what I launched into must have become a full-blown REM episode what with evidence of cataplexy-hallucination business scribbled all over the front chalkboard. Although it only lasted a few minutes, it was similar to what you describe. I don’t know what to call it,. I wouldn’t call it stage-fright, BUT almost the opposite. I thought I had something very special and very clever to present and whenever I get into that mode, cataplexy is very likely to follow. It’s MY joke or MY story ….I get all flustered and cocky.

  1602. Angie on February 11, 2014 at 2:16 am

    I would like to purchase a t-shirt in honor of my 13 year old son who has narcolepsy/cataplexy.

    • julie on February 11, 2014 at 2:37 am

      Hi Angie! Thank you for supporting your son’s experience with narcolepsy/cataplexy. T-shirts are now available here for 10 more days: https://www.booster.com/narcolepsy2

  1603. Rebecca on February 11, 2014 at 4:44 am

    Hi, I was doing research on narcolepsy for a psychology presentation, and your book caught my attention, which led me to this site. I’ve had narcolepsy for a few years now and finally decided it’s about time I started being open about it, hence my presentation I’m working on. To be honest, this is the first time I’ve truly researched the topic in detail, so I was amazed to see how much support its received. I’ll have to pick up your book one day.

    Now about your post. I’m happy to find that I’m not the only one experiencing this, the hallucinating/paralysis. I never know how to describe these events to my doctors. The best I can come up with is that coming out of them is like you’re underwater and pushing up to the surface, but the water keeps pushing you down. It’s the worst feeling, being unable to move. What makes it even worst is that my hallucinations tend to be the things from nightmares. It’s terrifying, having a floating black cloaked figure resembling the reaper hovering over you as you struggle against invisible chains. What’s weird though, is that when this happens during the day my dreams are good, and I can experience the sensation of flying, and even, I’m quite embarrassed to say, sex.

    Sometimes it’s difficult to distinguish the dream from reality. One thing I’ve noticed when I wake from a hallucination/dream at night, is that after I come out of it, I’m still kinda hallucinating. I’ll sit up in bed, pulling myself out of the dream, and then I’ll notice that my closet door is magically sliding open and shut all by itself.

  1604. Matthieu on February 11, 2014 at 8:50 am

    We share a lot of triggers. About #1 – bugs: i don’t think it has anything to do with the insect itself, i’m having exactly the same type of attacks when, for example, playing badminton. In fact, the cataplexy comes each time i need to deliver a precise blow to some smaller object in movement or that could move… It’s of course a little more dangerous with the bugs. I don’t know how many times i tried to kill a wasp (very common when i live) and instead of smashing it i only brushed it gently, just enough to infuriate it while i’m sitting on the floor, helpless… :/

    My other main triggers are:
    – playing music; used to play bass and drums, can’t anymore
    – meeting old friends; the severity of the attack being proportional to how much i care for the person (embarrassingly revealing)
    – video games, especially if movement is involved (hated the kinect/wii trend)
    – having to show some authority, like when i’m irritated at my son. He usually doesn’t really get what i’m so upset about because it sounds like ghfkdzfjd…
    – being funny, or expecting to be funny; you explained that very well with your brother’s card
    – practical jokes. They have to be performed by others while i’m trying to raise my head enough or find an angle to get a hint of what’s going on.
    – sudden verbal jokes, especially when sitting at a table. I’ve even been used by friends as a kind of scale. When my head falls instantly to the table = that’s an ace (as in tennis).

  1605. Katy on February 11, 2014 at 6:39 pm

    Julie,
    Thank you so much for your advocacy work and especially your “Dear Diagnosis Blogathon.” I was diagnosed with Narcolepsy last week after months of doctors visits, thyroid tests, and finally the sleep study that confirmed my Narcolepsy.

    This week, I’ve experienced a flood of emotions about my diagnosis. I’m eager to start on medication that will improve my life but also terrified of the potential side effects and trial and error period. As I educate myself and read your blog I’m feeling less broken and more empowered. Reading the “Dear Diagnosis” letters helps alleviate my feelings of isolation and that no one (including myself, at this point) understands Narcolepsy.

    Thank you!!

  1606. Angela Ferguson on February 14, 2014 at 12:47 am

    Julie,

    My husband and I love our Narcolepsy: Not Alone shirts! The fit is great, and we can proudly wear them with our Wake Up Narcolepsy wristbands to help educate our friends, coworkers, and anyone else that we run into!

    Keep up the great work!

    Angela Ferguson

  1607. Jill on February 15, 2014 at 3:28 am

    So exciting!

  1608. Beth on February 15, 2014 at 11:48 am

    Thank you for support and helping to spread the world about the first ever Living with Hypersomnia conference. People like you and events like this add validation and hope — two important elements for those living with hypersomnia.

  1609. Cat Rye on February 15, 2014 at 1:04 pm

    The one day conference will be informative and fun.

  1610. Joan on February 15, 2014 at 3:06 pm

    We are all very excited about this conference! Not only will be get the latest research and treatments but we will also be able to meet others who suffer from this rare condition! Many Idiopathic Hypersomnia patients feel alone in their struggles with this disease. To actually meet others who completely understand what you are going through is very powerful. Thank you for spreading the word!

  1611. Rebecca on February 17, 2014 at 8:17 pm

    My symptoms actually started the year I first received the H1N1 vaccination. I got the vaccine at a clinic at my school, and that same year I started experiencing microsleeps during class.

  1612. Ann charnley on February 18, 2014 at 3:59 pm

    I can hardly dare believe a Hypersomnia conference is happening. It took me 11years to convince my neurologist I as not tired I was sleepy.

    Those were the times when no one was really focusing on hypersomnia patients. My sleep doc prescribed “two, maybe three short naps during the day” That was the sum of his treatment recommendations

    I am more than grateful to Dr. Nye’s and his colleagues, because we HS patients know there are a lot more of us out there struggling to get the right disgnosis and treatment.

    My hypersomnia followed post-traumatic Syringomyelia. I hope to meet any Syringomyelia patients that may be attending.

    Finally I live on an island (Martha’s Vineyard) year round, so my sense of isolation makes me doubly excited about meeting other HS.

  1613. Katie on February 18, 2014 at 10:43 pm

    Thank you so much for sharing your experiences with narcolepsy and pregnancy. I just got married this past summer and we are trying to research what pregnancy will be like for me… if I can take my medications, if I can work, how I will feel.. etc. It has been pretty frustrating finding information on narcolepsy and pregnancy. I even went to a sleep specialist-neurologist and she was completely useless. Has anyone found any helpful information on taking Provigil while pregnant or any alternative medications to use?

    • Natalie Kwadrans on April 9, 2014 at 4:38 am

      Hi Katie,

      My doctor told me Xyrem is safe during pregnancy. I didn’t go on it because I had never been on it before so my doctor didn’t know how my body would handle it and what kind of side effects I might experience. I may consider going on Xyrem before I have my next child.

      You might want to speak with your doctor to see if that is an option for you.

      Natalie

  1614. delayed2sleep on February 19, 2014 at 5:33 am

    Like!

    “How all my fears are limiting my potential.” !!

    “…feeling of guilt, regret, shame, and self-doubt inevitably creep in” is true of circadian rhythm disorders, too, at least for me. Getting a diagnosis a few decades earlier might have helped some, so we need to get the word out for the sake of young sufferers today.

    You are an inspiration, Julie.

    • julie on February 19, 2014 at 10:13 pm

      I can only imagine that similar feelings of guilt and self-doubt associated with having circadian rhythm disorders. Thank you for getting the word out!

  1615. Carrie-Ann Burns on February 19, 2014 at 12:31 pm

    Wow this is incredibly beautiful, thank you so much for sharing!!

    • julie on February 19, 2014 at 10:12 pm

      Thank you, Carrie Ann!

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  1617. Melissa Hobbs on February 24, 2014 at 10:52 pm

    Thank you for putting more focuse on narcolepsy.

    • julie on February 24, 2014 at 10:54 pm

      You’re so welcome. I’m beyond excited for this event!

  1618. Linda Behrends on February 25, 2014 at 12:12 am

    I let everyone on my facebook know that if they want to understand me better then they need to join you. Tired of my 10 and 11 year having to explain that I’m not going to fall asleep like they show on TV.

    • julie on February 25, 2014 at 12:52 am

      Thank you, Linda! This will be a great opportunity for people new to narcolepsy. We’ll laugh. We’ll cry. We will raise awareness about the REAL narcolepsy!

  1619. Jeff Smithson on February 25, 2014 at 1:31 am

    Julie
    Thanks for the opportunity to talk with others. This can only serve to help inviduals and families share their challenges as well as to celebrate the wins!

    • julie on February 25, 2014 at 1:47 am

      You’re so welcome, Jeff. This will be a presentation-style event but I hope to have more discussion-based events in the future. Thank you so much.

  1620. Wendy on February 25, 2014 at 2:49 am

    Where is a good site to order narcolepsy shirts/pens! I’m standing in the gap for my 7 year old son who has recently been diagnosed and I want to raise awareness 🙂 can’t wait for this live broadcast

  1621. cindy parker on February 25, 2014 at 4:56 am

    Thank you so much for all that you do for all of us that live day in and day out with this disease. I do now try to find alot of positive to come out of this. And one is to share what I have learned over the past few years that I totally did not know. It took me 3 years to finally really accept and let anyone know I had it with the exception of my family. It is people, such as yourself who helped me along the way to not be ashamed of it or think I was crazy, let alone others thinking I was.
    If I can help one person not feel the way I felt for several years, then I have accomplished what I love to do.
    You are a true Inspiration to me along with so many others . Thank you for that!!
    I look very forward to your presentation.

    • julie on February 25, 2014 at 7:46 am

      Thank you, Cindy! I couldn’t agree more – it’s so amazing to be part of such an inspiring community!

  1622. Teenuh on February 27, 2014 at 2:02 am

    Thank you, thank you, thank you! I have a 2 year old son, and he is all boy. I just recently stopped working, it was too much. My husband wants another child and i am really nervous because we do not live near family and one is a hand full. Hearing these stores really are helpful.

  1623. Debbie Moore on February 27, 2014 at 1:46 pm

    Julie, I serve as the director of the Arlington chapter of Start School Later, a national nonprofit organization of sleep specialists, researchers, parents, teachers and students who are pushing to insure healthy school hours for adolescents. As a result of start times in the 7 o’clock hour, 79 % of teens are sleep deprived. Research has shown these kids fall into a deep sleep at the rate of someone with narcolepsy.

    I was wondering what common ground our organizations could work and support each other?

    • Carrie-Ann Burns on March 5, 2014 at 1:32 pm

      Wow that is absolutely a great idea!! That’s also very interesting information Debbie! I would love to hear what happens with this!

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  1625. Deidre on March 3, 2014 at 5:39 am

    I was wondering what we need to do to do something like this here in Cedar City, UT. It’s still a bit cold here but when it warms up a bit. I would love to get something like this going.

  1626. Nikki on March 4, 2014 at 6:03 am

    This brought tears to my eyes. It has been just about 4 years for me and all of the above is so true. It has been such a journey that few can relate to which makes it tough but amazing at the same time. 4 years ago there was no where near the amount of information and support there is now. Thank you so much for having the heart, determination and love for us to keep us reminded that we are not alone. You are an inspiration and I am behind you 150%.

    • julie on March 4, 2014 at 6:08 am

      Thank you so much, Nikki! Your support means so much to me. 🙂

  1627. Carrie-Ann Burns on March 4, 2014 at 3:20 pm

    You best believe i will be tuning in! With a non-pwn too who is also interested in listening! 😀

  1628. Carrie-Ann Burns on March 5, 2014 at 1:40 pm

    I love this one!

  1629. Carrie-Ann Burns on March 5, 2014 at 1:41 pm

    This is great and sooo true!

  1630. Carrie-Ann Burns on March 5, 2014 at 1:42 pm

    Wow i love this one, sooo true.

  1631. Carrie-Ann Burns on March 5, 2014 at 1:43 pm

    Thanks Julie sooo much for creating this one, it makes me want to cheer… awkwardly 😛

  1632. Carrie-Ann Burns on March 5, 2014 at 1:50 pm

    I told 3 of my friends about these, and 2 were already going but the third just heard about it and is now going 🙂 She is going to the Hawaii One!

  1633. Carrie-Ann Burns on March 5, 2014 at 1:51 pm

    Yaaaay these pictures were sooo cute i think they made everyones v day 😛

  1634. Carrie-Ann Burns on March 5, 2014 at 1:51 pm

    Congrats on doing it so successfully!

  1635. Sarah Lovell on March 7, 2014 at 9:53 am

    Hi Julie!
    Sorry for being a bit slow, but I can’t seem to find where I register for Suddenly Sleepy Saturday. Will I be able to listen to it in the UK? If so, what station do I tune in on? Many thanks 🙂
    Sarah
    xxxxx

    • julie on March 7, 2014 at 5:21 pm

      Hi Sarah, Thank you for your interest in the broadcast! The registration should be above on this page, asking for your name, email address? Let me know if it’s not there for any reason. Happy Sleep Week, lady! -Julie

  1636. Brandy Martin on March 8, 2014 at 12:03 am

    I printed this out to take to the school with me on Tuesday. I am going to educate the staff on my daughter’s condition. I am going to let them know about me as well but this is mainly about getting her what she needs to function at school. Thank you!

    • julie on March 8, 2014 at 12:08 am

      Thank you for raising awareness, Brandy! Thank you for printing this out to share. 🙂

  1637. Nikki on March 8, 2014 at 2:44 am

    Great list, thanks Julie!

  1638. April-Scarlett Lee on March 8, 2014 at 4:12 am

    I wont miss it!… I think that’s 9 or 10pm for UK, ahhh im going to do my very best to stay awake!!!! LOL , I will sellotape my eyelids open if I have to XD

    • julie on March 8, 2014 at 6:14 am

      Thank you, my dearest April-Scarlett! If you fall asleep, no worries, it will be up on youtube the next day, hopefully if the technology gods are on my side. 🙂

  1639. Cindy College on March 8, 2014 at 5:46 am

    Hi Julie,
    A HUGE thank you for everything you do and have done to raise awareness on Narcolepsy. You are truly the “Face Of Narcolepsy”. Everything that is happening because of YOU. I’m so excited for you!!
    (((hugs)))
    ♡ ♡ ♡ ♡
    Cindy College (Caitlyn too!! She loves you!!)

    • julie on March 8, 2014 at 6:15 am

      Thank you for your incredible support, Cindy and Caitlyn. You are the SWEETEST! I feel so very lucky and grateful for such an amazing community. You make this SO worth it! And with that, I better finish my preparations. 😉

  1640. Ramon on March 8, 2014 at 8:44 pm

    Hi Julie,

    Try viewing the Movie “Bandits” with Billy Bob Thornton and Bruce Willis. I*t is surprisingly accurate.

    Better yet, get the DVD and have a Movie Night with a few friends who ‘just don’t get it.’

  1641. Toni on March 8, 2014 at 8:54 pm

    My daughter was diagnosed last summer and she told me about your blog. It has helped me in so many ways to understand how she feels daily. Thank you! You are an inspiration just like her.

  1642. laura j. evert on March 8, 2014 at 9:35 pm

    fantastic post!!!

  1643. Melanie on March 8, 2014 at 9:52 pm

    Hello…I am trying to listen to the suddenly sleepy Saturday event and can’t seem to get it to work. I have registered but won’t take me anywhere. My daughter has narcolepsy and am trying to learn more about how this affects her. Any help would be appreciated.

  1644. Roseanne on March 9, 2014 at 2:47 am

    Thank you for your YouTube presentation today. I connected to so much of your story. (Although, it took me much longer to figure it out and get diagnosed.)
    But, you really made me realize how much shame I have about being narcoleptic–for many reasons including always beating myself up for being tired. And I try so hard to try to hide my symptoms from everybody because I feel like I am lazy and/or being a slacker… Anyway, I plan to order your book soon. Thanks for being so honest and being an advocate for people with Narcolepsy.

  1645. J. Jason Bangos on March 9, 2014 at 3:14 am

    Thanks a lot, Julie, for this insight into the misconceptions involving narcolepsy. We learn something new every day, it seems, and are hopeful for a future where this too can be cured.

  1646. mcwild on March 9, 2014 at 5:11 am

    I tried to download the free book for today and it keeps charging me $8.99 for it.

    • julie on March 9, 2014 at 5:18 am

      Oh gosh, I’m so sorry for any confusion. This promotion took place last year (2013).

  1647. Kathy Herbst on March 17, 2014 at 11:42 pm

    Julie!!!!!WOW!!!!

    I am in awe of you!This post is brilliant!!!
    We are so lucky to have you representing the PWN community . You are awesome!

  1648. julie coffey on March 18, 2014 at 4:25 am

    Julie I haveN narcolepsy. I read your article Sleeps Choice Living with narcolepsy.a We are two peas in a pod. I am having trouble with my family they are in denial. I educate them and they still hold resentments toward me. I can no longer work. I tried over end over again to work I was a in home aid. am now applying for disability. Narcolepsy is a handicap, but I live one day at a time.

  1649. Mechele Mason on March 18, 2014 at 1:20 pm

    Julie you are such an inspiration to all of us suffering, with Cataplexy, I have never felt an earthquake, or I thought that, until u explained it the way u did. WOW I guess I feel them a lot. lol I love following you, You say the words that I don’t know how to say. I appreciate that so much. You are my strength I needed 20yrs ago, when I didn’t know what was going on in my head. thx

  1650. Alex on March 18, 2014 at 5:48 pm

    A great and informative list! It really does bother me that narcolepsy is the butt of the joke in so many films and television shows. Such a reductive attitude to have about a very serious condition.

  1651. Alex on March 18, 2014 at 5:49 pm

    Ha! I love this. Leave it to Hemingway to sum it up so concisely.

  1652. WilliamSwift on March 20, 2014 at 2:52 pm

    I didn’t know the word “Narcolepsy” and this post educated me. I pinned and tweeted the top 10 list infographic.

  1653. Melissa Maxim on March 22, 2014 at 8:11 pm

    Congratulations Julie! Welcome to the geek crowd!

  1654. Ellen Barry on March 23, 2014 at 3:37 am

    Julie…this is spectacular news!! and you so deserve this honor. thanks so much for everything that you do for people with narcolepsy…take care, Ellen Barry

  1655. Barb Kerkhoff on March 25, 2014 at 1:04 pm

    Hi Julie,
    Our daughter (who has narcolepsy) and I went to your presentation at the Atlanta Narcolepsy Conference in October, 2013. We bought three of your books to share with our family. I just finished reading your book this morning and I want to thank you for writing it. The manner in which you describe the details of cataplexy and hypnogogic experiences help me understand much more clearly what our daughter has been dealing with for many years.
    Thank you very much Julie. Onward and upward!
    Barb

  1656. Lindsey on March 26, 2014 at 3:57 am

    I have what my doctors have described as a severe case of narcolepsy (without cataplexy). My husband and I recently began trying to conceive our first child, and the thought of no medication coupled with pregnancy-induced fatigue really worries me. I do plan to discontinue my use of Provigil during pregnancy as it’s a “Category C” drug and there have been no research-based studies on its effects in a human fetus. However, I’m really worried about being able to continue to work full-time. I’m an elementary school teacher and scheduled naps won’t be possible. I’ve already signed-up for short-term disability insurance and am not so much worried about the financial aspect as I am about people viewing me as lazy or as though I’m exaggerating my condition. Did you experience these feelings, and if so, how did you cope?
    I appreciate you sharing your story as these testimonies are difficult to come across and hope to share my own pregnancy experience in the near future! :o)

    • Cal on November 17, 2016 at 9:10 pm

      Lindsey,
      I am a teacher and planning to have my first child soon. Any chance you can contact me to let me know how you managed it? I am scared because I know scheduled naps are out of the question.

  1657. Robert Pickett on March 28, 2014 at 11:28 am

    Hello, Julie.

    I was diagnosed 35 years ago with narcolepsy. It began the summer before sixth grade. There is a coincidence that my siblings and I received MMR vaccinations that particular summer and my episodes began right after. I’m not saying that’s the causation, but as I said, an interesting coincidence.

    At first, I had horrible night terrors, followed by out of body experiences. My mother taught me lucid dreaming techniques which alleviated my anxiety that had developed over going to bed. Then, September came and school began. At first, I thought my excessive sleepiness was due to getting up at 6am to commute to school. I quickly realized this wasn’t the case and something was very wrong. I approached my mother one morning and informed her that I just couldn’t stay awake no matter how hard I tried.

    She immediately went into action and got me evaluated and immediately diagnosed. However, diagnosis didn’t come with any support. Coping was something I had to learn on my own. I think that was the hardest part of all. Everyone around me thinks they know what’s best for me but they don’t realize that over my entire life, I’ve tried it all: vitamins, trying to be “more active”, focus my attention, acupuncture, chiropractic, Modafinil, Ritalin, and on and on. Finally, about five years ago, I told them all to go to hell. If my body says it’s time to sleep, I’m going to honor that and take a nap. If you’re hungry, you eat!

    For many years I suffered from depression because of narcolepsy. My episodes were extreme when I was young. You couldn’t have a coherent conversation with me because I feel asleep so fast and so frequently, sometimes my eyes wouldn’t even close. I lived in two worlds and didn’t know the difference between what was real and what wasn’t. I thought I levitated down the street. I thought I passed through doors like a phantom. Finally, I tried to walk through a sliding glass door and when I bounced back (thank goodness it didn’t shatter!) I had to think to myself, “Hey, something’s wrong here.” And so I began to sort out reality from the hypnogogic phenomenon.

    The most awful part about it isn’t falling asleep. It’s the way people treat us. I can’t tell you how many people have thought I’m on drugs or drunk. I have one friend who, out of genuine concern, is constantly asking if I need to take a nap, which is really annoying. Or even worse, people GIVING ME PERMISSION to fall asleep. (Ugh. Really?) Often, I feel like I have to stay in motion somehow to signal to others that I really am awake: I tap my foot or fingers, I run my hand through my hair, I polish my glasses, I hum. Whatever I can do just so they quit poking me, jostling me, throwing things at me. Leave me alone!

    I’m not angry, just frustrated. I’m actually a very optimistic, positive person. I’ve done some pretty cool stuff. I never went to college (but am finally getting prepared for that) and have run a restaurant, had my own general contracting business, worked for several top law firms, been a public speaker (getting back into that as a matter of fact), and have traveled more than the average person. I’ve worked in politics at an executive level. I just regret that I’ll never be able to be a deep sea diver – seriously. I can drive now and am planning on learning to skydive.

    As I’ve aged my narcolepsy has become less severe. I hardly ever have a cataplectic event anymore. My excessive sleepiness confines itself to certain predictable parts of the day, mostly. I recognize automatic behavior better and can usually halt myself before I do any damage, like walking into a store display with a grocery cart. Most of my acquaintances take me in stride. When I’ve nodded off, one of my better friends told the people around me that I’d gone into power-save mode. (I love her!)

    Anyway, I just read that Stanford University has isolated the cause of narcolepsy as an autoimmune disorder that attacks and destroys a very small portion of a certain group of brain cells, causing us to fall asleep. I don’t know what that means in terms of cure or therapy, or even if we’ll be able to count on that in our lifetimes. Sometimes I wonder if I even care anymore. I’m 45 this year and have had to live with it for so long I can’t remember at all what it was like to be typical.

    Anyway, I applaud you for your efforts. I hope something positive comes out of it and will keep checking to see how things develop. Sorry for the essay.

    Sincerely,
    Rob Pickett

  1658. Julie Marsland on March 29, 2014 at 4:00 am

    Congratulations Julie. You are doing a super job and inspiration to all, who know you and follow your blog.

  1659. Stephanie ODea on March 29, 2014 at 6:34 pm

    thank you for linking to my site, and for the quote! 🙂 We are all works in progress — which is what makes life so interesting! Good luck on your journey; I’m pulling for you!!

    • julie on March 29, 2014 at 10:59 pm

      Thank you, Stephanie! I found your writing SO useful and empowering. With gratitude and big smiles, Julie

  1660. Erica on March 30, 2014 at 2:21 pm

    I would love to see an article on “Workplace Accommodations for Narcolepsy” and when and how to discuss it with your employer and co-workers.

    • julie on March 30, 2014 at 4:09 pm

      Id love to feature that topic too. If you know of someone who can contribute a guest post on that topic, let me know. Thanks!

    • Stephanie on April 18, 2014 at 6:34 pm

      I agree; that would be extremely useful information. As a teacher, you would think most of these accommodations would be applicable, but administrators aren’t nearly as understanding when teachers need accommodations (heck, they usually aren’t even that understanding when my students need accommodations).

      • Elizabeth Dahmer on January 10, 2017 at 10:54 pm

        That’s where I’m at right now, I’m studying to be a music educator and was failed in a course due to attendance not my competency,but I completed all the course work with A’s; I just had difficulty getting to class on time. Despite my disability memo, she failed me on the basis that it is an unprofessional trait and wouldn’t be excused in the professional world as a teacher. I tried to appeal the grade but both the teacher and the music dept chair agree, I don’t know whether to keep on to the next step or not.

  1661. erica on March 30, 2014 at 5:26 pm

    this is great! so encouraging as i start to look at grad school options (with work)! thank you!!

    • julie on March 30, 2014 at 5:57 pm

      Thank you, Erica. Good for you for starting to look at grad school options with work. Wow! Keep up the great work. 🙂

  1662. Josh Josh on March 30, 2014 at 10:05 pm

    Greetings,
    M y name is Josh(REAL NAME JONAH)Born and brought up in an African soil.A journey of identity and discovery is what led me to your ever resourceful site.I am 26yrs old and i work in a sales industry.Last year i developed weird symptoms at place of work .Every time we had a meeting i would dose off(EDS).This was the genesis of my fate as my peers started to ridicule and brand me as the sleepy guy.I consulted my doc who advised me to take a break/leave from my very demanding job attributing my fatique to nature of my job.
    The unfolding symptoms developed into hallucinations and sleep paralysis of which i was referred to a psychiatrist who gave me dozens of drugs that caused more harm than good to my health.Due to stigma from peers i resigned from my only source of livelihood.Being from third word economy where proper medical attention is a reserve of the rich,I opted to “accept” this strange disease and move on.September 2013 i accidentally came across narcolepsy and its symptoms in the internet.It perfectly described me.I went to see a sleep doctor who carried out an EGG taste and confirmed that i am indeed a narcoleptic.
    That marked the beginning of self discovery.My father(uneducated) attributed the symptoms to a curse, stress or depression while my peers strongly believe that i am a drug/alcohol addict and i don’t sleep at night that is why i dose anyhowly during the day.Twice this condition has failed me in a job interview as i went asleep in the middle of the session.
    I accidentally hit into your educative site an eye opener and a new paradigm shift in the discovery of my self.No one tends to understand me in my community.My relationship is drowning as no lady wants to buy into my story that i am suffering from sleep sickness.
    I AM SUFFERING IN SILENCE.MY CAREER AND RELATIONSHIP IS SINKING.
    PLEASE HELP!
    Josh,
    Nairobi,Kenya-Africa.

  1663. Josh Josh on March 30, 2014 at 10:40 pm

    Julie,
    By connecting to the above experiences and voices has given me strength,determination and zeal to fight on.I have just came across your site.I was once mis-diagnosed by a psychiatrist as a victim with suicidal tendencies and he gave me drugs#### to”suppress it”but thanks to your website that i came across accidentally .Though this condition has caused my career(i dossed off in two interviews=potential employer and needless to say i never got the job) Socially i have had a break up in relationships as no one wants to understand me.
    When will narcolepsy be demystified in Africa and Kenya in particular?
    For how long shall i live in a culture of silence?

    • tam kozman on July 3, 2014 at 7:55 pm

      Hi Josh, I’m somewhat aware of the frustration faced by Kenyans with narcolepsy; I understand it is still widely believed to be a curse! Do you know about the Facebook group “Kenya Narcoleps Awareness Group”? https://www.facebook.com/groups/586473958041030/
      They are fighting very hard to raise awareness of narcolepsy!!! Best of luck to you all! 🙂

      • tam kozman on July 3, 2014 at 7:59 pm

        Here’s one more Facebook group, Josh:
        Narcolepsy Awareness in Kenya

  1664. Makky's Mom on March 31, 2014 at 3:16 pm

    my daughter is only 8 and has a hard time verbalizing her triggers, but from my observation, her triggers are (in order of biggest to smallest):
    – humour, especially her own humour and the anticipation of being funny
    – similar to humour and her 2nd biggest trigger is being sneaky
    – winning!
    – being proud of an accomplishment
    – showing affection to her daddy
    – being overtired
    – having her pet rat’s tail slip up into her nostril while sitting on her shoulder
    – sudden surprise, as in jump out of a closet and say boo as she’s walking by

    She definitely is not triggered by being hurt, scared, angry, excited or physically active. And bugs do not bother her, LOL. Julie, she can come by and kill all your bugs for you!

  1665. Branden on April 2, 2014 at 3:49 am

    It’s so cool to see schools being accommodating! It’s so easy for us to feel like a burden or “weak” if we can’t do something like everyone else…or maybe that’s just me =)

  1666. Jackie on April 2, 2014 at 5:46 pm

    Julie, I ordered the wrong size! Will these shirts be available again? Thanks!

  1667. Rita Giebink on April 3, 2014 at 5:57 pm

    Rita here, mom of Brody, diagnosed with N/C in 6th grade. We made up a booklet (paper AND digital) with information and resources and personalized it to Brodys specific triggers and symptoms.
    He kept a copy in his backlpack in case friends wanted to learn about him and I emailed it to EVERYONE in the school system who would have contact with him. It was modified and followed him through elementary, middle and high school.
    It was a lifesaver a million times and a great icebreaker for teachers and administrators who were curious. It wa also an excellent tool when a couple of teachers had been disrespectful of his condition and not allowed him any accomodations. I found the school district used it in the meetings with these teachers to reiterate his condition and the necessity to respect his rights.
    Thankfully, he has had an amazing career in school and the community and our success story is a testament to how great people really are when they are educated and empowered!

  1668. Denise Hisey on April 5, 2014 at 2:27 pm

    Julie, this is a wonderfully inspirational quote and I admire how you’ve highlighted your friend Gail with it. I imagine the two of you encouraging each other in your dreams. What a gift! I’m working on my dream, and I think this quote will stick with me for a long time. Thanks!

  1669. Kate on April 5, 2014 at 8:29 pm

    What a gorgeous place to have a sleep walk! Nice job, Dietra and Jacksonville friends!

    I am extra lucky that despite not living anywhere near Florida, I have the pleasure of having y own sleep fairy, thanks to the magic of the interwebz–and here I didn’t realize she was a sleep fairy this whole time! *wink, wink*

  1670. Sham on April 9, 2014 at 2:51 pm

    Hello! I recently found out I was pregnant. The doctor called this morning and said it looks like I’m about 7-8 weeks along. I stopped taking my Nuvigil about 2 weeks ago. Has anyone taken meds during the first trimester? I’m really worried that there will be complications. There is really no uplifting information out there about this. Any ideas or experiences?

    • Renee on July 28, 2014 at 8:10 pm

      My OB told me it was ok to continue taking my 5mg dosage of Adderall XR (I was just diagnosed with N w/out C in June). I’m 6 weeks pregnant and have had no problems, however due to restless legs and nauseousness at night I’m getting horrible sleep, which means I’m exhausted during the day at work. I have done a lot of research and found that most women had no problems with taking their Adderall at a low dosage (below 20mg) throughout their pregnancy. I’m about to have to bump up my dosage to 7.5mg I believe though; it’s either that or drink an excess of caffeine just to function at my job. Still makes me very scared and hesitant though…I’m definitely conflicted!

  1671. julie on April 9, 2014 at 4:43 pm

    Thank you, Dietra for hosting this amazing first annual SLEEP WALK JACKSONVILLE! I cannot believe how lovely and successful this event was and I only wish I could have been there in person to walk, laugh and smile with you, on the BEACH! Thank you to all the volunteers and attendees who made this sooo very special. Big smiles and all my gratitude, Julie

  1672. delayed2sleep on April 12, 2014 at 9:52 pm

    This sounds interesting and important. Do you know if there’ll be report that the public can access?

  1673. Amanda K. on April 14, 2014 at 6:41 pm

    Hi Julie,

    I not only have Narcolepsy with Cataplexy, but I also have the opportunity to research Narcolepsy with Cataplexy for my “First Year Seminar” class, Neurological Disorders, at Wake Forest University! I would love to put some of the statistics you mentioned in the infographic in my pape; however, I need to know where you got your sources from! If you wouldn’t mind sending those to me via e-mail, it would be much appreciated! Thank you for all you do in spreading awareness and educating those who have never heard of Narcolepsy!

  1674. Stephanie on April 18, 2014 at 6:37 pm

    Do you have to have disability paperwork in order to receive accommodations, or can you receive accommodations just based on your diagnosis?

  1675. Nicole on April 20, 2014 at 7:25 am

    I was diagnosed with severe narcolepsy on 2003. At that time I was a single mother to an energetic 5 year old boy. In 2006 I married and we started right away on expanding out family. In 2007 we had a boy, and in 2009 we had a girl. My husband had a vasectomy, but never went back for the check up. Low and behold in 2011 we had another little girl. My husband also has a daughter from a previous relationship. So together we have 5 kids. Thankfully my husband is super understanding and since we’ve been married I have worked part time. In the last year I cut down to only 2 days a week. I did continue meds (adderall) while pregnant. Once I had my babies I switched to Ritalin while breast feeding. And when I was done breastfeeding I went back to Adderall. I am currently on 40mg in the am and 40mg at noon. I still struggle to get up and going in the am and by 5/6pm I can fell my body shutting down. It is definitely a challenge having so many kids and different start and end times to their schools and running them around in addition to trying to maintain the house, etc. Sometimes I wonder why I was dealt the narcolepsy card, but then blessed with these beautiful, healthy children that I barely have the energy for. Just doesn’t seem fair.

    • Darla Sneed on July 21, 2016 at 3:08 pm

      Nicole,
      I feel the same way. I have three kids, ages 15, 8, and 5, all in different schools with different schedules. Plus, I work in the preschool (as a trade.) I am lucky that my husband works(high school teacher) and still makes dinner. My 8 year old is ADHD, my opposite, and my 5 year old is also very active. The 8 year old is borderline oppositional defiance disorder. She’s a challenger of all rules and often wears me down to the point I feel like the other two are not getting their fair share of care.
      I have also found myself feeling badly that I am as limited as I am when it comes to energy. I’m on the maximum daily dose of Dexedrine and taking Xyrem at night. When I start to feel this way, my husband pulls me back and reminds me that it’s not fatal, annoying yes, but not terminal and is manageable.
      My family is full of ADHD peopledoesn’t (go figure… I’m the only N with C person). They seem to understand and often criticize me for “being lazy and sleeping”, which is frustrating because my parents are both dentists and should know better, but nobody’s perfect.
      I guess that’s my point. Nobody’s perfect. We have our limitations and our boundaries, but we have ways to manage them and we are lucky enough to have healthy and beautiful children. Those children will face challenges of their own, especially when they become parents, and what better role models could they have had to show them how to keep going and push through the really tough times and succeed? We succeed every single day. We will our bodies to wake up, raise children, maintain our homes, shuffle schedules, etc. We do that every single day, tired and exhausted – sick or healthy- it doesn’t matter. We still get up and get things done. That’s what we show our children every single day. That’s what they learn from us. They know we love them every minute (even when we’re mad or tired).
      So, when you feel like it’s unfair to your kids, I hope reading this helps. Remember, our children love us just as we love them. It’s a challenge, yes, and we overcome our main obstacle millions of times every year.
      Take care,
      Darla

  1676. Michael Hennessey on April 20, 2014 at 9:16 am

    I just found your site.
    My triggers are pushing a grocery cart.
    Walking in a mall when I can’t see an escape route. I have Combat PTSD.
    Embarrassment or confusion.
    Heat
    Anger

  1677. alyson moore on April 22, 2014 at 9:14 am

    Hello Julie,

    We have spoken briefly via facebook. I am so pleased you are writing another book.

    I attend a local drawing session at The Scarab Club; downtown Detroit. There are two young M.D.’s and one EMS Ambulance worker in my session. I have had many cataplexy attacks while drawing.

    It stunned me that the two M.D.’s never heard of Cataplexy or the drug Xyrem. The EMS gentlemen, kinda knew what Cataplexy is. LOL, I told EMS gentlemen, “please don’t call EMS on me, MR. EMS—it’s cataplexy.

    So, I tried my best to explain cataplexy, they shrugged their shoulders, but the second I said, “it’s also Narcolepsy, but my major syptom is Cataplexy. “Oh, they say, we know what narcolepsy is”. The three medical gentlemen quickly google on the I-phones and then thanked me for teaching them.

    It’s such a frustration explaining Cataplexy. I’ve been trying to think of a Tee-shirt with a good and simple explaination—some day I will.

    At the moment, struggling too long with Insomnia which as gotten worse, but cataplexy episodes are frequent, but I recover more quickly.

    Very soon, I will be admitted to In-Patient Sleep Program at the University of Michigan.

    Suddenly I have some tears because I am so thankful that you are working so hard to be an advocate for “ALL” the symptoms of Narcolepsy.

    I’ve been awake all night; tis 5:12 am, so my thoughts may not be too clear—best to try again to sleep—-the morning birds are starting to sing.

    many supportive hugs,

    Alyson Marguerite Moore

  1678. Valencia on April 23, 2014 at 11:08 am

    Julie,
    I also want to thank you for all you are doing.
    I was having all the signs that you are talking about.
    When my grandfather passed away, I was talking to my Aunt and she said my grandmother that I never had a chance to meet had Narcolepsy. I also think my Father and his Brothers have it. Anyway my symtoms have got worse. I use to always work two or three jobs . And alway could handle night shift. However my irrability level was very high, aggressiveness with my words was getting worse.
    My other Aunt was telling me it was a type A personality. So I blew it off till I got the flu and was watching TV when I tried to move my arm and legs, I could not move it Scared me! I also was seeing people that were not there hearing a radio when there was nothing on. So I was a wake but asleep and the something when I was at work they would say I said something or acted a rude manner and could not recall that it ever happened. But since I have been Diagnosed my supervisors at work said it was amazing I did a 180 turn around. My roommate said that I look better more positive less glum. The doctor said I need to stay moving at a fast pass to boost my adrenaline. So that I will not have any issues! However my job HR department can not understand. I tried educating them but they don’t want to learn anything. Two times that I left work, I was already gone just going threw motions. They should have had me go to the clinc or called someone to come after me. But no ! I almost got into a wreak when I seen light and sirens. I swerved it work me up out of that daze feeling. The other time I left early from work and clasped in my living room. What can I do to get my employer to understand?

    Please help me if you can?

    Thanks! Valencia

    • julie on April 23, 2014 at 5:29 pm

      Hi Valencia, I’m so sorry to hear that you have narcolepsy and that it is proving challenging to help your employer understand. I wish I had the magic answer for how to help your employer understand, it’s not really my area of expertise, I just try to raise general awareness in the public and tell my story. Sometimes a letter from your doctor may be helpful. Continue to advocate for yourself and your narcolepsy – check out my mobile app or resources page for facts sheet you can download and share. You are not alone in this struggle. Many people have a hard time helping others understand. Stay strong, you are an amazing person overcoming so much adversity!

  1679. D-Termined on April 23, 2014 at 11:42 pm

    Hi I am the mom of a 17 year old student that was misdiagnosed for the past three years. After having missed more than 25 days of her senior year of high school, due to severe exhaustion and weakness, we continued to press on. On one of our many doctor visits this year, I finally broke down and begged her family doctor (the fourth one in 2 years) to complete a sleep study and do not prescribe medication or diagnose my child with anxiety/depression. I am happy to say that 1 week after the sleep study was performed, we received the diagnosis of Narcolepsy. Unfortunately, my daughter had already completed her SAT’s and did not do well due to debilitating exhaustion. She has been accepted into college, yet we continue to search for scholarships to assist with her Freshman year! I pray no other student has to go through all the medical loop holes to receive a narcolepsy diagnosis. I also would like to encourage each family not to give up on your child, you are their best advocate. It’s been a ruff ride, but we made it and continue to move forth! My daughter plan to become a medical missionary nurse practitioner, so that she can help others.
    Exhausted but hopeful,
    Mom
    Lupus/RA, Primary Hypersomnia survivor and Narcolepsy educator

  1680. Shawn on April 24, 2014 at 3:05 pm

    My 14 year old son was diagnosed with Narcolepsy with Cataplexy just after his 14th birthday in 2013. It was very hard at first for him to accept his diagnosis, but he is slowly learning just to be himself and do HIS very best at what he is capable of doing. He has always loved playing sports. It has become a little difficult at times but he never quits and does what he is capable of doing. He is just starting to want to reach out or for me to reach out to others with Narcolepsy. I am running my first 5k this weekend for Children’s Hospital in New Orleans, La and will have Narcolepsy support on my shirt “RISE AND SHINE WITH NARCOLEPSY”. I am ready to learn more about Narcolepsy with Cataplexy and do what I can to help him grow into the successful young man I knew he would always be. Thank you for sharing your story and making us realize my son is NOT ALONE.

  1681. Julie Fain on April 27, 2014 at 7:11 pm

    Wow, what a fantastic letter. I’ve been avoiding reading any of these Dear Diagnosis letters because I knew they would put me to tears lol. This is the FIRST ONE I’ve read and I’m already crying! It reminds me of my darkest hours and everything my mother and I went through when I was trying to find the same answers.

    You never have to feel scared and lost like that again. None of us do. We have SOME answers and an entire community of people who understand and care; Narcolepsy doesn’t stand a chance!

    • julie on April 27, 2014 at 8:28 pm

      Thank you so much for checking these letters out, Julie! They are tear-jerkers, but such amazing reminders and notes to self in here. Your friend, Julie

  1682. Alex on April 30, 2014 at 10:46 pm

    Great and useful phrases here, Julie! Yep, “Oh wow, I haven’t heard that one… today,” has been very useful for me over the years. It’s polite, but still speaks to the other person’s ignorance just a tad.

    • julie on May 1, 2014 at 5:59 am

      Thank you, Alex! You’ve made me feel sane despite this crazy adventure called narcolepsy. 🙂

  1683. Brody on April 30, 2014 at 10:54 pm

    Just wondering, is there a new announcement date set for the scholarship? I know tha the deadline was changed a little, just wondering if the announcement dare was set.

    • julie on April 30, 2014 at 10:55 pm

      Hello! We will be making the announcement tomorrow, May 1st. Thanks so much. 🙂

  1684. Mike F on May 1, 2014 at 1:22 am

    I’ve practiced #5 for many, many years and it absolutely works (sometimes you may have to be forceful, some would call it rude, not me).
    I absolutely suck at #1, I need to look for opportunities every day to practice this one!
    #4 – I am way too sarcastic to use this one, but I will try to remember it.

    I’d like to add #6: be on the lookout for promising opportunities to bring up Narcolepsy. I have been amazed at how often I receive a positive and inquisitive response!

    • julie on May 1, 2014 at 2:26 pm

      Thank you Mike. I love your #6 idea. So very true. 🙂

  1685. Martha on May 1, 2014 at 1:43 pm

    Love these. Thanks, Julie.

    • julie on May 1, 2014 at 2:27 pm

      You’re so welcome, Martha. Thanks for reading.

  1686. Rita on May 1, 2014 at 2:19 pm

    My son texted me from school and has had lots of kids asking him questions about his narcolepsy because of the show. He’s not offended by it, it’s an opportunity to talk and talking spreads the word.

    • julie on May 1, 2014 at 2:27 pm

      That’s a fantastic perspective!

      • Rita on May 1, 2014 at 2:51 pm

        He’s a fantastic guy!

  1687. Martha on May 1, 2014 at 4:30 pm

    Thanks, Julie. This is a great chance for us to educate others.

    • julie on May 6, 2014 at 8:02 pm

      Thank you, Martha. Here’s to educating others about the REAL narcolepsy. 😉

  1688. Lucy on May 1, 2014 at 5:34 pm

    A friend recently told me a fantastic expression which definitely applies to narcolepsy and cataplexy – “Don’t talk the talk if you haven’t walked my walk”. I tend to get quite frustrated when people tell me that they understand how I am feeling, or what I am experiencing, as if they are experts on narcolepsy. Often, I just have to remind myself that many of the symptoms of narcolepsy are difficult for other people to understand, and may well require a little more explanation!

    • julie on May 6, 2014 at 8:02 pm

      Great expression, Lucy! Thank you for sharing! 🙂

  1689. Laura J. Evert on May 1, 2014 at 8:00 pm

    Jacob! Please join us http://www.facebook.com/groups/NinColumbusOhio. I have lived in Columbus since 1993, diagnosed in 1995. Hope you can make some of our monthly meetings and Congratulations! Laura

    • julie on May 6, 2014 at 8:01 pm

      Great thinking, thank you Laura!

  1690. Mark C Dodd on May 1, 2014 at 10:00 pm

    For every positive from such a stupid and shallow representation of this condition there will be ten negatives. I am forever listening to and consoling PWN who find family, friends and workmates laughing at their life changing condition. Having such a popular TV program perpetuate the “funny” tag is a major setback. Does society allow jokes about other disabilities to go without challenge? Try filming a scene of a blind person tripping over an obstacle of falling in a hole and call it comedy. Or swearing in full voice behind a deaf person. Or making break dancing jokes about an epileptic having a fit. All of these on mainstream TV or even Youtube would result in major public outrage. Yet a person having a cataplexy or sleep attack is fair game for comedy! The ABC should make an apology to the narcolepsy community. Most countries have racial vilification laws. It is about time we had similar for disability.

    • joyce on May 2, 2014 at 7:47 pm

      I absolutely agree with everything you have said here, Mark; and I like the way you said it.

    • julie on May 6, 2014 at 8:01 pm

      I agree, Mark. It would be so nice if the show would offer an apology or offer to help raise accurate awareness with a short video educational message about the REAL narcolepsy after an upcoming episode. Here’s to hoping for a brighter more thoughtful and kinder future.

  1691. Valencia on May 1, 2014 at 10:16 pm

    Julie, I wrote to one of the local tv stations here in Chattanooga,TN and mentioned you in my email hope you don’t mind! I hope to here back from them soon. I also seen my sleep doctor and told them how you have helped me better understand about Narcolepsy. So that they might send more people to your website.
    Thanks for all your help!
    Valencia

    • julie on May 6, 2014 at 7:59 pm

      You are awesome, Valencia! Thank you for writing to your local news stations. This is a great step to fuel interest and awareness of the REAL narcolepsy.

  1692. joyce on May 2, 2014 at 12:23 am

    I didn’t see the show….but what I am reading here … “Score! I get a disease that’s both rare and fun…narcolepsy!” She also describes it as an “escape for the brain”. This upsets me….not that it’s anything new, but it still hurts and it’s still going on. I don’t know what followed this on the show …. if anything .. I didn’t actually see it.

    I am going to be 75 this year and I am still faced with this kind of thing all of the time. I ask you how can we expect everyday people, including media people, to understand what narcolepsy really is about if doctors, nurses, hospital personnel, pharmacists, etc. are not getting it? Is this private information restricted to sleep specialists and the NIH?

    • julie on May 6, 2014 at 7:59 pm

      Hi Joyce, I’m so sorry to hear that you have been facing narcolepsy for so many years. I can only imagine how challenging this must be and you are a very strong woman for taking this on. I’m cheering for you.

      I try to raise truthful awareness about narcolepsy through my memoir, “Wide Awake and Dreaming” along with my video series, blog and speaking engagements. I hope we can continue to educate folks in the media, along with medical professionals. Thank you, Julie

  1693. Kelly May on May 2, 2014 at 1:27 am

    “…an escape for the brain.” This offends me greatly. I would love for my brain not to escape. I would love to be able to have the energy that people around me have to get through a normal work day without medicating with stimulants or having to sneak off for a nap. I would love to have real memories of things that I’ve done instead of having to wonder if what happened could have been a dream or even worse, not even forming a memory because I was half asleep! Narcolepsy is definitely fascinating but is certainly not fun!

    • joyce on May 2, 2014 at 7:56 pm

      They don’t understand, Kelly…they have no idea how offensive they are…but now you have taken this opportunity to articulate in detail just how wrong they are and that’s a good thing.

    • julie on May 6, 2014 at 7:57 pm

      So true, Kelly. Thanks for commenting. I hope we can continue to educate folks about the REAL narcolepsy. Your support means so much to me.

  1694. Mary on May 2, 2014 at 2:39 am

    I just streamed this episode of Modern family dealing with narcolepsy. I thought this gave such a false betrayal of Narcolypsy….. I wish all you had to do is lesson your stress level to be free of Narcolypsy . This disease needs some real attention, not a short unrealistic betrayal of the issue.
    Julie, please don’t take this comment personal, you are doing great things for Narcolepsy.

    Mary

    • julie on May 6, 2014 at 7:56 pm

      Mary, I completely agree that this was an unrealistic portrayal. I hope to help build truthful awareness through my memoir and various efforts. Thanks for commenting. We are stronger together. 😉

  1695. Laura Eudy on May 2, 2014 at 1:55 pm

    I think a terrible message from this show is that the cause of narcolepsy is stress and therefore the cure is eliminating stress – in this case by admitting you lied to your spouse. Phil gets severe cataplexy all of a sudden at age 40-something and cures himself later that day. Alex is supposed to be the intelligent daughter but she’ll definitely get an F on her research paper! She says that admitting he lied will cure him. Phil asks if she’s sure and she says, “Yes, I better be right or I’ll have to rewrite the ending to my paper.” I realize stress exacerbates narcolepsy but it is not a one-day disease & cure.

    A huge message of misinformation from this show is the idea that it’s a curable, short-term problem, rather than a lifelong disease without a cure.

    • joyce on May 4, 2014 at 1:44 am

      I agree with you Laura.

    • julie on May 6, 2014 at 7:55 pm

      So true, Laura. Thanks for sharing your opinion here. I hope we can help build better truthful awareness in the future.

  1696. Michael Hennessey on May 2, 2014 at 5:26 pm

    I have always been amazed by “friends” in a political discussion about the homeless, addicts, welfare etc. Somebody always seems to bring up those lazy people on disability and then turn to me and say not you of course! I look around the group and think there isn’t anyone else disabled here.

    When I am snippy. I say you know narcolepsy is like being in a dream state all day long. When I wake up tomorrow I will find out if you are real or hopefully a figment of my dream!

    • julie on May 6, 2014 at 7:54 pm

      I love your description, “narcolepsy is like being in a dream state all day long.” Very powerful, thanks for sharing, Michael. I certainly understand your frustration with these “friends”. Hang in there! Your friend, Julie

  1697. Rita on May 3, 2014 at 4:22 am

    Congratulations to you both!

    • julie on May 6, 2014 at 7:53 pm

      Thank you for your support, Rita!

  1698. Yanita on May 4, 2014 at 5:38 pm

    Thank Julie. What a great gift you have giving me…From Toronto sending lots of Love.

    • julie on May 6, 2014 at 7:52 pm

      Yanita – thank you so much for checking out the app! I hope you like this tool. 🙂 Big smiles and gratitude sent your way, Julie

  1699. Stephanie cohenour on May 5, 2014 at 12:10 am

    Thank you so much….I have learned a lot about myself an what happens to me I have learned more from your website and videos an such than I have from my own doctor. …..thank you for helping make things clear on a personal level than medical…..keep up the amazing work!

    • julie on May 6, 2014 at 7:52 pm

      Stephanie,
      I’m so glad the videos and website are helpful! It means the world to me to hear this. As patients, we can learn so much from one another. Sending wakefulness and big smiles your way, Julie

  1700. Rob on May 5, 2014 at 1:11 am

    Congratulations Kendra and Jacob! Your respective drives to be successful are inspirational to a slightly older…lol…Peron like me. I wish both of you the very best of luck in your collegiate studies!!

    • julie on May 6, 2014 at 7:51 pm

      Thank you for checking out our scholarship results, Rob!

  1701. Lisa on May 6, 2014 at 7:43 pm

    Lisa here, mom of Zoe…..thank you for such useful information that you are sharing. My daughter is going through testing for N/C as soon as we can get in for a sleep study. She has been misdiagnosed for over a year and we are finally getting somewhere with new doctor’s. If the diagnosis is confirmed…I will be back with more questions. Thank you again!

    • julie on May 6, 2014 at 8:03 pm

      You’re so welcome. I hope the testing goes well and you receive real answers. Keep fighting for your daughter’s health and happiness!

  1702. Mahogany on May 7, 2014 at 11:31 am

    I am so happy that there is finally a scholarship specifically for narcoleptics. Last year, I searched high and low for one and was so disappointed that one didn’t exist. I am so happy that these two recipients are able to benefit from from advancements of narcolepsy awareness.

    • julie on May 8, 2014 at 5:28 am

      Thank you, Mahogany! We are so proud to have finally created a narcolepsy scholarship.

  1703. Susan on May 8, 2014 at 3:26 am

    I found myself emailing my displeasure on the show’s website. ABC needs to hear from its viewers that it needs to be more accurate in how it portrays medical conditions/disabilities. You’d think networks would be smarter by now. Guess we’ll need to keep reminding them that making fun of others’ physical problems, whatever they are, just isn’t comedy.

    • julie on May 8, 2014 at 5:18 am

      Great idea, Susan. Thank you for contacting ABC.

      • Susan on May 11, 2014 at 6:24 pm

        Unfortunately it’s not apparent that ABC actually reads the comments that they receive. I have an email response from them that is obvious a computer generated, generic response, no indication of the topic of my email, just thanking me for my comments, indicating they can’t respond to each comment they receive and telling me all the places on their website where I can leave comments! As if viewers would continue to send comments when they’ve been told that ABC can’t be bothered with having a person actually read them! I honestly don’t know how to get the word out about narcolepsy, or any other issue that the networks report on incorrectly, if nobody is there to listen.

  1704. Nikki Hurst on May 10, 2014 at 9:14 am

    Julie,

    I just got my shirt in the mail from Booster and when I opened up the package I just started balling. I have been officially diagnosed for 4 years, I have felt so alone, unable to relate to anyone about what was happening to me and how I feel on a day to day basis. The daily fight of all the symptoms, how most people only see the EDS and unaware of all the other symptoms we face daily. 4 years ago there wasn’t was much information out there as there is now. February of this year I started re-researching narcolepsy and was so blessed to come across your inspiring site. Its one thing to see your site and to feel the hope it filled me with, but receiving my t-shirt in the mail made it reality, tangible, real. It released so much pent up emotion of struggle, frustration, exhaustion of the day to day we experience from fighting through our day and expressing either education about narcolepsy or holding your tongue (for those you realize don’t care/not interested in understanding, not at all saying they are bad people at all! Most of them are my family lol)

    I have lost relationships, friends, jobs, social life, activities, family support/understanding and more to narcolepsy.

    And I have to say I am damn proud to have narcolepsy. It has shaped me into the woman I am today with the people I am blessed to have in my life. The struggles I have faced, continue to face, and will face in the future in my belief is all for a reason. I feel very blessed to be given the life I have and I am grateful for everyday and more thankful everyday. I fight for each day, give each day my all, and I don’t regret one thing. Narcolepsy has taught me to love, appreciate and cherish each day and the people that are in it. Narcolepsy has taught me to love myself and all my traits for who I am. I wouldn’t trade it for anything.

    Thank you, thank you for having the courage to stand up. I am behind you Julie 110%.

    Dream Big and Never Surrender,

    Nikki Hurst
    HD Enterprises

    Within the next couple years I plan to donate at least $10,000 towards research. I love the quote, “If I can open others eyes to narcolepsy and its symptoms, maybe someone will lead a better life.” Worth every single penny plus some.

  1705. Arne Karlsen on May 10, 2014 at 10:34 am

    About bugs & jokes…-spot on!
    I can enjoy a comedian, but a stand-up, I will never be…having a hard time just passing a cherful comment without holding on to something.

  1706. Jackie Quinn on May 12, 2014 at 5:48 pm

    Hi Julie!
    I tried to order a t-shirt but it says “This booster is on hold” on the website. How do I order? Thanks!

    • julie on May 12, 2014 at 5:56 pm

      Thank you, Jackie! SO sorry about this confusion, there’s been an error with booster, they are working to resolve it right now. I will be sure to let you know when it’s fixed. Thanks again and my sincere apologies.

  1707. cathyann on May 14, 2014 at 12:15 am

    I was just recently diagnosis and I would to get involved more. Is there anything else I can do or get on the mailing list for next year

    • julie on May 18, 2014 at 4:46 am

      Thank you for your comment, Cathyann. I will put you in touch with our amazing Jacksonville superstar, Dietra! Cheering for you! 🙂

  1708. Tanisha on May 17, 2014 at 6:00 pm

    Wow!!!!

    Julie,
    I am very pleased to see that you are doing so muchnto promote narcolepsy awareness. I am a nurse, and was recently terminated from my job for falling asleep, when I explained tonmy boss that I have a sleep disorder, I was told that I can’t use my disability as a crutch. I have lost so many jobs and dropped out of college so many times because of this disorder. However, after finishing nursing school, I am ready to stand up and fight….no more feeling isolated and sorry for myself. I have been reading so many blogs and stories about people with the same condition, some are success stories, others are people like me, wondering if anyone else knows what its like to be narcoleptic. This year I plan on bringing narcolepsy to light as well, I would like to know when you will be in the Michigan area to help educate others, and employers in particular on how to help rather than mock people, or simply fire them for being sleepy, when it is due to narcolepsy. Keep your eyes and ears sharp….and Julie….I am pleased that God gave you the strength to educate and advocate, I pray that I can do some good for others like us as well.

  1709. Hilary on May 17, 2014 at 11:14 pm

    First of all Julie, great post. The picture of the cafe sign cracks me up. You handle criticism well, some of the harshest criticism comes from fellow PWN. Not that you need reassurance, but your book is great. In no way did I perceive you as having a pity party- but more of the struggle and frustration of N followed by shear determination and perseverance of a champion spirit. You are a great advocate and no one can take that away from you via an Amazon review. Keep doing what you do- we love ya! (Well most of us anyway 😉

    • julie on May 18, 2014 at 4:44 am

      Thank you, Hilary! Your support means so much to me! I suppose I’ve read memoirs that I found overly pity-party-esque and so actively tried not to indulge too much, but memoir, by nature, is fairly self-reflective. Thanks again! Sending so much love and smiles your way, Julie

  1710. Valencia Blake on May 17, 2014 at 11:43 pm

    Julie,
    I think you are a great person, and what I have learned from you means the world to me, you gave me courage to want to help others. When I first found out I had Narcolepsy / Cataplexy . I felt like my missing pice of a puzzle was found. However when I was reading your book I seen a lot of me in through your experiences with relationships, social gatherings ect… I had been on FB and had some one criticism thrown my way. And your right it takes a lot of energy out of a person. It upset me so bad my Catapley kicked in and I feel asleep. When I woke I had decided to let it go. Your my inspiration thanks for all you are doing!
    Sincerely,
    Valencia Blake

    • julie on May 18, 2014 at 4:43 am

      Oh Velencia, you are so very sweet!! I was thinking of you writing this post because of how you took the energy from the Modern Family episode and allowed this to fuel your local news awareness efforts. I can’t wait to cheer you on next week!! Keep going – I’m cheering for you big time! Your friend, Julie

  1711. Lelia on May 18, 2014 at 12:01 am

    Julie,
    I absolutely love the timing of this post!! Not so long ago, I took a step back and asked myself, “Why am I so unhappy?” I instantly knew the answer, my job seriously stinks!! It is sucking the very life out of me and I don’t like the person I have become because of it.

    When I first took this job, I loved it!! As long as I could ignore my boss and his complete inability to understand Narcolepsy, I loved my job. What choice did I have? My symptoms, at that time, made keeping any job with strict guidelines almost impossible to keep. So for years, I have allowed this individual to pick away at me whenever he pleases and it has changed me. I am no longer happy and that’s unacceptable!!

    As I was contemplating what I should do about my predicament, I came across one of your Narcolepsy Not Alone posts on Facebook and it got me thinking. I am not the same sad girl with Narcolepsy that I was when I first took this job. I have changed, I am not alone and I don’t have to settle!! I can do whatever I want!! I WILL GET A NEW JOB!! I thought about everything you have accomplished, the struggles you have overcome and it gave me inspiration!!

    Within minutes, I applied for a new job doing something I’ve never done before. I received a call from the employer to take a test, which I aced!! I was called in for an interview, which I nailed!! I was still not chosen for the position BUT it invigorated me to keep trying!! It’s kind of like your one star review, I don’t have to let it get to me. It is only rejection if I feel rejected and I don’t because I did my best. That’s all any of us can do, be the best version of ourselves and happiness is sure to follow.

    Thanks, Julie, for all you do!! I am super proud of you and how far you have come. Keep up the good fight 🙂

    • julie on May 18, 2014 at 4:41 am

      What an inspiring story, Lelia – I sooo relate!! I’m so very proud of you for taking action and not getting too down by this first attempt to find a more supportive work environment. I’m so inspired that you are taking matters into your own hands to make positive change for your happiness AND health – because I believe happiness is a big part of health that we often underrate. You go girl!! Keep us posted!! Proud to call you my friend, Julie

  1712. Di on May 18, 2014 at 12:31 am

    I love your positivity Julie. It just shows how far away some of us are from some people who like to wallow in misery. Dodgy boyfriend? I don’t remember that; I shall have to read your book again and watch out for that bit amongst your tales of courage and positivity. Just shows we only see what our energy focusses on.
    I don’t remember much ‘feeling sorry for yourself’, but I do know you would be excused for elements of it, as they would need to be shown as part of the process for moving forward. I am a positive person, and I too felt quite sorry for myself, not so much about the narcolepsy as about the failure of medication to put my life back to normal. It is like a grieving process for the life you once had. Once I found my way past the misery that I ‘thought’ narcolepsy was going to ruin my life, and found natural things I could use to help alleviate symptoms, like meditation, proactive positivity etc. I found that people in the ‘support groups’ criticised me for my suggestions, so I moved away from them. Luckily, the few positive ones I met there, I am still in touch with through FB. What we need is a sense of hope, and that is what your book provides. Some people just aren’t ready for that.
    And as you said, you are in company with some of the best of them. All winners had criticism, it makes you stronger 🙂

    • julie on May 18, 2014 at 4:39 am

      Thank you for reading my post and leaving such a thoughtful comment, Di. I’m so sorry to hear that you experienced criticism online, but I’m so glad you found some positive people to add to your support network! So true that we see what our energy focuses on, what a beautiful description. Thanks again! Your friend, Julie

  1713. Julie Fain on May 18, 2014 at 3:50 am

    Way to take the high road and find a positive spin for that negativity! I had to deal with negativity in the form of online comments after True Life: Narcolepsy aired, and its so tough to deal with rude/negative comments like that. I can imagine its probably much more frustrating when its your own creative work, created with your own personal memories–yet you didn’t let it bring you down a single notch!

    I feel like I am always learning more about myself as a PWN and how to be a better one with every post I read from you. Learning to ignore/accept criticism is a very important tool to have. Thank you for continuing to be a inspiration! 🙂

    • julie on May 18, 2014 at 4:34 am

      Thank you for sharing, Julie. Oh gosh, my heart drops hearing that you faced negativity after MTV True Life… I feel like a protective big sister. I got your back, girl. I would so squash anyone for being rude to my sweet brave friend Julie! Thank you for your bravery and strength. Thank you for reading my website!! <3

  1714. Sparrow on May 18, 2014 at 5:07 am

    It is fascinating to me that someone read your book and saw their own struggle on the pages and instead of writing something like, “this book really resonated with my own experience of living with narcolepsy! Julie Flygare really captured how devastating the symptoms are and what a relief it is when we are finally diagnosed! I give this book five stars for so accurately and eloquently communicating what our life is like!” they chose to give the book one star because they didn’t think they learned anything new. *shaking head*

    Of course, if you had written something completely unlike their experience of living with narcolepsy, they would have given the book one star for “falling flat and completely failing to show what it’s really like to live with narcolepsy,” right?

    I find myself remembering a letter I read once. It was sealed in plastic and sewn onto a panel of the AIDS quilt — the last letter a young man wrote to his mother before he died. In the letter, he wrote about walking down the street on a beautiful sunny day when he came across a woman who was slouching along, obviously miserable. Wanting to spread his joy, the young man who was living with AIDS called out to her, “isn’t it a beautiful sunny day?!”

    She looked around sourly and replied, “it’s supposed to rain tomorrow.” And in the letter, the young man told his mother, “I may have only had one day of sunshine, but she had two days of rain.”

    Keep spreading your sunshine, Julie! There will always be those who insist on seeing rain everywhere they look, even on a bright, clear day. It is a sad thing. But they can’t steal your sun!

    • julie on May 18, 2014 at 5:34 am

      Sparrow – Is EVERY THOUGHT you have this beautiful?! I am amazed by your maturity and unique vision on life and honored that you follow and support my efforts. You brought tears to my eyes. I’m forever grateful! Sunshine sent your way from your friend in So Cal where the sun shines every day, Julie

  1715. Julie Barfuss on May 18, 2014 at 5:57 am

    Julie, I so wish I’ve had this book read. I am not a reader. I don’t make it very far without falling asleep. I do know this…there are many narcos who CAN read and I hear nothing but “well done’s” and “This helped me so much!”. You are a gift to the narcoleptic community. When I think “I want to do this with my life!”. And then I tell myself, “No….narcolepsy will just ruin it.”. But then I ALWAYS come back to, “But look at all Julie Flygare does despite narcolepsy. No excuses!”. You are an amazing example! And look at you, getting a bad review and taking it with a smile and optimism :). Love that!

    I remember when Remmie got her first “dislike”….it didn’t even bother or upset me. 5 years ago I would have been upset, lol…but, I know I put myself out there into the cyber world, in hopes to help others, knowing there could be “haters”. You have helped a huge narcoleptic community IMMENSELY! So, one bad review is nit a reflection on you. It says more about them than the book!

    • julie on May 18, 2014 at 5:55 pm

      Thank you, Julie B.! I cannot imagine anyone “disliking” Random Remmie – she’s the cutest!! Oh well, “haters gonna hate”. I’m so glad that I can provide an inspiring example for others with narcolepsy. You and your family are an incredible gift to our community as well. Big smiles and many thanks, Julie

      For those who haven’t met Random Remmie: http://youtu.be/riZUVxHuaWw

  1716. Crystal Parkes on May 18, 2014 at 2:28 pm

    Hello,
    My name is Crystal and my 12 year old daughter is being treated for both narcolepsy and catalepsy. She had the unfortunate onset of symptoms just before starting the 6th grade and has since been having emotional issues with dealing as many kids have made fun of her for falling asleep in class and almost falling when she laughs. I have talked to her about joining groups, however, she is not really positive about it. I wanted to find a young woman would would be willing to help my daughter through her own experiences and accomplishments and would love her to have a penpal through actual us mail. I know my daughter is kind and if she received a letter in the mail she would engage with them and yet I can’t get her to sign up on the online sites. Please let me know if you have anyone or know how I would set something like this up by emailing me at mrsparkes77@gmail.com.

    Thank you as I would be very grateful to have someone help her through this.

  1717. Anna on May 19, 2014 at 12:53 am

    What an inspiring post! It’s a truth easily forgotten. This reaches far past a book review– from sharing any type of art you create to sharing narcolepsy with others, someone is bound throw negativity on extensions of yourself. Personally, as an actor and writer, this post made my day! Finding humor and positivity in negative situations, even explaining narcolepsy to some people, has always helped me in the past, and your citing of Harry Potter’s 1-star is a great reminder of that…! Thanks.

    • julie on May 19, 2014 at 12:58 am

      Anna – I’m so glad you found this post inspiring. That was my hope. As a writer and actor, you are likely very familiar with criticism too. Just keep going!! Cheering for you. Your friend, Julie

  1718. Christopher Ingram on May 19, 2014 at 12:11 pm

    Hi Julie,

    As a writer for the video gaming industry, I’ve been attacked numerous times for things that I’ve spent long hours working on. Then again, I’ve worked extremely hard on some projects, only to barely get any feedback at all, which can be the absolute worst thing at times. You’re right though Julie, if you do decide to put yourself our there to the world, be prepared to recieve both good an bad feedback.

    An editor and friend of mine once gave me a fantastic piece of advice: “If you don’t like the feedback you recieve and don’t see constructive conversation as a probable going forward – sometimes the best thing to say is nothing at all.”

  1719. Alex Withrow on May 19, 2014 at 3:20 pm

    Whether you create or not, every single person should read this post. Amazing work here, Jules. And I SO love that you were able to transform this silly review into such an inspiring piece.

    “If you put yourself out there, be prepared for criticism – lots of it.”

    Yes, certainly. But, as you say, ever onward!! 🙂

  1720. Jaclyn on May 22, 2014 at 3:38 am

    Is there a way to get the grey narcolepsy not alone shirt?

    • julie on May 22, 2014 at 4:39 am

      Thank you for your interest in the grey shirts, Jaclyn! We will have those available again soon. 🙂

  1721. Phillip Satkowski on May 22, 2014 at 8:26 am

    Julie,
    I have recently read your book, I took am around the same age as you ( 32, I think that’s about the same ) and from Boston area and also went through very similar circumstances as you. After reading through the book I begged my family to read it as well so that they could understand what both of us have gone through and continue to go through. I bought it for my mom and she read it over the last few days and told my sister about it and she bought it for herself, I’m so glad that there is a resource like this out there because I could never put in words what I have experienced, however you are gifted in that area. My experience was very confusing as I am epileptic as well, reading your book however helped me to draw the differences between the two disorders, as my doctors have not been all that helpful. My mom even showed me this site and blog. I am so excited that you are advocating for narcolepsy, it has helped me so much. Thank You,
    Phillip Satkowski

  1722. Elaine Armstrong on May 22, 2014 at 6:43 pm

    Well done Letha,
    As I didn`t get to view it all ,what I did watch here in Ireland was really good. I especially felt your pain in the fact that it effects your childrens lives also and that you don`t get to be the Mom you want to be for them. This is also the toughest part of living with narcolepsy for me.
    Thank you for sharing your story and yet again getting narcolepsy out there.
    Your friend Elaine, Ireland xxx

  1723. Alison on May 23, 2014 at 10:30 pm

    I was just diagnosed in December and finally finished your book, SO glad I did (I’m in college- also an overachiever and also getting an art degree) and found it nothing close to one star, I cannot thank you enough for everything you do.

    But you do gotta give that guy some credit, your boyfriend did totally suck. I mean his relationship advice is great “how did she not realize what a loser he was? Why would anyone let someone treat them like that?”-Such Passion, I’m sensing the next Dr.Phil.

  1724. Ellie Burnley on May 28, 2014 at 2:30 pm

    So appreciate hearing “I’m not alone”. All of your triggers are mine exactly; especially when I smart off with some silly comical comment.
    I’m not feeling I have the right med for Cataplexy even after 40 years of dealing with Cataplexy. My first drug was premarin (now not available) and the Desipramine I’m on now just doesn’t hold me upright! No pun intended.
    If any of you would share what drugs you’re on to help control the cataplexy I would really appreciate hearing from you. To those of you who share this dang illness, my heart goes out to you. I will keep you all in my prayers. Email
    attached.
    eburnley@pressenter.com Wisconsin

  1725. Donna McVey on May 29, 2014 at 11:38 pm

    Hi Julie, I just read your post on how you met your current boyfriend. what a lovely story. If there are any other handsome gents out there who respect and understand what its like to live with Narcolepsy, let me know ! lol x
    I struggle with Narcolepsy at many levels and your blog is inspiring . I am also not keen to speak openly about having the condition at all, as i am a personal trainer and worry it would damage my business , your work to raise awareness is so welcome and makes me realise i have a responsibility to raise awareness too. x

  1726. makaylah on May 31, 2014 at 12:35 pm

    im 17 as of yesterday,was diagnosed last september and schooling was HARD! (jan.-may) second semester wasnt any better either , im currently behind in school due to failing 3 out of 4 classes my jounior year so im going into my senior year this fall ,3 classes behind, i dont know what to do so i can graduate on time next may,any suggestions?

  1727. makaylah on May 31, 2014 at 12:38 pm

    sorry, posted without relating it to the subject , my bad lol, was commenting because i have to start thinking about getting a job f i wanna go too collage and have $ next year and be able to move out and so on, and dont really know how to go about approaching that subject and pointers would be GREAT!!!!

  1728. Kelly on June 1, 2014 at 1:28 am

    Thank you so much for sharring all this information with everyone. My son is 18 years old and was diagnosed with narcolepsy his last year of high school. We struggled with school when he started high school. I thought he was staying up all night playing xbox and on the computer, so I would take everything away from him. The school was calling me all the time telling me he feel asleep in class. I would take eveything away from him by 10 pm, I couldnt understand how he was falling asleep in class. Every morning was a strrugle getting him up. He cant hear the alarm clock so I have to wake him. Boy did we have some fights. i would leave for work when I thought he was up. I would call him when I got to work and most of the time he fell back to sleep. I would have to leave work to go home and get him up for school. I finally took him to the dr and told them I need to know if something is wrong with him or if he really is a bratt thats staying up all night. He is on medicine right now but he still cant wake himself up. I see him struggle and I wonder how things will work out for him, he does curently work part time and has signed up for collage in the fall. We are working with his dr because he is sleeping 16 hours a day. The doctor tells him he needs to make himself get up. He tries very hard to explaine he can’t. I’m stuck in the middle because I can see what they are both saying. Reading what you have shared has made me think of questions I need to ask the dr. I’ll be reading your book hoping to educate myself so I know what my son is going through.

    Thanks,
    Kelly

    • Carmen on April 18, 2016 at 6:49 pm

      Reading your post was like reading my situation. My son was also recently diagnosed his Sr year 4/4 and it has been a struggle. He has been accepted to College and I am equally concerned about his ability to wake himself up since he also doesn’t seem to respond at all to even the LOUDEST alarm clocks. I want hi to have the best chance at success. Before his diagnosis, he was a 3.5 GPA student but since the increase of symptomology there has been a sharp decline. I wasnt sure what was going on, and even though it wasnt the news we wanted to hear (lifelong incurable disorder) at least we know its something and now its a matter of trying to help him. His first appt with a sleep specialist is at the end of this month. Hopeful for some treatment options and any input from any of you who have been there. Any suggestions for alarm clocks to help with independent waking. i wont be at his collage to wake him everyday. help?

  1729. Anja on June 11, 2014 at 1:32 am

    My son has seizures where his head drops.
    He was vaccinated with areprenrix with adjuvant during the ‘pandemic’
    There were some behaviour issues but we didn’t notice much until he started chewing on the collar and sleeves of his shirts. This was fall 2012… 2 years after the h1n1 vaccine. Immediately following a really bad pneumonia. At the time I called it walking pnemonia….because I was in rough shape but still walking. My son had it as well. It lasted weeks. Cough, chest pain, dizziness, you could hear the lungs struggling.
    His sleep, mood and personality seems to be affected. We are still trying to figure out the cause of his seizures. I think that it is auto immune.

  1730. Jill on June 11, 2014 at 2:48 am

    That’s the way to do it Julie!

    Enjoy your trip. That man of yours sounds like a keeper too! 😉

    Love, Jill

  1731. Wesley Osborne on June 11, 2014 at 3:30 am

    Hello My name is Wes When I lay down to get some sleep I awake paralyzed I can open up my eyes briefly but I cannot move I try and try to move I am aware of everything around me but I have to keep trying to move over and over until I finally am able to move its very scary Its been going on since I was a child I need help is it Narcolepsy or something else I have told my doctor about it he thinks I may be sleep walking no way I say I am not up moving around I an laying there cant move and I am not asleep I do not just suddenly go to sleep[ I just cant move (what’s going on?) please advise for its very spooky and getting worse Wes Osborne 928-219-0755

  1732. Brandi on June 11, 2014 at 8:18 am

    I have a 7 year old daughter with newly diagnosed narcolepsy. At first doctors said autism, then further test resulted in narcolepsy. Her neurologist says “I’m not a sleep doctor, but take these pills it may help” lol WHAT! We are waiting for an appointment with a new doctor. Gabby has been in kindergarten for two years, with not a lot of success. She falls asleep at her desk, singing in school performances, on the bus and at the dinner table. I’m going to start your book ASAP. I strive to help us understand and learn to live with this. Thanks for speaking out.

  1733. Arnold Gendelman on June 11, 2014 at 8:38 pm

    http://www.soundstrue.com/weeklywisdom/?source=podcast&p=9657&category=IATE&version=full&loc=weeklywisdom

    Hi……listen…….I thought of you Julie listening to the interview.
    Another champion hurdling over the high bar with ease.

    Bring bug spray, Clorox hand wipes. Use it everywhere. On utensils, cups and commode seats, no kidding…sorry but better safe . I spent seven years working the Caribbean. I know. This is high dengue mosquito season. Ask your doctor if you can manage Quinine tablets. He will tell you how to prepare yourself. Forgive me but, ask your doctor if you are current with tetanus shots. You know to drink and brush your teeth with bottled water. If the heat gets to you shake a little table salt into the palm of your hand, drop and mix in a glass of plain water. You could stand still on those islands and dehydrate. The island is a paradise, quite primitive in some parts . Enjoy every moment. Rest well, sleep well, travel safe….and smart.
    WE LOVE YOU☀️

  1734. Arnold Gendelman on June 11, 2014 at 9:05 pm

    You’re still laughing

  1735. Josh on June 12, 2014 at 11:32 pm

    Julie,

    I was recently diagnosed with Narcolepsy at the age of 23. I was becoming depressed before my diagnosis due to the fact that i would lose consciousness driving and was having increasing difficulty functioning throughout my day. Your blog helped empower me and give me confidence. I read your story and recognized myself.

    Thank you for the support and courage.

    I would like to point out, however, that though uncommon, the stereotypical Narcoleptic symptoms can occur. Often times I found myself looking just like the pictures at the beginning of the article. It took several years of my symptoms increasing in severity until I began falling asleep driving, talking, walking and eating, but at my worst it did happen regularly along with most of the other mentioned symptoms.

    Thankfully, my job was understanding and my wife a supportive angel, so even at the worst I was able to get by. I am so grateful to your work and your blog for the network of support.

    I now realize that we are not alone. Thank you!

  1736. Kellie on June 14, 2014 at 4:16 am

    As a senior in high school with Narcolepsy, it’s really hard to find someone who really gets it- who doesn’t just think of me as being like that guy from Rat Race who falls asleep on his feet, make jokes about me falling asleep in class, or just thinks I am exaggerating and need to have more self control. This essay, really this entire website, has been so refreshing and so comforting. You basically summed up all of the things I try to describe but often find myself unable to explain. I honestly thought that no one understood what I am going through. Thank you so much for showing me that I’m not alone and that someone else feels the same things I do. You are so inspiring, and I will probably be on this website every day. 🙂
    ~Kellie

  1737. Ellie Burnley on June 16, 2014 at 3:03 pm

    This page past me somehow. It’s very well written – families should pay attention for this disease in one of there loved ones.

  1738. Lori Bishop on June 16, 2014 at 5:47 pm

    Finally! Someone who can put into words the way I feel. I can’t waqit to read your other posts!

  1739. Melissa on June 17, 2014 at 6:45 pm

    Julie,
    I was diagnosed with narcolepsy about 7 years ago. I thought I was just overstressed. I was not my normal self and I knew it. I believe I had it even through college. I would experience ab driving my 7hr drive back home. I would get upset because I couldn’t remember driving through multiple towns. Teaching was overwhelming for me being undiagnosed. I gained so much weight trying to snack to stay awake to grade papers or do lesson plans then to realize I graded those papers in ab mode and would then have to recheck them. My friends were getting upset with me. My parents thought I was just mismanaging my time or being lazy. It was one friend who is a pediatrician that told me she thought I had narcolepsy and even though I had told my doctor already she told me to go back and tell him I wanted a sleep study. I did and as much as I hate narcolepsy, I was relieved. I wasn’t just being lazy and I had an answer finally to why i felt like i did. I now could get something to help me. I still struggle with guilt that I shouldn’t feel. I try to explain to my co-workers but I don’t think they understand completely. I have been told it’s all in my head. I have lost relationships with people I really cared about telling me my narcolepsy and safety would worry them too much. I get frustrated by people who try to limit me because of my narcolepsy. I don’t want it to keep me from doing whatever I want to do even if it might mean making a few alterations by adding a nap here or there. I want to be able to say I have narcolepsy but it doesn’t have me. The meds I’m on make a huge difference. If overly tired or stressed I still experience mild cataplexy. My facial muscles will slacken, knees buckle slightly, I might drop stuff but now this only happens on rare occasions. I also still occasionally experience eds sometimes at work. I just get kinda dazed and will usually experience ab. I wouldn’t be able to do the things I wanted without them. My memory is one of my biggest frustrations currently. It’s nice to be able to find others who know what you are going through especially those times you feel those around you don’t understand. I can get very defensive about narcolepsy and don’t appreciate all the jokes about it. But I can find humor in it which I think helps me cope. When asked about my narcolepsy my first response is usually “Yes, I can eat soup! ”
    Thank you !
    Melissa

  1740. Arnold Gendelman on June 21, 2014 at 6:16 am

    Julie you are the greatest.
    So encouraging for us who have been there done that “before diagnoses.”
    Now I know I’m not crazy, I’m just a NORMAL PWN like you kiddo.
    Isn’t that terrific! You bet you are.
    Keep up the wonderful work you are doing for us all.
    It is you and your coy eagle that keeps us going too.

    Love ya,

    Arnold

  1741. Elin B on June 21, 2014 at 9:18 pm

    Julie, I can not say how grateful I am for the work you are doing reg narcolepsy. Thsnk you, and thank you again. Hugs 🙂

  1742. Mark Patterson on June 22, 2014 at 6:17 pm

    Thanks for jumping on this so quickly! The ad is supposed to be released this coming week, so my purpose in notifying everyone was to try and get the ad modified or cancelled before that happened. Once it is out on TV, it is hard to have people ‘unsee’ it, further fueling the public misconceptions about narcolepsy. Together we can do amazing things!

  1743. Mary Smith on June 22, 2014 at 6:56 pm

    You know if this commercial was offensive to someone in regards to race, then the media would be all over it. I can tell you that it is just as hurtful for those with narcolepsy. My son has narcolepsy and has struggled in college the past 2 years because of it, and now has lost his federal loans because he has struggled. I don’t know what to do now. Where does he turn? What will he do? I can tell you that it has ripped his confidence and all he wants is a shot to do something better with his life. Watching a commercial make fun of our situation really hurts me. What makes this commercial even more hurtful, is that my husband is employed by Honda. Wow.

  1744. Mark Dodd on June 23, 2014 at 12:54 pm

    This “advert” and things like the recent Modern Family episode make it apparent that disability vilification laws are required. There are laws to protect against racial vilification. People with disabilities exert a lot of energy and time trying to overcome misconceptions and urban myths about their conditions. Allowing advertisement like this to air undoes a lot of the hard work the awareness campaigns do. They also ensure that the disabled have to fight another round of misconception from friends, family and employers. I do understand than many people with narcolepsy do not regard it as a disability but it is by any definition. Disabled does not mean incapable.

  1745. Cynthia on June 23, 2014 at 9:00 pm

    OMG this sums up what i have been feeling for so long . I could not explane it better than that . I have just been DX with this June 12 2014 but have had this my whole life but it has gotten worse over time form 2011 till now it has caused somany peoblmes with my love life my hubby to be has said he was going to leave beacsue of my sleepy self .

  1746. delayed2sleep on June 24, 2014 at 12:13 am

    Too bad they removed the comment section below the original video; there were some really great comments (and, I think, just one flippant negative one). Yes, congratulations to us all. Good luck on your follow-up with Honda, Julie.

    • AaronBale on June 24, 2014 at 1:57 am

      Surely some PWN archived the comments? C’mon guys, we’re doing the ball here!

  1747. butters on June 24, 2014 at 11:56 pm

    Honda lied. The aid just aired during Iron Man on Spike TV

  1748. Arnold Gendelman on June 25, 2014 at 5:25 am

    Hurray, Hazzah, Mozeltov, but….not just yet.
    Until Honda shuts it down world wide, it is spreading bad news for PWN.

  1749. Vinodh on June 25, 2014 at 8:11 am

    Hey Julie,
    I congratulate you for creating this blog and helping out people.
    It’s good to connect with people who has Narcolepsy so that we can support each other.
    I am Vinodh from India, I am living with this for the past 5 years and finally I got diagnosed about a year back. I have faced all the problems along with the embarrassments that everyone of us face and now I am a post graduate in engineering.
    My friend supported me saying ” Do sleep when ever you want and read only when you are awake”
    “When all my friends read I slept and when all all my friends slept I read”.
    What we all need is just to support each other and for that I am here with Narcolepsy, NOT ALONE.

  1750. delayed2sleep on June 25, 2014 at 2:09 pm

    Bad news. I don’t know if you, Julie, are a member of the Facebook page “Sleep Disorders Support and Advice”. A member there, who’s also a sleep tech, wrote about 7 hours ago: “WTH??!! I JUST SAW THE AD ON TV like A MIN AGO.”

    I’ve asked him to add some details: date, time, place, tv station and maybe the program it appeared in. If I get that info, I’ll let you know.

    • julie on June 25, 2014 at 2:13 pm

      Yes please let me know. We are sending in all airing details to Honda to ensure they are removed.

      I’m in contact with Honda: “Julie, We have sent specific instructions across our network to not run Synth and Seattlieites. Unfortunately a few stations did not get the message in time. We have heard from folks directly and through social media and now have the ability to take specific action with the stations that did not pull the ad. Thank you and thanks to your team of folks who are able to be be our eyes and ears so that we can follow up with those who have not yet gotten the strong word about the ad. We have taken legal action against web sites that have taken our ad and are running it against our instructions and will reach out directly to TV networks today to ensure that this does not happen again. Again, none of this has occurred intentionally. We understand the sensitivity and are doing our best to communicate with all of our partners, agencies and networks ASAP.”

      I will continue pursuing this to ensure it is followed through on along with my educational offer to speak at Honda as a first step toward bridging this effort together with Honda. Thank you for catching the ads and supporting this effort!

      • delayed2sleep on June 26, 2014 at 7:58 am

        Hallo again.

        Re: my post above. He says it was just a minute before he posted, that is about 7 hours before my post above. He writes: “think it was home improvement channel, hgtv? house flippers show..”

        • delayed2sleep on June 26, 2014 at 1:44 pm

          And he adds (after I told him that you are grateful for the info): “Nice, if it makes any dif, i have TW cable and im in SoCal.”

  1751. Erin on June 26, 2014 at 12:44 am

    Just sent mine! Thank you for being a constant source of inspiration, Julie!!

  1752. Chelsea on June 26, 2014 at 7:48 pm

    Julie,
    You have this way of touching my life, and you speak the words of encouragement, understanding, frustration, motivation, (and on and on) that I need to hear. And I mean “need” to hear, not always what I “want” to hear. You keep it honest and fresh.
    Julie, you are what I aspire to be, strong enough to be vulnerable, a faithful advocate, a beacon of light and hope to someone like me, who also lives in this dimly lit world of narcolepsy. You have the courage to see and speak about the good, without diminishing the hardship. I believe in every situation (even the most dire) there is_some_ good that can be extracted from it. Some situations require a magnifying glass to find it, but when you do, even one seemingly minuscule thing can redeem an enormous hardship.

    I can’t tell you how many times you have held the magnifying glass for me and helped me find the redemption in my struggle. And doing so, enabled me to take back what I thought I had lost forever… hope. Hope for a full life, even with Narcolepsy and Cataplexy.

    Thank you so much Julie!

  1753. JuDee on June 28, 2014 at 7:24 pm

    Julie, I had made this comment on the Narcolepsy Support Group on Facebook. It must have been deleted by one of the moderators.
    I am not trying to be critical or mean. I just don’t think this latest shirt depicting the Holly Hobby looking girl in pajamas is what I want people to think of when they hear the word Narcolepsy. The girl is cute and sweet. Narcolepsy is neither of those. The girl stands alone…that is not what the message says Not Alone! I feel that the original shirt you used in your Narcolepsy Not Alone campaign is much better fitting to the PWN community, both male & female. What is the correlation between this young child in pig tails and pajamas and the condition of Narcolepsy?What is the message that you intended for this shirt to convey?
    You have done an over the top job at bringing about awareness to the condition of Narcolepsy. I am truly in awe of you and your accomplishments. You are a great inspiration to me…the reason why I began running again after 15 years, the reason why I recently enrolled in a Spanish Language class, the reason I decided that “I have Narcolepsy, Narcolepsy does NOT have me.”
    Please don’t think I am just being angry because I am definitely not angry. I simply expected more from an advocate who is personally aware of this disease and knows that we PWN are so much stronger then a pig tailed, pajama wearing character.
    Respectfully,
    JuDee Janowitz

  1754. Ly'Nae on June 30, 2014 at 5:31 pm

    What a blessing to have been diagnosed when you were. My children were older 8th,5th ,2nd grades. I had my first child at 21. I was not diagnosed until my 30’s. I will soon be turning 45. I also went to different doctors and counselors put on anti-depressants because I am sleeping all the time. Dahhh who wouldn’t be with 3 kids and a husband working swing 12 hour shifts not understanding why are you tired staying home all day and me not understanding myself. But the overwhelming quilt I felt for not taking my kids to the park or going outside to play established the foundation of quilt and destruction of my self esteem I have spent years trying to regain. we would be on our way and a sleep attack would . I felt guilty about everything my daughter didn’t do well on a spelling test it was because I fell asleep trying to study with her. Not to mention the issues it caused with my husband.
    When I was diagnosed I was sooooo happy to find out I actually had something.
    I started taking provigil and was told it was ok for me take a nap I had not realized how limited my existence had been. The first time I drove to my daughters basketball game I was extremely excited because If I could help it I never drove 15- 20 minutes from my house for fear of what I know now was a sleep attack and getting stuck in traffic was literally torture. It affected every area of my life to where I went, what type of jobs I applied for, and at times job performance. I remember getting reprimanded for falling asleep during workshops. I also remember my mother telling me in 5th grade that my teacher called and said I needed to go to bed earlier because I was falling asleep in class.
    My journey with Narcolepsy has been long one and I appreciate blogs like this because when I was diagnosed you rarely heard mention of Narcolepsy. Along with some other issues such as ADD and Sleep Apnea. I have to constantly remind myself I am not just lazy or unorganized but these are legitimate disorders and need to be taken seriously. I am very grateful for the people in my life that are supportive and understand I am not making excuses or using these things as a crutch….
    I am grateful to those that share their stories. This has inspired me to make others aware of Narcolepsy. So I often I get from people I fall asleep all the time too. Or from professionals I had a psychology teacher tell me I think that is insomnia or something else. Really? I moving forward taking classes and living my life. I’m going with the 40’s are the new 20’s. And I’m like fine wine getting better .-) Going to take a nap now…. just kidding 😉

  1755. Jennifer on July 1, 2014 at 5:45 am

    You vocalized so well how I feel most days! It’s also a struggle that many in my family view me as ill.

  1756. Heather on July 1, 2014 at 8:17 am

    Go Xander!!!!!! Cool name as well Xander – my son, who has narcolepsy, has a ‘X’ name too: Xavier. He’s a musician. Go the ‘X’ Factor kids!

  1757. Rebecca on July 1, 2014 at 1:19 pm

    Thank you for this! I have IH, not N, and I REFUSE to call myself sick or ill. I have a condition that I live with and power through, not suffer from. When I have the flu or a bad sinus infection, then I can be sick 🙂

  1758. Sharon on July 4, 2014 at 4:59 am

    I am so glad to have stumbled across your writing! Just kept saying, YES, as I read your description of signs of sleepiness. In our house, I can usually muster the words ‘Angry Bear’, which serves to desribe and warn everyone that I am my exhaustion is getting to the irritable grunty, gruff, abrupt with my words stage. At that point, my cognitive reasoning is pathetic so it is helpful to be told to just give into the sleep. I can go to sleep as angry bear, and wake up 15 minutes to an hour later, all sweetness and light. You touched on automatic behaviour. I jokingly call it, Mom-After-Midnight, who sometimes takes over, and will do research online, eat all of the ice cream in the house, and sometimes even bathe. Evidence includes puddles of melted ice cream on the floor in the morning, smears of chocolate around my mouth when I look in the mirror in the morning, and throughout the day surprising myself with vague recollections of facts or images I saw when I should have been sleeping. I do have some awareness that I am awake but am on autopilot and can’t chart my own course, if you know what I mean. Sometimes I wish there was a Help button I could push so my family could just guide me into bed, without having to verbalize, which becomes difficult. Do you ever wish there was a battery indicator on your forehead so your loved ones could see where you are, energy, cognitive processing, verbal fluidity wise? Thanks for the awesome descriptions, I will share to spread understanding. I believe Narcolepsy has gifts too, but I am still waiting to fully unwrap some of them.

  1759. Sharon on July 5, 2014 at 1:05 am

    Though I did not have a diagnosis for N when I got pregnant at 25 and 28, I had been batttling the gamut of symptoms since the age of 17. My experiences being pregnant and as a mom: When I was no longer able to use stress and pressure at a busy, frenetic pace of work to stay awake, I struggled emotionally…it really hit me how fatigued and close to sleep I was, when I was home with my first baby. The quietness, lack of chronic stimulation, slow pace made me feel like a zombie. I defeated this as much as possible by forcing myself to sign up for volleyball, mommy and me music classes, going for adventures to the zoo, developing mommy friendships. When I had my second, my oldest was 2 and a half and bless her heart, she made me feel normal, because she did not know any better. My body hurt much of the time, my bones ached and my skin burned, from exhaustion. The pregnancies were both healthy but I did have a lot of morning sickness all day long. I think it actually helped me to assume that was part of why I felt so wiped out and quiet on the inside, I remember feeling very vulnerable. When the kids were really little, one of my mommy friends remarked that I seemed to contend with the usual ‘having young kids’ sleep deprivation better than anyone she knew. It was because feeling sleep deprived and exhausted was my constant background, the difference was less for me to grow accustomed to than for her. I already mastered that. So to anyone new mom with N who is scared, you’ve got this. All the other moms are going to be adjusting too, but you probably already have some secret coping skills of your own! YOU WILL FEEL GUILTY. Welcome to Motherhood. Try not to be too hard on yourself. It is going to be okay. The N is permanent but the neediest stages of infancy will soon pass, and you will miss them. Nap when the baby naps. Teach your kids from a young age what they need to do, and reward or reinforce it. When I needed to close my eyes, I would put on their favourite show, have my toddler sit on my feet and my baby on my chest or in the crib, while I napped on the couch. The great thing is that kids will keep you going, because they are needy and hungry and hilarious, and you will actually find your groove, because they will regulate you…they will keep you on a schedule. Forgive yourself for being human, and know that everyone struggles with something. And never, ever, compare yourself to moms with clean houses and boundless energy- they are jacked up on coffee and secretly hire cleaning help. Your kids will grow up with more empathy, compassion, and humour than you can imagine. Enjoy every second, and trust that your heart can handle all the joy and challenges ahead! Pace and brace yourself!

    • Holly Luke on March 22, 2018 at 2:17 am

      Your story brought me to tears (reading it nearly 4 years after you wrote it). There is too much to even mention… but your words have been a blessing to me as I try to navigate this new world of wonderful and scary possibilities. My husband and I decided, God willing, to starting a family. With my severe narcolepsy and the high dose drugs used to manage my symptoms, I am extremely anxious about the likelihood of being left to cope without them. Being pregnant is one thing, but caring for my precious blessings once they are born is what truly worries me. I trust God will never give me more than I can handle, but stories like yours make my heart happy and give even more hope about the future! God bless you and your sweet babies, for they are seriously blessed to have a mother like you!

  1760. Erika B on July 7, 2014 at 4:51 pm

    I was diagnosed right before college graduation in Jan 2000. I went on to graduate school but stopped when I found myself behind the wheel trying to commute to Boston from Warwick after working full time days. Despite medication I was sleepy and it caused depression. Years later I married, had a baby and decided to try again. I graduated last spring (2013) with my Master’s in Counseling and currently work in community mental health (as I have since I was a teen.) I tell my clients just because you have a brain disorder, it does not define you. You are not your disability. You just happen to have one. You can do anything you want to. You might just have to circumnavigate.

  1761. Marga Kritzinger on July 9, 2014 at 8:55 am

    Hi Julie

    I am curious – if we join the campain, do we get to see who our fellow Narcolepsy: Not Alone friends are, especially in our country? I am from South Africa and would love to be able to make contact with fellow PWN in SA 🙂

    Thanks! Marga

  1762. Donna McVey on July 10, 2014 at 11:03 pm

    This made me laugh, Julie . I think of this contradiction often. Today, I had a sleep episode, attack, what do we call them? OK, I was hijacked by sleep. I overslept this morning, causing me to be embarrassed and late for my first client. By the time lunchtime came, the sleepy ninjas were out to get me and I couldn’t function. I set my phone alarm for 40mins. 1 hour later a phone call awoke me from the reality dream state in which PWN attempts to sleep. Waking with the ‘woolly-hat-on-my-brain-drunk’ feeling’, I was determined to follow through my plan of cycling to and from work in the glorious Scottish sunshine.
    I took my modafinil, hopped on the bike & thought, “I’ll show narcolepsy who is boss! ” 80 mins later I arrived at the yoga studio for my personal training client, followed by a short cycle to teach a 45min Spin Class (delirious at this point, lol) followed by a 90min cycle home. On the way home at points I wanted to cry, but like you I have run marathon and we know how that goes! I should be in bed asleep right now, but I am bug-eyed drugged awake with a pounding headache. I know I will also pay for it tomorrow and have to take full dose of modafinil just to get through the day. I have a full schedule til mid afternoon and I will probably be hijacked by sleep more than once, the muscle soreness will be excessive, the fatigue will double over the next few days, but I won’t give in! Some days the wake/sleep hijacker will win, but today was not one of those days & it was a beautiful summer’s day! I wanted to feel normal!
    We are not sick, we are simply living in the twilight zone that is PWN ! #narcolepsynotalone

  1763. Christine Ho on July 11, 2014 at 5:23 pm

    Dear Julie,
    I am very inspired with everything you’re doing for the narcolepsy community. I have no one to reach out to and feel you are the best person to talk to about a dilemma I am going through. I have concerns about getting narcolepsy accommodations from graduate and professional schools. I am currently applying for narcolepsy accommodations to take the MCAT and was recently asked to provide additional information after having to appeal multiple times by the AAMC (Association of American Medical Colleges) for not being “disabled” enough to receive sleep break accommodations. Before I had narcolepsy, I had learning disabilities and was given my time accommodations. However, when I was diagnosed with narcolepsy, I discovered I was able to get the same accommodations and my testing accommodations were never changed. But ever since I’ve been applying for MCAT accommodations, the director is very ignorant, I believe to how narcolepsy actually affects learning and for years, the AAMC have been stringent on providing accommodations. My MCAT date is coming up soon and again the AAMC director has asked for additional documentation after I’ve submitted nearly 20 different evaluations showing that my learning is affected. The paperwork is vigorous and the wait is very long. I know that without accommodations, I cannot sit for more than 30 minutes without falling asleep or getting sleepy. Thus, I’d lose concentration in high periods of excessive sleepiness. I know there is a lot of ignorance that the AAMC has with narcolepsy as a whole and not a lot of sleep doctors I know are very active to help me fight the AAMC so I was wondering what you would do in this situation? I’m currently gathering research articles, having my sleep doctors write stronger letters and I’m making a personal statement to educate the director. However, I don’t know if I’ll get a 3rd request by the AAMC to provide additional documentation when I’ve provided everything I have. I thank you greatly Julie for everything you’re doing.

  1764. Tim Rutledge on July 11, 2014 at 8:23 pm

    Thanks for sharing your drug holiday experiences, Nikki. You’ve motivated me not to neglect my own drug holidays, and to approach them more light-heartedly.

  1765. Natalie Kwadrans on July 12, 2014 at 6:06 pm

    Julie – this is such great news. We own a Honda and were considering buying the Odyssey next year, but when I saw their ad, we started rethinking our decision. I’m really pleased with the outcome of the survey. Honda did the right thing by pulling the original ad and proved to be an extraordinary corporate citizen by offering to do the PSA spot for Narcolepsy awareness. It makes me proud to own their vehicle and the Odyssey is definitely a top contender for us as we expand our family.

    Thanks again for your hard work on this. You truly are a great advocate for Narcoleptics across the globe.

    • julie on July 12, 2014 at 7:21 pm

      Thank you for this great comment, Natalie. You are so eloquent – you said it better than I could have: “Honda is proving to be an extraordinary corporate citizen”!

  1766. tam kozman on July 16, 2014 at 4:35 am

    Such fantastic news! Lemonade out of lemons, indeed. Will this PSA air on television?

  1767. Nick on July 29, 2014 at 5:24 pm

    Honestly, I found being diagnosed with narcolepsy a positive and exciting event! I’m in my 30’s, very physically active, and fairly successful, so when I was diagnosed I thought to myself, “I was already very happy with who I am and what I’ve achieved, and now I get to take an energy pill… Awesome!”

    I view my sleep spells (as I call them) as barriers that I must persevere through in order to move on. Even though at times it is like an unrelenting force that requires an unbelievable amount of willpower to prevent, I press on. The introduction of modafinil has lessened the weight of those barriers, so now my willpower and determination can be directed at more constructive activities rather than maintaining alertness!

    I never thought I’d ever be able to step on a plane without my brain telling me to shutdown the instant I sat down. Now I can stay awake and read a book, do some work, or watch a movie. In my world that gains me over 100 hours a year! When you view time as one thing you have the least of, how could you see such a diagnosis other than awesome!

  1768. Arnold Gendelman on August 1, 2014 at 3:17 am

    http://remotecontrol.mtv.com/2013/09/03/ridiculousness-disco-nap-sneak-peek/
    Julie—-here’s another you might be interested in taking to task.
    Surfing for news today I caught this, researched it, found it and you got it.
    Where do these jackasses think they are going with slamming a disability?
    Love Ya
    arnie

  1769. Katie B on August 3, 2014 at 6:13 pm

    I just read your post on the National Sleep Foundations website, and WOW! I do the slapping thing! I started laugh-crying when I read that. I am getting a sleep study done here shortly, and I am hoping they find out EXACTLY why I am so tired. I fear it is narcolepsy, which is scary because there is no cure. I’ve already taken adderall and adipex, both of which worked only for a few months. Its just scary to think that I’ll be like this for the rest of my life. Its been 10 years since I started experiencing EDS and its been a very sleep decade. Its nice to know there are other people out there that have experienced the same thing!

    • julie on August 23, 2014 at 5:41 pm

      Hi Katie, I hope the sleep study goes well and you find answers soon. I promise it gets more manageable with time. Sending wakefulness and smiles your way, Julie

  1770. Arnold J. Gendelman on August 4, 2014 at 10:01 pm

    Julie…….you are accomplishing what, what myself and every PWN has dreamt of experiencing, the PWN’s “Impossible Deam.” I think of your accomplishments remembering the production 1776 on aboard way and film. The young lost, confused soldier on the battlefield on his knees singing “is any Body There?”——-
    The power of that moment is your accomplishment. You answered it. You are driven, empowered to answer the question for us all and everywhere.
    You have earned your wings. You make us proud. You make us smile. You make us get up and be the dream. For me, selfishly , I am thankful and glad you are there, doing what I cannot do, for myself and others. Julie ……FLY—-we love yoy kiddo.

  1771. jusclaire on August 5, 2014 at 8:55 pm

    Julie

    I am.sure Dr Mignot, as a responsible scientist, would have tested and retested his theory before his Dec 2013 publication. It is a little strange that he cannot now reproduce said results. It is also strange that researchers elsewhere are sticking with their own findings.

  1772. Alison on August 7, 2014 at 4:48 am

    Just diagnosed in December and haven’t really met anyone else with diagnosed. I live in Florida so I’ll be there and am super excited!

    • julie on August 23, 2014 at 5:37 pm

      Alison, Looking forward to meeting you soon!

  1773. Rebecca on August 7, 2014 at 6:06 pm

    This is thrilling Julie! Good luck as you rehearse what I know will be an
    eloquent and inspiring talk. Any chance I could sneak in?

  1774. Melanie on August 8, 2014 at 1:44 am

    Julie, I am sure your speech will be amazing! Good luck 🙂

  1775. SleepNow Hopefully on August 8, 2014 at 9:21 am

    “Burning eyelids”

    Made me smile because I’m so used to it that I never thought about naming it.

  1776. Scott on August 8, 2014 at 4:59 pm

    After looking at the photos from Atlanta I noticed that there was no teens at the conference. Our daughter is 13 and was diagnosed with narcolepsy and all that comes with it when she was 11. Is there a conference that caters to young people ?

  1777. Melissa Hill on August 8, 2014 at 5:29 pm

    Julie,

    Another fantastic post. Thank you! I plan on sharing this, especially with my family members who are in absolute denial since my diagnosis after my brain injury 2 years ago. Since most live on the east coast 3000 miles away, it’s not usually a problem as I have little contact. However, my sister (the one you met) is getting married in October out here and everyone will be flying in. I think a little preparation before hand will be helpful. They are still of the thinking that narcolepsy isn’t real, I’m not really “sick” and (as my husband, sadly, STILL says) “if you’d only go to sleep earlier, you wouldn’t be so tired during the day”. Ah…if only it was that easy, right? However, I live my life now on my terms, and surround myself with loving, supportive people who “get” me (even if my own husband still doesn’t). And that’s thanks to YOU. You probably don’t remember this but the last time you were here, you said something out on my patio that really stuck, even if it seemed only a passing comment. You told me that it was OK and even that I DESERVED to feel validated for everything I’m either going through or the WAY I’m feeling about everything I’m going through. You also made me realize that instead of feeling guilty for no longer being able to earn the money I used to or do the things I used to be able to, I should be feeling very proud for the way I’ve handled my “new normal” and still take care of my child, my house, my mother-in-law, etc. And I should not blame myself or feel bad about myself if I can no longer live up to others’ expectations, as those expectations are THEIR problem. Do I live up to this everyday? No, of course not. I still struggle with guilt and feelings of unworthiness. But now I no longer struggle in silence or alone. I am the very definition of “Narcolepsy Not Alone” and I thank you for that wonderful gift.
    xoxo (miss you girl…let’s plan a “play-date”!)
    Melissa

  1778. Shara Claybrook on August 8, 2014 at 10:29 pm

    Hi Julie!

    Where do I begin?!? THANK YOU, THANK YOU, THANK YOU…..
    My daughter was diagnosed with Narcolepsy without cataplexy in January of this year. She was just starting middle school (6th grade, age 12) when the teachers started calling questioning my parenting skills related to her bedtime… “what time is she going to bed” they would ask. I would answer, “usually 7pm… she sleeps until 6-7 a.m the next morning!?!”….
    That is where our journey began in terms a diagnosis. I was thinking sleep apnea because she has always been a sleeper…she just wasn’t rested after sleeping. I mean, no one sleeps unless they need it? LOL After multiple physician referrals ( 6 months worth) and my insistance that there was “something causing” the symptoms we were experiencing, we received her diagnosis!
    Now what? I cannot tell you how many hours I have spent researching this disease, 504 plans, medication options, etc.

    You and your website info should be handed to anyone diagnosed with Narcolepsy!

    With that said, you have further energized me in knowing that Advocacy is key. My daughter is now 13, we are still working on her medication, we are now at a different school (Different school system, altogether) and I feel so fortunate just knowing that we have information, we have options, and we have control! We just have to bring everyone else around us up to speed 😛

    For Valencia that posted in April 2014…. I work as a Human Resources Director, and much like the 504 plan in schools, there are some Federal Acts that protect you as an Employee. Since Narcolepsy in recognized by the American Disability Act, you may qualify for some work accomodations as well as Family Medical Leave Act that protects you job if you need to be absent or late due to your medical condition! I’m not a blogger, but I am more than willing to share my insights 🙂

    Julie, you are a Angel… I hope to meet you at the NN convention in Denver.. Keep doing what you are doing and being a resource for us all!

  1779. Suzy on August 11, 2014 at 5:59 am

    YAY! I am so excited for this. Cannot wait to meet some people like me (and have an excuse for a holiday).

  1780. Martin Johnson on August 11, 2014 at 4:32 pm

    Re Comments by Mark Patterson MD PhD
    According to The Vaccination Awareness Network…
    “During the 2009-2010 pandemic influenza season many Canadians were injected with Arepanrix™ H1N1 vaccine with AS03 adjuvant, manufactured by GlaxoSmithKline; another GSK vaccine, Pandemrix™, a slightly different version of Arepanrix, was used in Europe; it also contained the very potent AS03 adjuvant.”
    Also, “The Public Health Agency of Canada acknowledges only five reported vaccine-related cases of narcolepsy in children and three in adults. One study examining all narcolepsy and cataplexy cases diagnosed between January 2009 and December 2010 in the province of Quebec, the only Canadian jurisdiction which keeps records on narcolepsy, concluded: “Results are compatible with an excess risk of approximately one case per million vaccine doses but a confounding effect of the pandemic virus infection cannot be ruled out.” Edmonton paediatric sleep specialist, Dr Manisha Witmans usually treats only two narcoleptics per year. But within the last year and a half, she’s diagnosed ten cases and arranged tests for a few more. Not only that, but the cases are also more severe and more likely to suffer cataplexy as well. She knows of similar surges in Toronto and some US cities.” PLEASE NOTE: “Quebec, the only Canadian jurisdiction which keeps records on narcolepsy”
    This becomes more interesting when we read “Also, since questions had arisen about the advisability of using both seasonal and pandemic vaccine, Quebec chose to not offer the seasonal influenza vaccine during the 2009-2010 influenza season. Considering these points, it’s an enigma just how GSK’s study will be “more robust” than those conducted in Europe using Pandemrix™!”
    So, In summary, The Public Health Agency of Canada acknowledges only 5 case of vaccine narcolepsy in children and 3 in adults despite actual evidence from sleep specialists. The figures presumably come from Quebec, which is the only Canadian jurisdiction which keeps records on narcolepsy, yet this province chose not to offer the seasonal and pandemic vaccines. So not entirely surprising that the numbers of people who contracted narcolepsy and cataplexy are somewhat skewed.
    As a 58 year old whose life and business have been devastated by contracting narcolepsy and cataplexy following vaccination in 2009 I would very much welcome some clarity from the Canadian Government and some form of recompense considering I can no longer leave my home by myself.
    BTW Julie, keep up the great work…you give us all hope & inspiration!
    Sincerely,
    Martin Johnson
    519 207 2005
    mjsjohnson@rogers.com

  1781. Beth on August 11, 2014 at 6:35 pm

    Dear Julie
    I read a recent blog article(?) that you wrote discussing people’s reaction to your narcolepsy and wanting to somehow “fix” you with prayer or yoga or whatever.
    I really appreciated your response and your comments about living in a culture that is uncomfortable with struggle or difficulty of any kind. I think you are courageous and resourceful in dealing with your particular struggle. I wanted to give you a resource about living whole-heartedly that I recently saw on ted.com. It is Brene Brown speaking about vulnerability and shame issues. I think you might enjoy it.
    I do pray and I do believe there is someone greater than us who designed us and loves us like an artist loves his creative work. But I don’t want to “fix” you and give you any easy answers. I think you are beautiful just the way you are. Keep on doing what you were made for!!

  1782. Gail Pean on August 11, 2014 at 10:25 pm

    Congratulations Julie and Dr.Mignot! How wonderful to spread the hope for more research and support!

  1783. Rhonda on August 12, 2014 at 12:35 am

    Hi, when I get horribly sleepy to the point my speech slurs, my eyes start to blink continuously, but not fast like fluttering. Is this a type of cataplexy? I am new to narcolepsy after thinking for years my exhaustion and sleepiness was just a side effect of Lupus. After my first does of Nuvigil, I felt like I had gained back 20 years of my life.

  1784. Stephanie on August 12, 2014 at 1:45 am

    Julie, thank you for your posts! They are very good to me! always help me face narcolepsy as something to live with and not as a curse, it was like I saw!
    One thing missing is telling friends that during an attack of cataplexy or sleep paralysis or hallucinations, stand laughing and looked you up or sending you does not help! Ideally TOUCHING VC which helps stop cataplexy, still is not instant! That waking up and getting you wherever you off, pisses me off! Sometimes you do not want to fight the sleep, or just give up and let it go away faster!

  1785. Catie McDowell on August 12, 2014 at 5:23 pm

    Thanks, Julie! Well said, as always. As a mom of a child with Narcolepsy I’m
    amazed at how often kind and intelligent friends have asked, “is your son
    better? Has he outgrown the Naercolepsy?” This is after I’ve said it’s a chronic
    illness, currently with no cure. People have a hard time just being with what is,
    without denying it or fixing it. It can be frustrating.

  1786. Lindsay on August 17, 2014 at 9:34 pm

    Hi Julie, I am looking to help a family member connect with others whom have narcolepsy in BC Canada. There is lots support and articles for the US and nothing for Canada (let alone B.C.). Any help would be great! Thank you so much 🙂

  1787. Julie Grandfield on August 19, 2014 at 10:50 pm

    Yah!!! That is so exciting. Congratulations!!

  1788. Gloria on August 20, 2014 at 6:01 am

    Hi Julie,

    I love your blog and your work on Narcolepsy and Cataplexy. I am in search for answers that I can’t seem to find. However – you answer more of my questions than most sites – and even some questions I didn’t know needed answering until I heard your answer lol 🙂

    So many things in my life seemed to fit once I learned about Narcolepsy and Cataplexy – when my mother was diagnosed with Narcolepsy w/o Cataplexy six months ago.

    As long as I can remember I have been told “if you would just get out more you would…” statements

    Also “being a klutz” was very often how I was described. Constantly drop things… fall… knock into walls or people… Then odder things began to happen the year I turned 17. The biggest trigger – which will be my first trigger I will mention. Roller Coasters.

    I so loved Roller Coasters – until that year. just after the beginning of the ride I suddenly slumped forward – in pitch black… yet I could hear and think clear. I remember at one point thinking how it felt like my lips would be torn off from the force of the ride lol.. odd thought I know…

    I didn’t know what happened… I thought I suffered whip lash and blacked out. Then wrote it off as a one time thing.

    With urging from my sister I went on another ride that night… “The octopus”… I couldn’t hold on and stop myself from sliding onto my sister… I was half slumped into her lap and everything seemed to echo and blur and I slid back and forth across the ride seat for the rest of the ride.

    Needless to say… my sister did not urge me to go on any more rides that night.

    Over the years I would try rides… and then decide to not go again because of varying degrees of issues… banged head… weak legs when getting off… just was a very difficult part of life to let go.

    I have never been a dare devil because going up high I would freeze in fear. Literally unable to move a muscle. I would not fall or become floppy… just freeze. I have since wondered if Cataplexy can do that to you – but can’t find an answer to that anywhere.

    Here is another big trigger – Being startled. I swear – the more cataplexy attacks I have the more easily startled I am. Then the more cataplexy attacks I have.. it is like a vicious cycle. It is making working at Walmart very difficult.

    What I am not understanding is this – after the bigger attacks (ie: the more muscles involved) I feel so disoriented and foggy headed. Yet everything I read says you are not affected cognitively. I get so discombobulated and sometimes feel like I am acting very giddy ( I think that is the right word)… the world looks different… like looking through a telescope (that is the closest I can describe that – yet it is not quite accurate)

    Also one full body attack I had my eyes stayed partially open and everything only went semi dark.. like when I do the awake but sleeping thing… a brown light kind of appearance… does that make sense? This goes against all I have read as well… it makes me wonder if it is all in my head.. yet it is very real and scary.. so a bit confused lol.

    Sorry to ask questions in your comments that asked for triggers… But I am very confused.. very scared… and so want answers.

    You are amazing and I am so grateful for all you do.

  1789. Valencia on August 20, 2014 at 11:35 am

    Julie,
    How can I transfer information from my IPad to my Amazon Fire Phone from your app? I have notes on my IPad , however I downloaded the app on my phone so I don’t have to carry my IPad all the time.

    Thanks,
    Valencia

  1790. Jessica on August 23, 2014 at 5:20 pm

    Hi Julie! I have family in Miami who unfortunately can’t make it, but they would still like to donate. Is there a link that I can send them?
    Thanks!

  1791. Tela on August 23, 2014 at 11:09 pm

    I ordered your book last week and received it on Wednesday. I never sat it down once I started it! I wish there was more for me to read!! I have never felt more normal and apart of something after reading your book. It was amazing how many things we have in common. I’m so happy to see that you are waking up the invisible illness. Thank you for sharing your life with us! You have inspired me to not let narcolepsy run my life. I am newly diagnosed about 8 months ago, so I’m still in that denial phase. But your site is a huge help!!! Thank You!!!

  1792. William S Johnson on August 27, 2014 at 10:31 pm

    Julie is such a refreshing breath of fresh air that she brings tears to my eyes. She is an answer to so many prayers, and so long in coming. Who can understand a PWN but another PWN? But being a PWN and wanting people to understand does not mean wish Narcolepsy or any of its tetrad of symptoms upon them. Just yesterday, I was wearing my “Narcolepsy not alone” tee shirt around the house. When I answered the door for political pollsters which usually result in my falling back inside the house from Cataplexy, I recognized the candidate’s name and affirmed I would vote for him citing from long term memory how I knew him realizing the man at the street would know but the person at the door was probably ten years too young to know… the good feeling of being able to have a rare conversation knowing my long-term memory wasn’t completely gone and the realization that if I did not shut up, I would trigger Cataplexy. As I was speaking, I observed a change in the persons demeanor, which was not rude, but a little curious, and left me feeling questionably slightly unsettled. Had I done something, said something troubling to the individual that I was unaware? Later in the evening, it struck me. It was the tee shirt I was wearing: NARCOLEPSY NOT ALONE! The shirt had made a statement that had resonated with the individual and I had not made the condition. Perhaps a teachable moment lost. What “Narcolepsy Not Alone” means to me at this juncture is that we FINALLY, Finally, finally, through this wonderful person Julie Flygare not only have a longly needed voice to articulate our cause, but she has given us a Voice, permission to be ourselves, to shout out if we so desire, that we will no longer accept demeaning jokes, inaccurate portrayals, textbook stereotypes making us all the same as if God cut us out with a cookie cutter, that with the efforts of Social Media we will no longer stand by singularly to repudiate junk scientific articles about our condition, we will not be bullied or disenfranchised in the work or disAbility arena, and we want medicine that works, in the interim for the CURE that we all await. If I could only add one word to the above collage that I do not see, it would be the word “VOICE.” Thank you Julie.

  1793. William S Johnson on August 27, 2014 at 10:37 pm

    wish=wishing, third line
    condition=connection, line 15

  1794. Momofonegreatkid on August 29, 2014 at 2:57 am

    Hi – new here. 11 year old daughter diagnosed with idiopathic hypersomonia – two polsonography tests – 95% normal sleep at night – delayed REM – slept in all 5 MSLT naps. She has an IEP for ADD “inattentive”. I don’t know how this will play out with my school District they fought us tooth & nail – 4 years and countless thousands of dollars to get her an IEP. I would like to move her to a school that accommodates children with “learning disabilities”. She also has sensory processing disorder; she is highly verbal; she can’t do math (grade 7 and can’t do grade 3 math). Common Core no less. Do I have a chance of getting her moved to an “approved NY State Private School” for children with learning disabilites? She can’t “nap” at school – she is already relentlessly teased. I worry about her future and her self esteem. We are literally broke finding out what ails her and can barely make the mortgage payments so I do not have the funds for another lawyer. I do have a great parent advocate. I’m in NY State.

    Grateful for any and all feedback from parents out there.
    With kind regards,
    MomofoneVerySpecialGirl!

    • Momofonegreatkid on August 29, 2014 at 3:02 am

      PS: She currently has “OHI” Otherwise Health Impaired; Math Learning Disabilty; Non-verbal learning disorder on the neuropsychological testing which we privately paid for prior to the IH diagnosis. She had a 504 plan for 1 year which a lawyer helped us secure & it wasn’t until we brought in the “big guns”, ie NY City clinical psychologist that we were finally able to secure an IEP. 4 years I went up against those Gatekeepers; Special Ed department; kept my cool; I have documented all of it and in their own tests they state “child keeps putting head on the desk and/or outstretched arm” . We just returned from another “top gun” university and the pediatric neurologist (who almost sent us home stating “it’s ADD Inattentive” – I said “well we travelled 5 hours to rule in/out idiopathic hypersomnia so we went forward with her 2nd sleep test – that doctor was “shocked” that she napped in all MSLT tests (again!) so she has had 2 sleep studies since June 2014. Thanks – much appreciated.

  1795. Jamie on September 1, 2014 at 12:02 pm

    Sad I missed this by hours. I live in Tampa and saw Project Sleep walk this morning on Bay news 9. I wish I had known. It would have been fantastic to meet others with narcolepsy with cataplexy. I’m glad I now know and look forward to future participation!

    • julie on September 1, 2014 at 4:08 pm

      Jamie- so sorry you missed the event this year but we will certainly look forward to seeing you at next year’s event! Also, we hope to do some more casual meet ups for folks in the Tampa Bay Area throughout the year too. Please join Project Sleep’s mailing list for updates. http://www.project-sleep.com

  1796. joyce Hannon on September 8, 2014 at 5:36 pm

    Dear Julie: Re: CATAPLEXY

    …2 Posts from this American Life – both about sleep. One is an account of sleepwalking and the other is an account of Professor Matt Frerking’s experience with CATAPLEXY. Professor Frerking is a neuroscientist (NRO) with narcolepsy-cataplexy.

    Act One: Stranger in the Night
    Act Three: I’ve Fallen in Love and I Can’t Get Up

    http://www.thisamericanlife.org/radio-archives/episode/409/held-hostage?act=3#play

    Public Radio WBEZ episode 409, act 3 – HELD HOSTAGE June 4, 2010

    Four years ago, Matt Frerking started having attacks where he simply couldn’t move his body. That’s strange in itself, but what’s even stranger is the apparent cause of the problem, which is known as cataplexy.

    Song: “Hostage-O”, Warren Zevon

  1797. adrian catalano on September 8, 2014 at 7:32 pm

    Hi Julie, Proud of what you have accomplished. interested in donating as you now are a 501c. Couldn’t find any link or mailing address for donations. would rather write a check. Good luck going forward. Adrian…..ps….we played squash back in the day in Cambridge

  1798. Melissa on September 8, 2014 at 9:19 pm

    I am a friend, supporter, wife, and biggest fan of someone with Narcolepsy with Cataplexy. I am in awe of her and her courage to face daily tasks the rest of us take for granted. I can see how hard it is for her… I can see the impact this rare condition has had on her and her life. I can’t for one minute truly understand how she must feel, and am not sure I would be able to show the strength she has. Despite her unimaginable feelings of exhaustion she fights through for us (we have two beautiful children). She fights through each and every day. The only advice I can offers any other supporters, friends, or significant others is to be there, when they need to sleep give them a quiet spot, understand they have not control of their sleepiness, it is not their fault, and most importantly…. Unconditionally support and acceptance. And for those of you who are fighting every day, like my wife … you are not alone in your fight.

    Thank you Julie for everything you do and continue to do.

  1799. Ann Sciabarrasi on September 16, 2014 at 12:57 am

    Thank you, Julie, for all you do to educate others about Narcolepsy.

  1800. Valerie Bowling on September 17, 2014 at 4:57 am

    Congratulations Julie on an outstanding presentation. I am always honored to have the patient’s voice at Conference Forum events. Thank you for your excellent contribution to our audience of disruptive thinkers in drug development.

  1801. KIM CHATMAN on September 18, 2014 at 8:51 am

    How do you apply for the 2015 Narcolepsy Scholarship ?? Sure, I’m a bit biased..but MOM to a HS Senior- ayoung man who has struggled with Asperger’s and Narcolepsy..but determined to go to college next Fall. As with most folks $$$ is a big issue..and medical bills in his past have left us w/o a college saving fund. Smart kiddo..lots of potential…if he takes his meds..keeps a decent sleep schedule-tough for a teen !!- and you can keep him AWAKE. We would like a chance to apply for the jack/julie 2015 Narcolepsy Scholarship. God Bless. Kim Chatman, Macon GA

  1802. Barbara Hopkins on September 21, 2014 at 8:57 am

    Julie I just wanted to say that Carrie has done a wonderful thing by starting our group. I am a member of the PWNs and it’s been a life saver for me. I had lost all of my friends, but now I have friends from all over the world. She deserves a medal. B

  1803. Angie on September 28, 2014 at 9:57 pm

    It can get so confusing! I haven’t tried the trick of lifting my arm to discern which is happening at the moment (hallucination or dream) but it seems that if I’m in bed, it’s a dream and if I’m somewhere else when it’s all over, it was a hallucination. Things are so real either way, that I’ve ignored emergency sirens in real life on more than one occasion; one being a fire to an adjacent town home! Thank God for sprinklers!

  1804. Lisa on September 29, 2014 at 1:40 am

    Experienced HH all weekend. Have been sick with a cold & napping more frequently. Most intense I’ve had in a while. Horrible time trying to come out of the paralysis.

  1805. gaila on October 3, 2014 at 1:52 pm

    Wow! I’m 47 years old and just recently got diagnosed with narcolepsy. Ive had it for at least 30 years, undiagnosed. Its been hell and i thought the diagnosis would be life-changing, but it wasn’t. To read about the hh other people experience is amazing!! I have them alot, and i try to explain what they’re like and no one including my sleep doctors truly understand! They look at me like i’m nuts! Then i read these posts here, and it’s like i wrote them!! I experience the same things, especially when i’m taking a nap and need to wake up to go somewhere, i keep dreaming over and over, or should i say seeing myself over and over sitting up and doing exactly what i would do if i really was getting up! I can hear every word on the tv. Im awake and yet not one finger is moving! Im trapped inside myself. Thanks for sharing! I felt sooo alone, until this moment!

  1806. Susan on October 8, 2014 at 9:56 am

    Hi Julie! I have been reading your every post since I read your book about half year ago. This has become so important to me! I have been struggling with tiredness a long long time and I have been having those sleep paralysis and hallucinations with them about 3 years now. And I feel that you are the only one who knows what I am talking about. I have not been diagnosed with narcolepsy and I don’t know if I have it? I have a treatment for those sleep paralysis and it helps to lessen them. Before, I tought that I can’t have narcolepsy beacuse I believed that narcoleptics fall asleep all the time in whatever situation. That was what my doctor kept asking about: “Do you fall asleep while talking?, do you fall asleep when eating?, standing, walking? etc. And I kept answering: “no I don’t “. So I did not get tested. That was when I fist understood that they were considering that I might have narcolepsy. Later I was lookin for information and I found your blog and your book! Tiredness is my everyday buddy and forces me to take a lot naps and it makes life more challenging. Now I have also had few times when my knees have suddenly “drop” me half or 1 ft down, when something suprising has happended. And sometimes feelings of weaknes in my knees, that I think maybe don’t show on the outside. I’m considering to go to a sleep specialist and find out if I have narcolepsy or something else what makes me so tired.
    Thank you so much Julie!!!!

    • julie on October 8, 2014 at 12:09 pm

      Hi Susan, So sorry to hear you’ve had sleep paralysis for a while now and also daytime sleepiness and what sounds like mild cataplexy. Please visit a sleep specialist who is very familiar with n+c and pursue this. Unfortunately many doctors know very little about narcolepsy so you must sometimes educate them and keep pursuing answers. The good news is that diagnosis is an opportunity to better understand and treat your symptoms. There is a brighter future ahead. Keep going! Thank you and cheering for you, Julie

  1807. Sylvia Bicki on October 8, 2014 at 4:17 pm

    She Slumbers

    Where does she wander
    within her sanctuary
    through her indigo slumber
    This serene sleeping beauty’s
    refuge from worldly cares
    Days wait too late
    bringing darkness to bear
    those lonely hours
    those long, long silent hours
    As the world sleeps
    then rises to rush past
    I stand fast, wait, sigh, weep
    My sweet nightingale slumbers

    This is a mother’s (me) sad poem of lament . My 15 year old daughter has narcolepsy. Although her dad and I do advocate for her education with her school, it is so much more than that. The social aspect can be pretty lonely. As a parent you want the best life for your child. The poem is sad, but now I can be happy there is someone (Julie!) representing those with narcolepsy and educating others about it. We did feel pretty much alone until we became aware of you, Julie, and how you have become such an important advocate for us all. Thank you

  1808. Tove Stakkestad on October 9, 2014 at 1:37 am

    I love your honesty and your passion. Your dedication to this cause shines through in everything you do! You will always excel at anything you put your (sleepy) mind to! I’m so proud and glad that you are our advocate – speaking for the masses who can’t!
    Thank you!

  1809. Kim on October 9, 2014 at 1:47 am

    Thanks for sharing this story! I always get so nervous if it’s an “extended plan/event” because all I want to know is where I’ll be sleeping and will it be possible to have that option at any time?! It makes the excitement of an event not so exciting. But usually, as long as I have someone with me who understands my needs, I can relax and enjoy. Those hammocks were like a blessing! Exactly what you needed, Awesome!

  1810. Jill on October 9, 2014 at 5:49 am

    Well said Julie.

  1811. Bill Johnson on October 9, 2014 at 6:35 am

    Julie,

    Finally, finally, you are real. Many of us no longer have intellectually connections outside of some Internet forum where we do not hear or cannot touch one another. The Internet has its fallacies because often strangers and sometimes friends mistakenly take things out of context from what a particular sender meant in a communication.

    No one that I am aware of wishes you any sort of harm, to not be successful, or even a celebrity. We have needed a spokesperson for so long, and many of us have different needs and have come to have Narcolepsy from different perspectives. There is no conspiracy to derail you or to deliberately make your life more difficult when you are doing your best to get the word out about Narcolepsy in the most positive way you can.

    The fact that you have been able to communicate Narcolepsy from such a positive manner without sharing your own struggles that many of us have already gone through or are going through, has made you appear at times as if you are Teflon coated, affected somehow differently with your form of Narcolepsy/Cataplexy than the rest of us who when the ugly stories are told have committed suicide, military and homeless who have been locked up and/or put in prison and some parts of our small population who hurt so much, that even your bright and cheerful smile does not penetrate the darkness of their own reality. It is impossible for any one person to be a Spokesperson for everyone’s illness regardless of their motivation, efforts, and support when the struggles of others particularly Active Duty Military and disabled Veterans have a history going back for more than 50-years who have lost everything and you have not. There is no one in society who has brought out profound changes to make the world a better place who has not suffered in some manner or another. The Roosevelt family comes to mind.

    Public TV recently finished a series on the Roosevelts starting from Teddy and concluding with Eleanor Roosevelt. The Roosevelt Story held a special interest for my wife and myself. Overland Estates butts up to the Fort Bragg Reservation about 12-miles from where we live. Few people except locals know of its history. My mother-in-law certainly did. She wrote letters every day during World War II to an Army Soldier who she later married. As a Southern Baptist, dancing was “frowned upon,” and my mother-in-law could not have been raised in a more strict and restrictive environment. However, when her Sunday obligatory tasks were done, she would frequently ride with a couple to the Roosevelt, Overland Estates. The couple were cooks and care takers for Overland when the Roosevelt’s were not “in their country” dwelling place. My father-in-law who was a kind man, would sometimes repeat from certain sources references to Eleanor’s looks, not in the sense of bullying but more out of how remarkable this lady was despite her looks and the contributions that she made to this country both when she was the President’s wife and even more so after his death.

    It seems that all of the Roosevelts suffered from depression. And, it was how they dealt with their individual depression that made them so great. You have tried so hard to communicate and accentuate the positive aspects of Narcolepsy, up until now, in a way that seems foreign to some of us — that somehow you managed to escape the trials and tribulations that the rest of us have experienced as if you were Superwoman, as long as you got your Xyrem and other drugs, stuck to a rigid schedule of exercise, naps, and rest, unintentionally sending a false message to some of your followers, that if we just really tried harder or that if we just did it Julie’s way, that either we have been doing something wrong with our lives, unintentionally communicating that our experiences are invalidate because we are unable to somehow vicariously catch your spirit.

    I don’t think any of us are voyeuristically wanting to know the intimate details of each other’s lives. But we do need to know of those things, especially those IADL’s the most doctors never think about as to lessons learned from each other and how we can support one another until there is a cure.

    It is a “guy thing” when a man cannot provide financially and otherwise for his family. And, Narcolepsy will not only bring you to your knees but put you flat on the floor. It has been seven years since our own Title 7 Bankruptcy been removed from the books. It has been said that only a person can allow themselves to feel humiliated. When family turns against you because of lack of knowledge or a poor understanding of what narcolepsy is about, finances are bad because of unemployment, and watching your daughter grow up into a young woman in her 30’s not being able to have the normal experiences with her like riding a rollercoaster, etc. because of cataplexy, that’s humiliating.

    There is the beautiful children’s song: “This little light of mine.” Let me assure you, your light has shined on many who have read the book and who understood at once portions of your journal. Your light now shines a little brighter, not because you are a celebrity but because your Light is no longer hidden and now out in the open for all of us the see….Matthew 5:15…

  1812. Bill Johnson on October 9, 2014 at 6:42 am

    I forgot to mention, perhaps the MOST important aspect of my comments and that being, when some healthcare and lay people see you at your best, which is how we all want to be seen, that some of these professional are making the wrong value judgments about the rest of us who are not so Cheer-io, and that we are not trying hard enough, not right with God, or our hearts have become so cold, that we can no longer see or experience beauty.

  1813. Natalie on October 9, 2014 at 7:46 am

    beautifully said Julie – well done & thank you xx

  1814. Tanya Browne on October 9, 2014 at 8:26 am

    Thankyou for your frank truths- too little of it nowadays and reading it restores my faith on another level beyond narcolepsy or any other label that has now formed above my head- that I am not alone in the world as someone who says what they mean, means what they say, and is brave enough to actually say it rather than the socially acceptable polite things people normally dribble so as to not trouble anyone! Thankyou x

  1815. Donielle on October 9, 2014 at 1:38 pm

    Julie,
    Narcolepsy has left me many times feeling isolated from the world and terrified of how to make it through the next day, much less the next month or year. I had had days where getting out of bed was a literal impossibility but choosing to miss a day of work left me laying around in pain from not being able to sleep due to my worry over bills and how my bosses would react, not to mention coworkers who had to pick up my slack. Thanks for giving us a voice!

    I think the worst part about narcolepsy is the attitude most people have toward it and the lack of true understanding. Being so isolated. If I could have this condition, and have the people I love understand me and allow my naps and selfish moments, I think it would be so much easier to take. Thanks for laying the first layer of that road!!

  1816. Ian Mitchell on October 9, 2014 at 4:05 pm

    Thank you Julie,
    Encountering your blog was a first step in connecting with the growing community of narcoleptics. We’re not better or worse than others, just a bit different. The challenges we face give us an interesting view on life. Keep on trucking!

  1817. Saraiah on October 9, 2014 at 8:26 pm

    Julie, I’m so glad you’ve shared this part of your story. So many people with narcolepsy must walk “on the edge” for awhile before we find ways to live and ways to support ourselves that actually work for our particular bodies. You have been so courageous and driven on behalf of all of us, and risked a great deal to do the work you’ve done.

    I walk what I call “the line between optimism and idiocy” with increasing courage these days, putting myself out there more and taking greater risks, and I often think of you as I do it. You, my friend, are one of my greatest role models, specifically because you are not afraid to acknowledge that you’ve got the same struggles as the rest of us. Courage isn’t the absence of fear; instead, it is the ability to determinedly proceed in the face of risk.

    You’ve got the cultivated skill and nerve, as far as I can tell, of a tightrope walker suspended on a line between two skyscrapers. May I follow in your footsteps.

    Love to you — Saraiah

  1818. Sarah Beaulieu on October 9, 2014 at 11:23 pm

    Imperfectly perfect is just what you are. I’m always so inspired by all that you do, it keeps me out in the world educating strangers, informing the misinformed and leading a much happier life because I know I’m not alone in this battle. We all have our bad days, dark hours and moments of sheer doubt. What’s great and awful about the Internet is that we don’t have to post them. That being said, thank you for posting your struggles and being real, it’s so heartwarming to read just how authentic and real you are. Can’t wait to meet you! xo

  1819. Ashley on October 10, 2014 at 2:30 am

    Thank you for sharing this Julie. It means a lot to me.

  1820. Susan on October 10, 2014 at 8:40 pm

    Thank you!
    I truly appreciate your work!

  1821. Phyllis Hasian on October 12, 2014 at 1:23 am

    Hi Julie, I love reading everything you write. I was only diagnosed with Narcolepsy with Cataplexy about 2 years ago, however I know now that I have had it since I was a child. As long as I can remember I was afraid of the dark and would never sleep alone, thank goodness for an older sister. We always had to share a bedroom till we were in high school and my father added on to our house so we could finally have our own rooms. Well that scared me to death, the thought of her not being there when I had my nightmares which I now know included hallucinations and sleep paralysis. I would still go sleep with her when I was scared and she would hold my hand. Some of my worst memories to this date were the nights I was sure someone was in my room, because I know I saw them and on occasion they would touch me, but I could never make a sound. My mother passed away a couple years ago but I was finally able to tell her that I had vivid memories of her mother tying me to the bed at night so I would not wiggle. She just could not believe I really thought that, my grandmother was really so sweet and would never really do that. She wondered why I never told her about it when I was young, but it just seemed so real to me that I was too afraid to say anything to anyone as I knew no one would believe me; but it was so real to me! No one ever believed my stories, it is so comforting to know today what was really happening to me. I am just so grateful that I always had my sister who learned even through High School that when I was afraid to just hold my hand in the middle of the night so I could be comforted and go back to sleep. I hope that parents can learn to believe how real these dreams or hallucinations are and will not just brush it off. Hopefully all the work you do with Narcolepsy awareness will help all the children who are afraid of the dark. Thank you for all you do!

    • julie on October 12, 2014 at 3:11 am

      Thank you Phyllis for this amazing thoughtful comment. Wow, I am speechless from your frightening experiences with HH and SP related to narcolepsy since you were young. I’m so glad your sister comforted you. You are so brave to have taken on narcolepsy for so long and I’m cheering for you! THank you so much for sharing your experience. This drives me to continue raising awareness! Sending peaceful nights and wakeful days your way, Julie

  1822. Kathleen Devita on October 12, 2014 at 12:26 pm

    In addition to congratulations I have sincere gratitude for your ongoing effort to educate people.
    I am returning to medication to control my Narcolepsy and reading to see if any changes occurred while I took a five year “sabbatical”. Without medication, while living alone, I slept the days away, gained more weight and added to my own depression.
    It seemed like nothing changed. Just like in the past, even with my explanation of having Narcolepsy, the request of filling my prescriptions still brings about looks of quizzical confusion. It seems now-a-days I have to hold onto my own prescription(s) and call a week later to see if the medications are in and the drugstore won’t even call me. I have to call them.
    And so as usual, although the pharmacy may think I am crazy, I repeat myself to all the pharmacy help to hopefully avoid that accusational “look”. As the saying goes I am always still feeling like “I am alone again”.
    So of course your NOT ALONE theme really got my attention. Now I hear those words running around in my head. Maybe there is still hope for the full acknowledgement of this often non visible but often disabling condition. Luckily, there is a powerful dedicated lady, named Judy raising awareness. Thank you so much Judy Flygare. You are really appreciated.

  1823. Eleanor on October 14, 2014 at 4:01 am

    Julie you are an inspiration, not because of some “celebrity status” silliness but because of all the hard work that you put in. I know how tough it can be to fit in other projects alongside everything else we have to do in life (and especially life with narcolepsy!), so much so that my projects are still struggling on months and months later haha…

    I think you do a fabulous job at what you do. Positivity is something that the narcoleptic community needs more of IMHO, and it is definitely something that you project; not by pretending that you don’t have the same moments of struggle, but by not dwelling on them and always pushing forwards.

    Plus, the reality is that to be a successful advocate, that is what you have to be. You have to be engaging and make people WANT to hear your story. As one person, you will never be able to represent EVERYTHING about EVERYONE who has narcolepsy, as we are a varied community in every respect. Anyone who expects this from you is expecting WAY too much!

    And for what it’s worth, I don’t think you have ever pretended to be anything that you aren’t, that’s why I have such great respect for you. You don’t give unwarranted advice or pretend to have all the answers, you say “this is MY story as a person with narcolepsy” and stick to the facts when talking about narcolepsy as a whole.

    Sorry if i’m starting to sound like a crazy fangirl, I just feel like anyone who thinks you have been projecting an “I’m so perfect” image hasn’t been reading very carefully.

  1824. Samantha on October 14, 2014 at 5:04 am

    I love this!!! I cannot explain how comforting it is to read this post and the comments and to no longer feel so alone. I got “diagnosed” last year with narcolepsy. The only reason I use quotation marks is because my doctor is 100% positive that I have narcolepsy. However, no one fully explained to me exactly what I needed to do for my sleep study and ended up having sleep attacks between naps so only two were recorded on the eeg. Thank goodness for an amazing neurologist and P.A. who fought my insurance for months to get the $600/month medicine covered. I hate trying to explain to my coworkers why I’m so tired all the time. I always get “you’re too young to be so tired! Just wait till your my age and then you can say you’re tired!” All while knowing full well I have narcolepsy! Not to mention having HH in response to your alarm clock. I can’t tell you how many times I have overslept because instead of waking up my alarm becomes intertwined in some strange HH. Not to mention always having to wear long pants to bed. Otherwise it never fails I have a HH thinking I’m naked with people standing around my bed staring at me. I don’t think anyone without narcolepsy will ever be able to understand the true terror of being aware to your “reality” surroundings yet having such strong hallucinations you don’t even question if they’re real until a few minutes into it. All the while being completely paralyzed and not being able to scream for help, much less even signal for help. I always feel like I can’t breathe when I’m having sleep paralysis too. I’ve scared the you know what out of anyone around me once I can finally move because I shoot up out of bed, taking in a huge gasp of air.

    Has anyone else on here noticed if they don’t take their medicine they have far more HH and night terrors?
    Also, does anyone experience their eyes flickering back and forth when they are fighting a sleep attack? It happens to me a lot while driving and I will go miles and not have a single memory of driving them once I can pull myself out of the attack with a Ritalin or a large energy drink.
    Can’t tell you any more how much it means to me to know there are people who actually understand what I go through every single day.

  1825. Mia on October 14, 2014 at 3:12 pm

    Just found your blog and from what I’ve read so far, I love it. I was diagnosed with narcolepsy with cataplexy my junior year of high school during the winter of 2005-2006. My hallucinations usually happen during my late afternoon/early evening naps, and it sounds like mine are similar to yours except it’s my roommates and not a boyfriend. I’ve gotten used to the hallucinations since I’ve had those since I started having symptoms in 2003… it’s the sleep paralysis (with hallucinations) that is new to me. The first time it happened to me a little over a year ago, I had the terrifying feeling that something was in the room with me and felt like my heart was beating out of my chest. I couldn’t move my body but was able to move my eyes towards the bottom of the bed which is when I saw this demon-like creature climbing up on the bed towards me. Somehow I shook myself out of it, did some Googling, and was shocked that the sleep demon/succubus/incubus/whatever was a super common thing. It freaked me out, but a few articles said that sleeping on your back is when it is more likely to happen (so I do a whole lot of sleeping on my side now). I’ve had the sleep paralysis visions two other times. Once was when a huge creature came through my bedroom door, approached me, leaned down to whisper something, and then I shook myself from it. The most recent one was quick, but I shifted my eyes to the left and saw the demon from my first hallucination just chilling on the pillow next to me. Fortunately, my second two were a lot less scary because in my head I knew it wasn’t real, so I close my eyes and just wait until I can move. The biggest difference between my hallucinations and the sleep paralysis hallucinations for me is that during the ladder, I know I am awake and am actually looking around my room (albeit, with my brain still thinking I’m seeing some sort of dream at the same time, I’m not sure) and the second I shake myself from it, I am aware that what I just saw wasn’t real. My hallucinations are more like VERY vivid dreams that once I wake up naturally (not sure if it’s minutes or seconds after the hallucination) I remember and have to figure out whether they were real or not. Sorry for the novel, but thought I’d share!

  1826. Alaina on October 16, 2014 at 4:39 pm

    Julie,
    The information you’ve provided it very helpful and informative. My son is 12 and has Narcolepsy. He is really struggling in his Reading Class in middle school. He has sleep attacks during the lesson and after school he is too tired to read the material/novels. Do you have any suggestions? This is the hardest subject for people with Narcolepsy. I also have the disability. Is there any new technology or devices that could help him. My doctor suggested trying Audio Books.

    Alaina

  1827. 10 Things You Didn’t Know About Narcolepsy on October 17, 2014 at 6:57 pm

    […] as hyperactivity, irritability, moodiness, attention deficits, fogginess, or memory problems. These behavioral and cognitive changes are very real, but not what we think of “sleepiness” – i.e. droopy eyelids, […]

  1828. 10 Things You Didn’t Know About Narcolepsy on October 17, 2014 at 6:57 pm

    […] In closing, people with narcolepsy are EVERYWHERE and we are NOT ALONE. View the real superstars of narcolepsy here.  […]

  1829. Egr on October 20, 2014 at 2:25 pm

    You’re amazing Julie! I go to Florida State University and have a 3.97 GPA and have always worked my butt off to be successful. Then I got narcolepsy and I even had to take a medical withdrawal this semester. I will be reading your blogs, book, and watching your videos to help me find my strength as I too fight this obstacle I never thought I would have to take on. You are so inspirational!!!

  1830. Lennis Sadler on October 22, 2014 at 3:24 am

    Hi Julie,

    My daughter (11 years old) was diagnosed with Narcolepsy two years ago. We did not realized that she had cataplexy until we saw Dr. Mignot and he told us that hers was present in a loss of muscle control in her mouth. When she gets too excited, angry or sad, her mouth droops and her tongue seems heavy to her. She starts talking as if her tongue was asleep, making it difficult to understand her. She is now taking Xyrem and her cataplexy, although still present, does not happen as often as it did before the medication. I had always heard that cataplexy caused people to fall or lose control of limbs, so I was surprised to hear that it could manifest itself in different ways.
    Thank you so much for everything you are doing to help all of us out here who either suffer or have a love one suffering from Narcolepsy. You are an awesome asset to all of us! Keep up the great work!

    • Phillip Satkowski on October 23, 2014 at 4:17 am

      Hello Julie and Lennis,
      I have been following your blog for a while and after reading your book I bought the kindle edition for my two sisters and for my mother so that they could understand what I experience. I am 32 years old and also epileptic as well as narcoleptic with cataplexy. For a very long time I had the symptoms confused, especially cataplexy and sleep paralysis and what occurs before I have a tonic-clonic seizure, which is often referred to as an aura. My neurologist finally asked me one day to describe any other symptoms of my epilepsy and I had finally built up enough guts to describe to him what happens when I am paralyzed in bed or when I slump over in my chair and fall on my floor while listening to music or watching a movie. He gave me a multi sleep latency test and my results were the same as what you described in your book; all five naps I went straight into REM within 30 seconds or so, and right up until they woke me up.
      The way that cataplexy effects me is slightly different then what most people describe I think however. The effect is the same, I lose all ability to hold my head and shoulders up, I notice that, and then generally the next thing I notice is that I have fallen to the floor. It generally happens to me at night, only a few times has it happened during the day when I am around other people, and it always happens when I get very excited, particularly when listening to my favorite band or when watching a video of them. The few times that it did occur while I didn’t have the time to get into a chair or something however, I did fall and split either my head, or my tongue, and only once did it lead straight into a seizure; or relatively quickly into a seizure. I also take xyrem, and have noticed a big decrease in cataplexy as well as sleep paralysis, which I have to say I suffered from more than anything, I would even take seizures over sleep paralysis. The medication has helped a lot, however anti-epilepsy medication makes me groggy and it is difficult to keep up a good sleep pattern, while at the same time I can’t take very many stimulants because of the seizure risk. That is all, I thought that I should finally post and let you and Sarah Elizabeth and anybody else who helps make narcolepsy more publicly known, know how much I appreciate it. I could only fail at trying to explain to my immediate family the seriousness of narcolepsy, especially when they had other things like epilepsy as well as other serious health issues of mine to focus on. I would never have got everyone to understand that narcolepsy is a serious health concern if it wasn’t for your memoir.
      Phillip Satkowski

  1831. Bart McNeely on October 22, 2014 at 2:11 pm

    I started the knee buckling in 2005. I was diagnosed in 2007. I began discussing the possibility of going on disability last year with my doctor. I started collecting affidavits from folks who’ve seen me fall to the ground. I started documenting the dates and severity. Since it is so hard to describe in words, and since it is intermittent, I set my iPhone on record in the shopping cart at Kroger while I pushed it around in the event something did happen. I’ve had a real increase in severity but it’s not enough to stop me from going places and doing things. As a person with a high musical aptitude (particularly with rhythm) whenever I keep the beat I don’t fall. In fact I sing background vocals first Fridays of the month at our church’s Messianic Jewish service. So… There I am on the platform jumping up and down in front of over 2,000 people during our very lively worship set. But at nine o’clock in the foyer with the throngs of people I’m walking to my car with a cane and hitting or nearly hitting the ground every five steps… Until I start marching, dancing….. In short I can be a real SPECTACLE if observed as I fall, march, kick my cane with my right foot, walk stumble, run, skip, walk ‘normally’ and fall, walk, fall, walk…..run. My families life these past ten months would have made a fascinating reality show.

  1832. Travis Farris on October 23, 2014 at 3:51 pm

    I ve had narcolepsy senice i was 10 and now i am 36 I know how to control my emotions we’re don’t have cataplexy

  1833. Michael Hennessey on October 24, 2014 at 5:41 am

    I would guess if Sarah Elizabeth showed this video to some people they would think it was an act.

    I am 65 and can trace Narcolepsy back to grade school. I was not diagnosed until my 40’s after a major auto accident. I have had all of the symptoms over the years. But not all of the symptoms at once.

    I have had people leave my home because I fell asleep in conversation which made them mad. People thought they saw me drunk on the street when I was trying to walk home. My parents always joked about my ability to sleep anytime, anywhere except at night.

    Great saying are, “all you have to do is focus” , ” you have so much waisted potential” , ” everyone misses sections of the road occasionally ” ” He is just accident pron” and my favorite ” if you only had more faith GOD would heal you”

    I love Sarah and Judy for going public with something so emotionally embarrassing.
    Michael
    PS: A lot of fun things along the way. I ran into the only tree in the yard while mowing the Lawn(sleep Attack). Walked off a friend’s roof while roofing and talking.

  1834. Autumn on October 24, 2014 at 4:13 pm

    Julie,

    I am so happy to See all of my symptoms on one list together. I have been confused since my diagnosis as to what is from the N and what might be something else. It’s heartbreaking be mourning the loss of your former self, only to then lose those you love as a result of these signs. I am starting to have hope again, and I no longer feel alone Thanks to the support and love I have found on the support group forums and your diligence to perservere above the labels we live with.

    Autumn
    Savannah, GA

  1835. Cheryl Purvis on October 24, 2014 at 9:38 pm

    Dearest Julie…you are amazing and this was an awesome blessing that came out of something bad. Thinking of you and all your extraordinary opportunities.
    Sincerely,
    Cheryl

  1836. Natalie on October 25, 2014 at 5:42 pm

    Such a great story. Thanks Julie!

  1837. jill on October 25, 2014 at 6:06 pm

    Hi Julie,
    I too have narcolepsy and was officially diagnosed when I was 24, nearly 20 years ago. I really struggle with exercise. I love to get out and do things, but after doing an activity, often within in minutes of sitting down afterwards, my body wants to crash (especially so if the weather is warm and I’ve been sweating a lot). So, unless I’m doing something in my own house/yard/neighborhood, I have to make sure I will be able to safely crash out for 20-40 minutes afterwards. Going to a yoga or exercise class that is more than 5 driving minutes away from my house is not doable unless someone else is driving.

    I just discovered your website and it really is wonderful. I do my best to explain to close friends and family about narcolepsy and how it affects me, but they don’t necessarily take away what I hope them to and I think that is because of the ways narcolepsy is depicted on TV, in movies and other media. Some friends say they are hesitant to call me because they are afraid they are going to wake me up when I’m napping or they try to keep me awake when I doze during a movie (like I have a concussion or something), but I really just need to nap for 5-15 minutes. Another scenario I run into occasionally is when someone surprises me, not realizing it’s really uncool to surprise or startle someone with cataplexy (although my cataplexy is normally relatively mild).

    Thank you so much for this resource and all of your work towards narcolepsy awareness. I don’t personally know anyone else with narcolepsy and it is hard not having someone else to talk to that shares the day-to-day challenges of the disorder.

    Thanks again,
    Jill

  1838. jill on October 25, 2014 at 6:36 pm

    Julie,
    This is really great. I’m really proud of you. This is so important for all of us in the narcolepsy community.

    On another note, a couple of nights ago I saw a commercial that mentioned narcolepsy and for the life of me I can’t figure out who put it out. I’m pretty sure it was for a plumbing or HVAC service company. The scene was two techs in a basement. One was a new hire, which the narrator described as neglecting to mention they had narcolepsy on their resume/job application. Has anyone else seen the commercial? I remember my mouth dropping open in shock when the comment was made (it was not said in a good light). Another opportunity……
    Jill

  1839. Donna McVey on October 25, 2014 at 10:12 pm

    Sooooooo proud and inspired by you Julie. This is huge!! can’t wait to see the finished item.
    Take care and sleep well x

  1840. Renee Daugherty on October 26, 2014 at 9:19 am

    My daughter actually got mad when I got offended from the movie Deuce Bigalow, when he took the Narcoleptic girl to the bowling ally. It’s not like that at all. I am the first to admit, I find humor in what I experience with Narcolepsy. I don’t laugh, nor can I, at others. Everyone that has Narcolepsy, has the same symptoms, but not always the same reality. Thank u Julie, for being our voice!

  1841. Sue Schultz on October 29, 2014 at 7:03 pm

    Thanks for sharing Julie! It’s good to know that Honda is taking ownership of their mistake, and doing something to rectify it.

  1842. greg on November 3, 2014 at 12:43 am

    I have narcolepsy and cataplexy, mine showed up after a severe motorcycle wreck, crushed spine in 3 places.I have had to deal with it for 34yrs now, I don’t take drugs as they either didn’t work or the side effects to me weren’t worth what they did for me. I have found that paying attention to diet helps a lot. Controlling emotions is a large help but hard to do at times. If I were to want to stress a point it would be don’t let the Dr have full say of your treatment reserve the right to set the quality of life for yourself, and don’t be afraid to fire a Dr that won’t listen to you

  1843. Anna on November 5, 2014 at 5:10 pm

    Sharon and everyone, so many thanks for your stories. (Some tears thanks to Sharon’s lovely encouraging words)

    I’m 8 weeks pregnant with my first baby and am thrilled with joy and happiness but also with fear. Have been narcoleptic since teenage years, diagnosed 9 years ago, had heavy cataplexy but not for years anymore. I’ve always tried to do without medicine, having chosen artistic career = not much money but able to nap and rest daily. I take epehdrine when needed and drink loads of coffee and sleep much. Refused to start Xyrem this sunmer as I read the manufacturers warnings and they scared me totally, it seemed like a heavy drug to me, they also stated clearly Xyrem should not be used during pregnancy, breastfeeding or while trying to conceive. (This in Scandinavia, I dont know if the information laws are different in different countries. However, that statement was clear in the next in my native Scandinavian language)

    I dropped ephedrine AND coffee the day I found out I’m pregnant, I’m very very tired and confused already now. I get pretty much nothing done except taking care of our dog and eating, am hungry all the time. Then again, I’m a painter, so I could not really paint now anyway that being dangerous to the fetus aswell.

    What worries me maybe most is the idea of going to cataplexy while delivering. Do you have any info or experience on that?

    • Geraldine on October 13, 2015 at 3:36 pm

      Hi there, my name is Geraldine and I have Narcolepsy with Cataplexy.
      I am in my 37 pregnancy week now, and I would like to know if you could get some information about delivering naturally with cataplexy. I will appreciate very much your response.

  1844. Karla Bruck on November 9, 2014 at 8:40 pm

    I am soooo glad I found this site! I am currently 6 mos and a week with my sixth child. I did not have the Narcolepsy dx with the others, but I did have the bi polar dx. I am taking care of my kids and trying to go to school and I am at my wits end. I feel so alone. I am an only child and my parents are deceased. My ob doesn’t know anything about Provigil, but I did take it while I was in my first trimester. I get so tired of my family making comments about me “sleeping all the time”, they just don’t get it. I will not be having anymore children but I still have a ways to go. I am struggling in school and I just lay around like a potato all the time. It is so hard! Glad to know there is a “light at the end of the tunnel”. thank you for all the wonderful comments and posts.

  1845. M. Briganti on November 11, 2014 at 9:21 pm

    Interesting Julie. You’re a “cataplexy first” narcoleptic. I agree — all of the current medications used to treat the condition are unsatisfactory. I think the disorder is simply too complex for any single medication. Replacing orexin won’t work because the receptors that respond to it gradually diminish over time when it’s absent. There are “feedback” circuits and autoreceptors that self-regulate it as well. A pill won’t be able to do this. The only thing I think researchers can do is map out the entire orexinergic system and how it interacts with other neurotransmitters, but it interacts with so many a single drug can’t target them all and the inhibitory feedback. I honestly don’t know what can be done, as amphetamine stimulants cause too many cardiovascular problems over the long term, and Xyrem, well, it just isn’t the wonder drug it’s been made out to be. I am in Canada and I know that the new histamine boosting pitolisant is based on the principle of another drug that is available up here. Unfortunately, it’s very weak. Other than that, I haven’t seen much in the way of new research.

  1846. Moira McDowell on November 13, 2014 at 3:58 pm

    these quotes changed my life

    • julie on January 3, 2015 at 6:34 pm

      I’m so glad, Moira!

  1847. greg on November 18, 2014 at 12:47 am

    is this a site just for women?

  1848. Dakotah's Mom on November 24, 2014 at 11:15 pm

    Julie, Thank you for making narcolepsy easier to understand. I have so much more compassion and patience for my son as he struggles with this disease. I just wish that there was a way to make him realize that this is real….how do you help someone to see through their denial?

  1849. Sarah Edgeworth on December 1, 2014 at 9:14 pm

    Here are some of my memorable quotes from doctors. Sorry if any of them have been said already, but I cannot see the comments to this post.

    “I am so excited! You are my first patient diagnosed with narcolepsy!”

    “Here, I Googled some information on narcolepsy for you.”

    “I have never seen anyone have a cataplexy attack before; can you try to have one so I can see what it’s like?”

    “If I make you laugh, can I get you to fall?” (While telling corny jokes throughout the whole appointment).

    “You don’t look sick.”

    “I’m sure you are fine.”

    “Narcolepsy, what’s that?”

    “I get that you are tired, but everyone in life has obstacles, you just have to do it.”

    After trying numerous medications and not having any success…
    “So, what do you want to do now?”
    -I want you to tell me some of your ideas and be knowledgeable about treatments available (beyond pills).

    Please do not spend the whole appointment having me educate you about narcolepsy and cataplexy. Take the time to educate yourself. It is very frustrating having to waste time and pay doctors who know nothing about your condition.

  1850. […] awareness is on FIRE this fall! This is thanks to the narcolepsy PSA series airing on national TV, The Daily Edition segment in Australia and Sarah Wheaton’s video of […]

  1851. […] is on FIRE this fall! This is thanks to the narcolepsy PSA series airing on national TV, The Daily Edition segment in Australia and Sarah Wheaton’s video of cataplexy (a symptom of narcolepsy) going viral on […]

  1852. Anna on December 3, 2014 at 2:14 am

    Thank you for all of your work in advocating for us. I remember showering and listening to the Honda ad on my shower radio and thinking, “Great! Just what we need — more insulting and inaccurate stereotypes about narcolepsy.” But as always, I immediately questioned myself on whether I’m being “too sensitive” about the topic. Would a car manufacturer poke fun at other chronic illnesses? Narcolepsy might be one of the last conditions that society considers to be an acceptable one to joke about. I can’t wait until people realize that just like anything else, unless you yourself have narcolepsy, it’s not funny when you crack jokes about it.

  1853. Taylor on December 8, 2014 at 7:18 pm

    Will there be another scholarship for 2015?

  1854. Leslie on December 24, 2014 at 4:53 am

    THANK YOU for sharing this. Yes, incredibly powerful. Can’t wait to see the interview!

    • julie on January 3, 2015 at 6:33 pm

      I’m so glad it was powerful to you too, Leslie!

  1855. Emz on December 24, 2014 at 2:35 pm

    Thank you for sharing the language of spoons!! I can’t believe I’ve never heard of it, but it will be very beneficial for helping others to get an idea of what we go through every day!
    And thank you for selflessly using MANY of your spoons on our cause!!!!

  1856. Laura on December 30, 2014 at 8:07 am

    Yay, Julie! Congratulations on a great start!!

    • julie on January 3, 2015 at 6:32 pm

      Thank you, Laura. I’m excited to get started!

  1857. Angela on December 31, 2014 at 4:18 pm

    I literally just fell upon this forum today and I think I’ve had Cataplexy for almost 10 years now (I’m 29 years old) and am just getting into the steps of being diagnosed.
    Definitely enjoyed reading this post and all of its comments as it made me laugh I guess because I can relate to a lot of your experiences.
    My triggers are:
    • excited-anticipations
    • some self-humour
    • random episodes of laughter (depending on the subject)
    • being chased (playfully)
    • some feelings of adrenaline
    • the sight of a nasty bug inside a home (like an earwig)
    • being really upset to the point of crying is the worst for me
    • depressing thoughts leading to a sudden overwhelming sadness

    I too experience the slacked jaw, crossed eyes that sometimes “flutter”, head drop and I guess the knee-buckling when I’m about to collapse.
    I can sometimes regain strength in my legs enough to adjust my “fall” so it isn’t as painful… It’s really hard though cause the upper-half of my body will be hanging practically dead-weight. Whoever is around that knows me, I try to get them to grab my arm cause the contact sometimes feels like it distracts me enough to snap out of it and gain back my muscle tone — not sure if this would work for everyone as we all have different triggers, etc.

    I’m not entirely sure yet if I have Narcolepsy as well but I know that I experience Excessive Daytime Sleepiness (EDS) on the daily and the struggle is real. If there are periods of time during a workday where it’s not so busy and I am lacking the brain stimulation I can get really drowsy really fast and have that strong urge to fall asleep as I have a desk job. Having a latté is usually a resort when this happens because it keeps me alert for at least 2-3 hours without getting the urge again. I’m not a coffee-drinker so drinking caffeine is not part of my daily routine like some.
    When I feel really tired or even stressed along with sleepiness I sometimes experience sleep paralysis. It’s the most annoying thing when you just want to fall asleep normally… Sometimes I’ll get a slow “wavy” sensation in my brain to the point where I can almost hear these “surges” and this is all while being paralyzed from it. During these moments I will sometimes hallucinate half-asleep. It’s like I’ve fallen asleep with my eyes opened and can actually hear my boyfriend arrive home and walk down our hallway to the doorway of our bedroom to then realize (once I’m awake again) that he’s not even home yet; and that same thing has happened to me about 3 or 4 times now.
    The EDS is so bad sometimes that I can almost never stay awake during a movie; it’s like not enough stimulation for my brain or something.

    Narcolepsy/Cataplexy doesn’t seem to run in my family at all though, sometimes I feel like my over-intake of “pot cookies” one night at a party back when I was 19 years old somehow triggered it by changing the dynamics or chemistry of my brain because that night I had an episode of extreme laughter where I was unable to control it and started to ball my eyes out uncontrollably as well but was still laughing hysterically at the same time… And I swear this must have lasted almost 10 minutes – it was a really traumatic experience for me. Shortly after this, although I don’t quite remember how soon after was when I began to have the Cataplexy symptoms. It could just be coincidence but I was a very light Cannabis-user at the time and had too many edibles that one night cause I wasn’t aware of how potent they really were.

    Anyways, I feel less alone reading about others living the same struggle. One of my hopes is not having to live on medications once I’ve been diagnosed.

    Thanks for reading. (:

  1858. Shannon on January 1, 2015 at 7:59 am

    I’ve had many trials and tribulations with my narcolepsy and have encountered many people like this. However, I do want to defend pharmacists as my journey to a proper diagnosis was very long and even more painful, but my pharmacist was nothing but supportive throughout the whole painful ordeal. Once my doctors realized I had narcolepsy and was not, in fact, “crazy”, she is the one that helped me successfully wean off a plethora of psych meds I did not need to be on (and subsequently did make me a little “crazy”). Her kindness during such a dark time is something I will never forget. I realize she may be one in a billion, but I hope not. Maybe with more information out there, thanks mostly to Julie, we will run into more empathetic people. That being said, Julie, you have made this journey that I thought I would never recover from, seem hopeful. I thank you so SO much for your book, your blog, speaking out, everything you have done!

  1859. Kelly Bell on January 1, 2015 at 2:25 pm

    Good for you Julie! How does the fundraising part work?

    • julie on January 3, 2015 at 6:32 pm

      Thank you, Kelly! I haven’t started fundraising yet, but I’ll be sure to announce it! So excited. 🙂

  1860. Mikail Tim on January 6, 2015 at 12:33 am

    This is wonderful and the very first scholarship i have seen specifically for narcolepsy. I will most definitely apply amd thanks in advance for the opportunity.

  1861. Alyssa on January 6, 2015 at 7:50 pm

    Congratulations Julie! I was browsing websites reading more on narcolepsy and couldn’t find one more interesting than yours! Not only am I someone who lives dealing with narcolepsy, you could also so I am a runner because the past 4 years of high school I found cross country the only answer to help me get out of the dark sleeping bubble I was stuck in. I am very excited to follow you on your way to the Marathon in May! Good Luck!!

  1862. Emily on January 6, 2015 at 9:05 pm

    I’m glad someone’s finally doing this. It’s such a struggle to try to work, and go to school with narcolepsy.

  1863. Stephanie on January 15, 2015 at 7:16 pm

    It is encouraging to read this right now although I admit I have to fight to make myself believe it at the moment. It’s just been a rough exhausting week and I am left feeling like I have let my children/family down. I am clinging to any piece of hope I can find right now. I have felt very much alone on this journey so far. I thank you for sharing your story and giving those of us who feel invisible a voice! I hope I can Be awake enough to do the same one of these days.

  1864. Ashley on January 20, 2015 at 5:16 am

    The Spoon Theory is the best example of how I feel living with Narcolepsy and how I go about planning my life. I recently had a baby and I’ve been trying to figure out the best way to explain things to her. I think this is perfect for when she is old enough to understand. 🙂

  1865. Andri Neophytou on January 21, 2015 at 4:03 pm

    My story is really…long! I am 41 years old and I have narcolepsy from the age of 13. I have a girl 10 years old, no work for 2 years, and 2 months ago the only man that I trusted ,loved ….walked out of my life for …..living!!!!(married 20 years! ) I live in CYPRUS ….alone…..For 24 years!!! I am afraid of living…can’t trust people 🙂

  1866. Alisha on January 21, 2015 at 4:29 pm

    Thank you!

  1867. Emily on January 21, 2015 at 5:38 pm

    I am currently 21 weeks pregnant, and am prescribed Nuvigil for my Narcolepsy/Hypersomnia. I was about 2 months into my pregnancy before I found out that I was pregnant. I was taking my Nuvigil throughout those 2 months. I am nervous that it will affect my baby. There is hardly any research done on Nuvigil and pregnancy, and I’m scared that it will have a negative affect. I had my 20 week ultrasound yesterday, and they said she is developing fine, and everything looks good, but I still have some anxiety about it. Has anyone taken Nuvigil throughout their pregnancy? Any stories or experiences would definitely help calm my mind!

    • Nancy on February 2, 2015 at 3:28 am

      Hi Emily. I was just looking through some of Julie’s old posts and saw your recent comment. I took Provigil (I’m old-school, LOL!) during my pregnancy. I’d rather not get into details here, but please feel free to email me at nancylackerman@gmail.com if you would like to know how it went for me.

      • Morgan on November 8, 2016 at 10:56 pm

        Nancy I emailed you!

  1868. Heather on January 23, 2015 at 8:46 am

    So happy you got to see Wicked in Hollywood.
    We love that show so much. It would be terrible to think you missed out.
    We saw it in London a couple of years ago and it, among other things, inspired my daughter Riana (Xavier’s sister) to apply for Musical Theatre schools in the U.K. She has auditions in March and fingers crossed she’ll get in (although it’s tough, only about 300 places all up for about 3,000 applicants).
    If ever you can, go and see ‘Matilda’ also – it’s lovely (but Wicked is still no. 1)!
    Best, Heather

  1869. Marcel on January 23, 2015 at 9:57 am

    Dear Julie,

    For many years, I resolutely banished any thoughts of sharing my personal views about Narcolepsy. For better or worse . . . I’m still undecided – mixed results . . .
    BUT, your recount of missing something you so desperately wanted to see has nearly brought me to tears. I have missed so very many amazing experiences at the behest of this f****n disorder. Reminiscing like this, I want to scream and shout like a madman at the frustration produced by this. I spent half of a round-the-world trip trying to remember what i missed. I feel ya, and sympathise. Thank you for you’re story.

  1870. Susan on January 23, 2015 at 6:36 pm

    Delighted you had the chance to finally see the musical. I have an adult daughter with Narcolepsy and cataplexy. She loves the theatre, but is often afraid to attend because strobe lights will often bring on attacks for her. Can you tell me if this is a musical that she might have a chance to get through? I know there are no guarantees, but she and I like to know that she has a chance of seeing the whole production before we buy tickets. She’s given up concerts, but I spurge on theatre with her whenever I can. Your website has helped me immensely understand what she deals with on a daily basis. Thank you.

  1871. Alex Withrow on January 23, 2015 at 8:43 pm

    Great post, Julie! So happy you liked the show again – I thought it was wicked cool! 🙂

  1872. Melissa on January 23, 2015 at 9:23 pm

    So happy you had another chance to experience Wicked! And I must say that I am very impressed by your color coordinated outfit. For the record, I’ll always be around to watch over you–whether you’re sleeping or not! Still wish you’d given me that headband for keeps though. 😉

  1873. Susan on January 23, 2015 at 9:30 pm

    Thanks to all who signed the petition and to you, Julie, who advocate so proficiently for this disability!

  1874. Susan on January 23, 2015 at 9:36 pm

    It’s enough to know that those with narcolepsy are “not alone.” Thank you.

  1875. Arnold on January 24, 2015 at 6:52 am

    Julie……..you did it!
    You beat it hands down staying up?
    I was very moved by your story, relating it to so many experiences of my own.
    That you went back into the ring of fire and came out standing tall____julie — that is the most we could do for ourselves—-fantastic you are — just fantastic.

  1876. Gail Pean on January 24, 2015 at 2:28 pm

    You overcame the anxiety and enjoyed your favorite show! So happy for you and that Alex appreciated the humor. Another great post!

  1877. Dorothylou Sands on January 24, 2015 at 9:01 pm

    I love musicals too. Some I have seen so many times that I know what is coming next. I can’t tell you how many times I have seen My Fair Lady, on screen and live. I usually don’t dose off more than a couple minutes during plays and movies and occasionally I make it through a movie without falling asleep at all.

  1878. Tess on January 24, 2015 at 10:10 pm

    Slept through the guest speaker’s speech at my postgraduate graduation. What a loss.

  1879. Kasha Oelke on January 25, 2015 at 5:51 am

    Aww, your post made me tear up! I’m so happy you got a second chance to see Wicked and conquer a goal that sleep originally took from you. What a great feeling that must have been! 🙂

  1880. Sandy on January 25, 2015 at 8:07 pm

    Thank you for the explanation. My son’s doctor tries to explain what is going on, but I have never quite understood what he is talking about. You put it in clear terms that totally make sense now. Thank you. Love your book Wide Awake and Dreaming. I have recommended to several people.

  1881. Susan on January 27, 2015 at 5:15 pm

    Way to go!

  1882. Denise on January 27, 2015 at 5:57 pm

    Ive been on Provigil/Nuvigil for 5 or 6 years. When I could finally afford to see my dentist, he was shocked at all the tooth decay in my mouth. So much so, that I’m looking at most likely dentures.
    I went online and found story after story about people who spent $1000.00’sof dollars on dental repair from this drug. Something they don’t warn you about.

  1883. Pam Schul on January 27, 2015 at 8:32 pm

    Thank you for this article and to everyone who has commented. I am currently 26-weeks pregnant and I have a 26-month-old running around. I have narcolepsy w/o cataplexy. I also know the exhaustion, and the pain, as well as the guilt and the loneliness that you all talk about. Prayer helps me some. But it is so nice to know that I am not the only one experiencing all of this.

  1884. Mark D. Miller on January 29, 2015 at 3:07 am

    I have narcolepsy/cataplexy and every symptom of narcolepsy.Because of thousands of dollars of copays,I haven’t seen a doctor in 5 yrs.I haven’t been on xyrem for 5 yrs.I have many disturbing cataplexy episodes.I have thought of suicide when I’m having episodes.Is there any kind of assistance for disabled medical copays.

  1885. Jackie on January 29, 2015 at 2:52 pm

    I am awaiting a test to see if I have narcolepsy and have been reading a lot of things online – this story really struck a chord with me. I’ve fallen asleep at THREE concerts (Smashing Pumpkins, Steely Dan and Punch Bros.). All these years I knew it was kinda weird (I mean – who falls asleep at a Smashing Pumpkins concert in a giant arena??), but just assumed I was probably just really tired. Reading all these things is making things I thought were just me being quirky suddenly make sense. I’m anxiously awaiting my sleep test… thanks for sharing the story.

  1886. Nicole Eugene on January 30, 2015 at 1:11 am

    Congrats! This was a great article.

  1887. Tanda Engelsma on February 1, 2015 at 7:46 am

    Good Morning,
    Thank you for the dental information. I currently depend on Xyrem and Adderall for my N&C. I often take “drug holidays” to cleanse my system from amphetamines and the past two times I took a break from my stimulant I noticed a huge difference in my oral health. For two or more years I have been going to the doctor for mouth sores and they send me home with something they call miracle mouthwash that does not help much. I was told the sores were from my connective tissue disorder or possible Lupus. However, i am noticing that my sores greatly decrease when I avoid adderall. The doctors say the medicine is not causing the sores but I think they are wrong. I can’t imagine life if I had to stop that medication!!! Do you know if there is a connection between oral sores and adderall usage? Thanks for reading and any info would be greatly appreciated.
    V/r
    Tanda

  1888. Beth Kosiewicz on February 1, 2015 at 8:01 pm

    Daisha you are AWSOME AND NOT ALONE!!! My daughter first developed her Narcolepsy symptoms at the end of second grade and was diagnosed by the end of third grade. She too was a student athlete who played softball (her first love),
    volleyball, basketball, and some swimming at one point. She also loves reading, dogs, horses, and dolphins! The only difference was that she didn’t want to talk about her Narcolepsy and how it impacted her life. She is now 18 and has had many challenges over the years because of her N. Just stay STRONG and be PROUD of your accomplishments!! If you or your mom ever want to connect online, I am part of Midwest narcolepsy Support group or you can just look under my name on Facebook. CONGRATULATIONS AGAIN!!!!
    Best of Luck at the

    • Jessica Gainer on August 13, 2015 at 8:43 pm

      Hi Beth! This is Daishia’s mom. Everything you mentioned about your daughter my daughter loves. It’s hard to believe how similar they really are. I will look you up on facebook and would like more information on the online support group. Thank you for your kind words!

  1889. Dallas Klassen on February 3, 2015 at 10:06 pm

    I once read an article that stated, “A person without narcolepsy would have to go a single week without sleep in order to experience symptoms that a narcoleptic encounters on a daily bases”. I consider this to be the most accurate way to describe the neurological sleep disorder to those living without it. Why do I have the right to make this opinion? Simply because I have narcolepsy, and there was a time I did not. For the first fifteen years of my life my sleep cycle was normal. I could go to bed whatever time I pleased with the punishment of being tired upon 7:00am, just like anybody else would. Eventually that fatigue would vanish as the day moved forward and I could function as well as anyone. Staying awake for 16 hours of the day was an effortless task. I never thought these were things I would one day look back at taking for granted. It wasn’t until the middle of high school that I began taking unusual naps after coming home from school. These naps started to become a regular occurrence, sometimes twice a day. At night I started having the most vivid dreams that seem to last longer than usual along with waking up countless times a night. One evening I woke up with the inability to move or speak for several seconds, my eyes were open and being aware of my surrounds was the worst of things. I soon learned that this phenomenon was called ‘sleep paralysis’. Eventually these symptoms all escalated to the point of concern and left me powerless of overlooking them. After years of speculation and multiple tests done by numerous doctors, it wasn’t until a local naturopath suggested a sleep test to be done and the possibilities of narcolepsy. This of course led to me research this particular sleep disorder and before my official diagnosis I was certain this is what I was struggling with. Four years after my initial symptoms I was a legitimate narcoleptic and given the notion that it would never be cured. No medications seemed to work, only causing more problems and complications. Perhaps the most frustrating part about having narcolepsy is having others mistake it for ‘laziness’ or tell me, “just stop being a pussy, everyone gets tired. Deal with it!” Sleepiness is like a starvation for me, telling me to just refuse my daytime sleep is like telling a patient that’s about to go for surgery to stay awake once the doctor gives you the anesthesia. Just because you can relate to the feeling of being tired, does not mean you know what it’s like to have narcolepsy. Having narcolepsy brings a huge inconvenience to my life and is a constant struggle to manage. I have an enormous hatred toward my excessive daytime sleepiness, but you wouldn’t know it from its physical symptoms. To many I probably come across as someone who loves their sleep, but I can assure you that this is not at all the case. There are thousands of diseases in the world, is narcolepsy the worst one? Of course not. But does it deserve to be treated as something more than just a poor sleep pattern? Absolutely.

  1890. Jill on February 7, 2015 at 7:53 am

    Julie, Great job!!

    One thing I have noticed about my Narcolepsy is that if I have a stimulating environment (e.g. lot’s of stuff to do, physical movement, new interesting experiences) my symptoms recede. My theory is that the physical activity and any time my brain is engaged in something new it “cues” my brain into wakefulness. And other experiences like being in a room with no windows, reading etc. cues my brain to trigger sleepiness. When you mentioned being awake all day with the reporter and crashing after, I knew just what you were talking about!

    Rest up girl! You have the world to change! 😉

    Jill

  1891. Laura on February 8, 2015 at 10:12 pm

    Very exciting! What radio show will your story be broadcast on? Be sure to update us when it airs!

  1892. Caralyn on February 9, 2015 at 11:24 am

    Awesome! I have idiopathic Hypersomnia/narcolepsy with developing cataplexy. Thanks for getting some truths and awareness out there

  1893. Alice M. Senerchia on February 9, 2015 at 11:34 am

    I’m grateful for your ability to share your personal & private life! Re: adrenaline-fueled wakefulness–my ex-husband could never understand why I fell asleep visiting his family and was such a “party girl” when visiting mine. When driving to an unfamiliar destination, adrenaline always keeps me awake, while a car ride usually knocks me right out. Situations like these caused him to doubt my diagnosis of narcolepsy.

  1894. Dan Conway on February 9, 2015 at 2:45 pm

    I just saw this – thank you Julie for bringing Narcolepsy and Cataplexy to network tv. Well done. Very validating to see this discussed.

  1895. Michelle on February 9, 2015 at 2:45 pm

    Thank you for this article. My son likes to brush after taking his Xyrem. Ugh. Guess he’s had four years of endangering his enamel. 🙁

    • KIMBERLY on December 14, 2015 at 4:29 am

      Within 3 months of taking zyrem, my teeth literally began just breaking,splitting
      , ,chipping..I was waking up with mouth full of tooth pieces! My teeth were always perfect until taking Zyrem. I’m now down to three upper teeth left w/o funding to get fixed. The Zyrem manufacturer needs to assist me now. As I had called when it started and they said it was not a side effect!! Arrrruuuggghhh If it crumbles your teeth, what’s the poison doing to your digestive system??
      I agree that taking care of your teeth n gums is top priority and really simple however most of the Narcolepsy/cateplexy meds will basically DESTROY your teeth regardless of your hygiene routine. The stimulants cause severe dry mouth and that also causes tooth decay. One more HUGE issue to deal with!! The gravity of this disease is so completely lost on pwon so we need start getting together and taking these problems into class action litigation!! That’s what forces drug companies to invest in safer more effective meds! Weenergy to stand up for ourselves.

  1896. Jessica Murphy on February 9, 2015 at 6:24 pm

    My name is Jess Murphy and I was diagnosed with narcolepsy with cataplexy in late October 2014. I’m getting my life back, to some degree, with Xyrem and Provigil plus lifestyle modifications including a ketogenic diet. I cannot thank you enough, Julie, for what you do for narcolepsy awareness and research. You’re a great advocate for us all! I can’t wait for you to post the video of your segments on The Doctors TV show. 🙂

  1897. Paula Slater on February 9, 2015 at 6:26 pm

    I wish I had cable! I have worked in the health policy arena on and off for 15 years and alongside thousands of physician providers for over a decade. It surprised me, despite years of study, that I had narcolepsy. What surprised me even more, however, was the fact that many of my physician friends and physicians care providers had little more knowledge set than a superficial definition of narcolepsy. Soon I realized why.

    It felt like a punch to the gut to acknowledge that my years long search for answers paralleled those of narcolepsy researchers. There hadn’t been much concrete information to teach before now. This sadly means that it will be several more years before this information can be translated into a pharmacotherapy. And joyously, it will only be a few more years.

    My hope is that recent developments in sleep medicine will push narcolepsy as a topic to be studied more frequently through Continuing Medical Education (CME). Sleep issues seem to be the foundation of chronic illness, and there are too many chronically ill searching for a name for the cause of their distress. Even if symptoms can only be “managed,” managing the perception of an individual’s struggle starts with a name.

  1898. renate French on February 9, 2015 at 7:39 pm

    I missed the show darn it! But I have had family and friends call all morning saying how excited they were to see a segment on cataplexy. I have narcolepsy with chronic cataplexy. It’s been 12 years now and it’s so hard to make friends. The few I have I found online and also have what I do. Thank you so so much for bringing awareness to these issues! Warmest hugs to you!

  1899. Michael Duffer on February 10, 2015 at 3:06 am

    Wonderful to hear about it. Though I missed the airing of it.. Let me know when you can share the video. I would love to see it.

  1900. jeanette barnett on February 14, 2015 at 2:02 am

    Thank you, Julie for your Wide Awake and Dreaming. I, too have Narcolepsy and was in Dr. Sack’s Hallucination book. Your writing about your narcolepsy inspired me to write a memoir for my family of my early days in life long narcolepsy. I’ve entitled it Shouting Glory, Glory, Glory: Memoir of a Narcoleptic P.K. (My father was a preacher thus I’m a P.K.). I kind of took off on the old saying: “Doctors’ kids are the sickest, Preachers’ Kids the Meanest, and the Cobblers’ Kids Have No Shoes”. You’ll never see my memoir in print (even if that were possible, because I wrote it for my children/grandchildren to help explain why I’m the way I was, and the way I am. My first hallucination was at age 3. I’m 81 and many who know me do not even know I have narcolepsy. I’m not ashamed; but very private, and do not like to talk about myself. (Do I protest too much, for I’m writing to you?). Thank you for writing about your narcolepsy. I, too, am an avid fan of Oliver Sacks and his books. I know there must be many others who found your book beneficial. You write well and should definitely write more, if you haven’t. I have your book on my Kindles.
    And thank you for sharing your Dr. Sacks experience! I wish he would come to St. Louis!

  1901. extreme tiredness on February 16, 2015 at 11:31 am

    Thanks for sharing the information about this conference.

  1902. Brendan Downs on February 16, 2015 at 4:26 pm

    Being 15 and having to deal with narcolepsy is really hard. i have NO friends not even one friend to talk to. I don’t understand why was diagnosed with Narcolepsy and i get made fun of it.
    So how do you other people that have narcolepsy deal with it?

  1903. megan on March 2, 2015 at 3:11 am

    Hello my name is Megan I’m now 25 years old I was completely healthy most people thought I had ADHD growing up but in September 2013 I got my first flu shot I became sick. I then started to sleep a lot on my job and I was a hair dresser so I knew something was wrong not anything I was use to. Anyways a lot more started happening to me on Oct. 13 2013 I was hospitalized my cataplexy in one of the worse cases to come out of st. Louis Missouri it only took me three months to be dignosed. The reason I wrote to you was that I believe that the shot did this to me my doctors think I’m crazy but I had no signs before or anyone in my family and my doctor has no idea how this happen to me. I have joined tons of groups but no ones story is like mine. So I saw your page and was hoping for advice on this. Thank you megan

  1904. Dorothylou Sands on March 4, 2015 at 1:31 am

    I have a new doctor and have just seen him once. I went in to ask for a prescription for my sleep medication and it too me a couple visits before he gave it to me. When I spoke to him about my sleeping problem his response was that there weren’t that many people that had narcolepsy. The next time I go to see him I am going to take him a copy of your book.

  1905. kelly on March 4, 2015 at 3:23 am

    Son gets the ok to donate plasma, but they refuse because having Narcolepsy/Cataplexy would upset the others who are donating plasma. A WTF moment. He is not sick. The hurt and the pain son feels dealing with stuff like this. It affect the whole family.. Thank you Grifols/Biomate USA

  1906. Leah on March 4, 2015 at 4:08 am

    I have a 2 year old and a 6 year old. I’m a single mom, and I have a demanding (but rewarding) career in public accounting. I am 31 years old, and I was diagnosed with Narcolepsy with Cataplexy in 2006. I believe my symptoms started in 2001.

    My first pregnancy was in 2007, and I miscarried almost immediately. At the time I was taking 120mg of Adderall a day. I stopped as soon as I found out I was pregnant just because I figured that was what would be best for the baby. I had just finished college and didn’t have a good narcolepsy doctor or a good OBGYN – which was a bad combination.

    I got pregnant again in 2008. By this time I had found a wonderful OBGYN, but I was still using the same narcolepsy doctor. I was super nervous since the first pregnancy had ended the way it did, so I stopped taking all of my meds and didn’t even drink any caffeine during the pregnancy. I slept all the time. It was difficult because I was already single early on in the pregnancy, and I was still working full time. Everyone in the office knew I had narcolepsy, but that didn’t make it any less frustrating to fall asleep while meeting with a client or in the middle of a tax return or in any other similar situation. I would wake up, struggle to get out of bed and *DRIVE* to the office, where I would usually sleep for several more hours on and off throughout the day. When I got home I would lay on the couch and sleep until about midnight and then I would go to bed and do everything all over again. On the weekends I stayed in bed pretty much the entire time. I remember people asking me if I was “nesting” or if I had everything I needed for the baby, and I would just look at them like, huh? I don’t even have the energy to come up with a name for the baby much less decorate a nursery and wash brand new baby clothes and go to child birth classes and all of the other million things they tell newly expecting parents to do. All I wanted to do was sleep. When I would go to the doctor, it was not unusual for me to sleep through them calling my name – I even had to reschedule a couple of times because I slept so long the doctor had left.
    OK – fast forward to the delivery. I practically slept through it. Seriously. I got to the hospital early in the morning because I was scheduled to be induced, but when I got there I was already having contractions. I was admitted to a room and I made sure to tell all the nurses that I had narcolepsy and that I would probably be their easiest patient ever because all I wanted to do was sleep. None of them had any experience with narcolepsy, which was disheartening. I got an epidural a few hours later, and slept until about 5:00 that afternoon (and felt lovely). Things started picking up pace and I delivered a 9 lb 5 oz baby girl at 7:15 that evening after about maybe 8-10 minutes of really intense pushing. Then I threw up the grape popsicle that I had begged the nurse for an hour earlier since they don’t let you eat while you’re in labor. I was fine, the baby was fine but a bit jaundiced. I had planned to breastfeed for at least a couple weeks, but we had to supplement with formula and once she had the bottle there was no going back. I started back on my meds and learned to change diapers and wash bottles in my sleep. I remember thinking after she was born, “what was I doing before she was here?” She gave my life a purpose that I didn’t know it lacked. She turns 6 tomorrow 🙂

    My son conceived in 2011, but I didn’t notice until about March of 2012 – when I felt him kick me. It was tax season, I was working long hours and I attributed the missed periods to stress and the weight gain to all of the eating out I do during tax season. I was taking 120mg of Adderall a day and Imipramine at night for cataplexy. I was seeing a much better narcolepsy doctor, and still using the same OBGYN. The narcolepsy doctor gave me what I think was a valuable perspective regarding the meds during pregnancy. He said it wouldn’t make sense to stop taking the meds that have never been studied on pregnant women and are not tied to any birth defects only to kill yourself and the baby in a fatal car accident because you couldn’t stay awake behind the wheel. He said that cases of pregnant women taking Adderall had to exist, and that if there had been birth defects that information would be available. The lack of information tends to indicate a lower risk for the baby. I did cut back and I tried to only take it for driving and important meetings. After tax season I really only took it to drive the 10 minutes home or to the office. I had no complications during the pregnancy and I delivered an 8 lb 6 oz boy in July of 2012. I even got to stay home with him the whole first 6 weeks since he wasn’t born in the middle of tax season.

    This is going on a bit long, I know. I just want to say that anything is possible. I couldn’t have ever dreamed what life with kids would be like. Yes, it’s hard. My daughter is starting to realize that I have different sleep habits than pretty much anyone else. She is also starting to take advantage of me dozing off on the couch by seizing the moment to raid the refrigerator or give herself a makeover. My 2 year old will randomly yell, “Mommy – WAKE UP!” even when I’m fully awake. I have a team of about three babysitters, along with a fantastic daycare that is walking distance from my office. I am in the process of getting rid of my car – I’ve been too lucky this far to keep pushing it. I’ve had dozens of accidents, with and without the kids, and we have been extremely lucky that none of them have been serious. One day soon my daughter can go get a hardship license and start driving me around maybe…. she’s pretty tall for 6.

    I would love to talk if anyone wants to reach out to me – I am always frustrated by not having more PWN in my life to talk to about pretty much everything. You can email me at leah.gillen@gmail.com

    • Ashleigh on September 2, 2015 at 10:23 am

      Thanks for your story Leah. My name is Ashleigh I am a 26yo living in Syd Australia. Myself and my hubby would like to try for a baby at end of year but i have many concerns. I have emailed you to ask you a few questions if you have the time (or energy ) to reply that would be much appreciated!
      Thanks Again

      • Marielle on November 2, 2016 at 1:14 am

        Hello Ashleigh,

        I wonder how you are doing and if you are pregnant now. How is it all going? 🙂

        I’m also in Sydney; I have narcolepsy and cataplexy (I’m being treated by Dr Brendon Yee at RPAH), and have a 2 year old son.

        At my last visit Brendon mentioned he was seeing a patient who was pregnant and continuing her mediations on low dosage. I asked him to pass on my details the next time he saw her.

        I felt incredibly isolated during my pregnancy because there weren’t any other people who shared my experience. I would be so interested to hear how you are doing, and also happy to meet up.

        We would like to have more children, but I am fearful of how I will cope physically without medication. I’m particularly worried about caring for my energetic toddler son and a newborn. I am trying to sort out a support network, and understand how our day-to-day lives will work. There are times already, even when on full meds I fall asleep unexpectedly and I notice I am in potentially dangerous situations.

        Also, I wonder is anyone else afraid of dropping a baby, or falling over with a baby during cataplexy?

        Best,

        Marielle

  1907. Felicia Jane on March 5, 2015 at 1:21 am

    I have to say- that you for writing this. My doctor told me I had severe narcolepsy (I was diagnosed in 2009) but I didn’t believe her because I have a good handle on staying alert. (I refuse to let myself be groggy during the day). However, I can say my ability to make decisions has been impacted as have my emotional well being. I find that I stay away from emotional stimuli and I realize it is a coping mechanism.
    As I discover more about my disease I am tempted to curl up in a ball and hide.
    But I have big dreams and I won’t let go over them.

  1908. Stephanie on March 15, 2015 at 3:29 pm

    Thank you so much! I think this might explain my childhood even. “Hyperactive” as a kid then diagnosed “Bipolar” at 15. My current shrink does not think I’m bipolar, just depressed. This gives me all kinds of hope to get off some of the drugs I’m on!

  1909. Rhonda on March 17, 2015 at 12:53 am

    I’d send this to the people I used to work for, but they wouldn’t read this just like they didn’t read any of the pamphlets I gave them on narcolepsy to read so they’d understand what was going on with me. Real understanding for a health care agency, huh? Rhonda

  1910. Carol on March 21, 2015 at 3:00 am

    Love it! I had planned to make a visual map of info with links for myself but an info graphic for my friends and family. I plan to make one that includes the gamut of sleep problems that I have that stem with Narcolepsy.

  1911. Jullia on March 22, 2015 at 2:00 pm

    Hello, man, this post is an eye opener for me. I have been told throughout my years that they thought i had narcolepsy. But i was always like nu uh. I dont randomly fall asleep where im standing. Etc.. but i think this could be exactly what is wrong with me and prob has been for the almost 18 years that ive been afflicted. Thank you on shedding some light, so that NOW i can seek the proper medical channels to maybe help my condition.

  1912. Lindsay on March 25, 2015 at 10:23 pm

    I am currently 12 weeks pregnant. I have severe narcolepsy. Before I found out I was pregnant I was on 150mg of Adderall and 250mg of Nuvigil. I now take 500mg of Nuvigil. I just had an ultrasound at 11 weeks and everything appeared to be going as normal as possible. Has anyone taken Nuvigil throughout their pregnancy. I do not function without meds I literally have taken med holidays and I sleep between 20 to 22 hours a day. Any information would be greatly appreciated. Thanks

  1913. Sarah on April 2, 2015 at 4:09 pm

    Hello,

    I’m so thankful for this website and blog. It’s nice to know that there are others who experience what I experience and understand what I’m talking about. I have a few questions for Lindsay. I am also a teacher and I have cataplexy. I’m wondering how that all works. Am I able to qualify for disability. That is one of my concerns, plus the fact that everyone else just will think I’m lazy. The struggle never ends

  1914. Aimee on April 7, 2015 at 3:43 pm

    I was diagnosed when I was around the same age! 27 now and also from WV. It’s awesome that you’re spreading awareness and doing what you can to maintain your dreams! Kudos to you, Daishia. I’m still having a hard time finding a support group in my area, though. Can’t drive so I try to find something online.

  1915. Arnold Gendelman on April 22, 2015 at 10:56 am

    Julie —- your global wings are as wide and strong as ever—-
    Congratulations on your international tour.
    Noticing attention to Anesthisists let me share my experience with you.
    Last year was a year of three important surgeries. First was cataracts removed in both eyes, done months apart, and second was the removal of three lymph nodes in my neck for biopsy.
    The pre-op interviews with the anesthetist was extremely important for discussing the issue of Narcolepsy and Cataplexy. Both anesthetists took great care in keeping me just under the no pain level for each type of surgery and, researched the type of chemical that would not interfere with Narcolepsy or Cataplexy and have a short period of recovery. I wore my NARNET Orange Medical Band for all medical personnel to be advised along with an index card I pinned to my gown saying, Please remember to care for me being a Narcoleptic with Cataplexy. All went quite smoothly, the full staff checking in with me during recovery to make sure there was no reaction. This is why it is so important for PWN’s to take great care in making sure we are treated medically in consideration of, and concerns for Narcolepsy and Cataplexy.
    Julie have a wonderful trip making sure you stay well hydrated and physically active as much as time and space allows. In Australia I wish you SA-WADEE, Aboriginese greeting for Recognition and Hello-Goodbye, meaning “I See YOU”
    Good luck, take plenty of photos and let us know of your great successes.
    Sa-Wadee
    Arnold

  1916. Stacey on April 27, 2015 at 12:35 am

    http://askjan.org/media/Sleep.html

    The bottom of the page has workplace accommodations

  1917. Paula Slater on April 29, 2015 at 9:41 am

    First and foremost: travel safe! Secondly, thank you for all your hard work!

    I’m inanely curious as to how well you sleep in Australia. Silly as it sounds. Was the schedule change a hard adjustment or a more natural fit?

    It would be interesting to get a Toastmaster’s Group together specifically for Narcoleptics (even if via Skype). One of my bachelor’s degrees was originally named “Speech Communications,” I’ve written a number of political speeches at every level, and I had great fun in Toastmoasters pre-baby and pre-diagnosis. However, I can tell that my skills are but rusty and potentially hindered by the N on a bad day.I won’t let that stop me though. We (someone with in one of the relevant groups) needs to train actual patients, like yourself, to tell their stories, raise public awareness, secure research funding and design interesting and memorable CME programs.The side effects of N (anxiety, memory, cataplexy) may limit some of the best advocates we have. But with pratice…comes comfort.

    Ten years at a medical associaton and not one of the thousands of medical students I spoke with had an interest in sleep medicine. In a city the size of Austin, there should be more than two and the wait shouldn’t be 1-3 months. I hope one or more groups are working recruitment efforts. Haven’t seen one yet.

    I’m e-wake and postulating.

    Thanks again!
    Paula

  1918. Christine on May 6, 2015 at 8:25 am

    this is so relieving to read to know that I’m not on my own. I have Narcolespsey with Cataplexy. I was diagnosed in 1999 but had symptoms since I was 11. I am pregnant (9wks) with my fifth child. My two eldest are older so they help me a lot when my husband is at work. I come off my med whilst pregnant and go back on them when the baby comes. I have a nap just before dinner when the little ones go down for theirs and then I’m usually falling asleep once they go to bed. I don’t know how or why but the Cataplexy seams to ease off during my pregnancies, the tiredness though sometimes gets too much. So my mum comes round to watch the kids so I can nap. Mum stays with me before labour to prepare and rest and then for the first week after baby is born. I am very fortune to be able to be a stay home mum and have a supportive family. I sometimes feel my husband doesn’t full understand how hard it can be having Narcolespsey and being a parent. Mum is great because she has seen how it has effected me growing up.

  1919. Michael on May 12, 2015 at 9:16 pm

    If anyone have some ideas I am listening.

    I am 65 and have had Narcolepsy since I was a child by history. Diagnosed in 1991 with Narcolepsy, Cataplexy and several other neurological problems.

    Could not drive from 1991 until 2000 when Provigil came out. It worked good until a year ago when I started having a variety of problems. I am now on Nuvigil and whether or not it will work is not for sure yet.

    My main problem is once in January 2011 I lost my vision completely for about 2 hours. In ER they had me on a Gurney for an hour which of course I slept. When I woke up I was fine. The ER Doctor and Ophthalmologist said it was a cataplexy attack. My Neurologist agreed. It has since happen partially in the left eye several times and one more time of blindness. Again all agreed it was Cataplexy. Now have seen a Neuro – Opthamologist who says the doctors are wrong. Narcolepsy could not effect the eyes.

    Anyone have any knowledge or experience with eye problems.

    • Lauren on August 8, 2020 at 2:51 pm

      Michael, I don’t have any answers for you I’m afraid, but I also experience temporary vision loss in my left eye. It doesn’t happen very often these days but several years ago it was every night. I have 20/20 vision and after a heap of eye tests the Opthamologist was left stumped. MRI showed white spots in my brain similar to MS but neurosurgeon ruled that out and decided it was a compressed nerve in my neck sending the wrong signals to my optic nerve. Subsequent MRIs have shown the white spots slowly disappearing, which is interesting considering the vision loss has also mostly disappeared? This was all before I finally got the NwC diagnosis and I don’t think I’ve actually ever thought about any connection between the two, until reading your comment! I’m sorry that my comment is absolutely no help to you at all, but I wanted to let you know you’re not alone!

  1920. Amanda on May 16, 2015 at 2:54 am

    How bout having a doctor not telling a patient that has been diagnosed, that he “Doesn’t think you have Narcolepsy, even if the tests show you go into naps within a few minutes; You’re making yourself like this by not being on a early am wake up schedule. I don’t think anything is wrong with your brain.” Most horrible doctor experience of my life. How Mr. Dr. do you then explain the cataplexy?

  1921. Denise Scogna Schramm on May 17, 2015 at 10:24 pm

    Julie,
    My sister just met you at NSU. She was the caterer who spoke to you about her narcoleptic niece. That is my daughter Emma! Emma is doing her Senior thesis on Narcolepsy. She would be over the moon if she could interview you. Even if over email.
    We loved your book. It was so enlightening, and engaging.
    Thanks for being an ambassador for this relatively unknown disease.
    You are truly an inspiration in our family.

    • julie on May 18, 2015 at 1:49 pm

      Hi Denise, Thank you for contacting me. It was nice to meet your sister at NSU, I only wished she could’ve attended my session and we’d had more time to chat. Anyway, please tell Emma I’m cheering for her and to contact me at REMRunner01@gmail.com about scheduling a time to speak. Thank you!

  1922. Gino on May 19, 2015 at 5:19 pm

    Thank you for these! Along with your book, they have been very helpful for myself and family to understand the condition.

  1923. Jenny on May 23, 2015 at 1:20 am

    My daughter recently turned one. When I was pregnant my narcolepsy was almost no existent! My doctor said this made sense because it is an autoimmune disease and those can be suppressed when pregnant. However, once my daughter was born it came back full force. My wonderful husband did all the night time duties! We decided this was best after several hallucinations involving the baby.
    She is a toddler now and I am a full time teacher. I am exhausted. I want so badly to take a nap, but I also do not want to waste those 4 hours a day I get to spend with my daughter. It’s really hard managing everything. My husband tries to understand, but he just doesn’t get it. He is frustrated at the fact I can’t decide what to have for dinner. He doesn’t understand how hard it is to make simple decisions and that I am more than just tired.
    Finding this blog helps. Knowing that I am not alone and what I feel is “normal”. Well normal for us!
    Thank you and please keep posting, so I don’t feel so misunderstood!

  1924. Michael Hennessey on May 25, 2015 at 4:34 am

    Hi,
    I have trouble in grocery stores or the main area in malls. My leg will buckle or my arms will go limp. Rarely completely collapse with medicine.
    Heat also gets me and physical work in the yard like mowing or taking my legs will buckle. It is kind of funny with mowing if I mow in rows I buckle when I turn so I mow in a big circle going large to small.

    My eye site gets messed up with severe stress to the point I have lost it twice. ER lets me sleep for an hour and I am fine.

  1925. Saraiah on May 30, 2015 at 5:07 pm

    Oh, you GO, gal! Your lethargic feet – and those of so many in our sleepy community – accomplish such amazing things. Thanks for your example of how to keep going even when the going feels like slogging. So proud of you – and I know your Dad is too. <3 <3 <3

  1926. Shona on May 30, 2015 at 9:51 pm

    Wishing you all the best from Queensland. I am sure you will do amazingly well. We will be cheering you on from the other side of the world xx

  1927. Kathy Devita on June 7, 2015 at 11:07 am

    Hi Julie, When I was younger, and not diagnosed yet, I survived by waiting to do things the last minute which gave me the “burst” of energy I always desperately needed. I usually drank coffee all day, too. While reading about your marathon preparation I laughed because I would have never have been able to do a marathon unless I did it while being totally asleep! When younger I could vacuum my house while asleep (which was great) but I never did a real marathon. Yet thinking back, as I write now, many steps in my life really felt like the “longest run”. So, Julie, I must say I admire your inner strength and I am thankful for all your effort and progress in bringing the sometimes ”agonizing” world of a narcoleptic to the public’s attention.

  1928. Melissa on June 8, 2015 at 12:28 am

    Looking forward to reading part II!

  1929. Jane Maxwell on June 8, 2015 at 9:59 am

    Brendan I feel so much sympathy for you. Some people are very cruel, as you get older you will make friends because they will be more mature and understanding.I was lucky that I didn’t get the full monty of symptoms until my 50s. You will find that with control by drugs I take Venlafaxine for cataplexy ,modafinil to keep me awake and as small a dose of mirtazipine to get me some sleep. Now don’t quote these drugs everyone is different , there are different products and different dosages. These make me function ok and I can travel on my own to far off places when I once was unable to laugh, like I had to turn away and try to stop laughter. Brendan I do hope you find the right medication ,diet and exercise so it won’t seem as though the symptoms are in charge.Read Julie’s post, you will undoubtedly have to learn to live with a foggy head ,lack of sleep,falling asleep in the movies, TV , a boring lecture at times , but as you gain confidence those teasers will diminish, i do hope so. You are still you, remember that.

  1930. char on June 11, 2015 at 1:49 am

    Hello It’s amazing reading all the stories from people going through the same things as me when I have felt so alone all of these years. I have n with c and am 27 years old. my boys are two and three. For the longest time I thought I had post partum psychosis because of the hypnogogic hallucinations. but it didn’t stop. My family has made me feel embarased for sleeping and for the Times I zone out. I finally signed myself into the hospital only to be told that I had an anxiety disorder and that child services would be visiting because of the black outs and times that I wasn’t able to move. so when I saw the scycyatrist and sleep doctor I didn’t repete what I had said for fear that they would take my children away.
    Big mistake! The sleep doctor had mentioned that I had entered rem to fast during the sleep test and mentioned narcolepsy so I looked it up a few days later. All my questions were answerd. Now I don’t think my doc believes me and for good reason. I wish I hadn’t been so ashamed. My message to anyone in the same position is to be fully upfront with your doc because having toddlers and untreated narcolepsy isn’t fun especially when you fall down whenever you get stressed. I’m going through testing now but wish I had done so earlier. The c-pap is helping and I have an angel for a husband. thank you so much for your comments they are so helpfull!

  1931. Rebecca Fuoco, MPH on June 12, 2015 at 7:34 am

    Perfect response, Julie! If television/film writers want to make fun of my condition that’s fine (I’m not the PC Police) *if* they portray it accurately. But, like you say, the real narcolepsy isn’t as conducive to slapstick comedy as the Hollywood narcolepsy. If they want to include a character that goes from fully alert to deep sleep in zero seconds (with convenient comedic timing), maybe they can just call it something other than narcolepsy? Medical dramas make up diseases all the time…

  1932. Trudy Kempf on June 12, 2015 at 7:32 pm

    GREAT JOB!! Long before I was diagnosed with Dystonia and Narcolepsy, it was my dream to run GREAT JOB!! Long before I was diagnosed with Dystonia and Narcolepsy, it was my dream to run Boston Marathon. My running days ended long ago, however you have inspired me to, maybe not run right away, but at least put one foot in front of the other. The pace and the distance are less important at this point. Just taking advantage of my waking moments to live my life to the fullest is my goal. Thank you for your blog.Boston Marathon. My running days ended long ago, however you have inspired me to, maybe not run right away, but at least put one foot in front of the other. The pac

  1933. Kathy Herbst on June 12, 2015 at 7:59 pm

    Hi Julie,

    Great blog , as always. For the first time since meeting you and following your blog 6 years ago, I have a disagreement with your choice of words in the title. Are PWN victims? Do we see ourselves as victims? Maybe there really isn’t another word that conveys the reality of having and dealing with this condition but To me the word victim includes helplessness and lack of control. Does the negative label contribute to self image? If you call yourself victim will you see yourself as one?
    We are so fortunate to have you as a spokesperson!!!!

    • Rebecca Fuoco, MPH on June 14, 2015 at 12:18 am

      I think her choice of “victim” in this case was to go along with her sarcastic observation of a narcolepsy “epidemic” among tv/film characters. (Usually news headlines about epidemics use such terminology.)

  1934. Steph on June 12, 2015 at 9:49 pm

    Well done Julie! A great achievement and something to be proud of. I did my first half marathon last year (and also have narcolepsy) and relate to that feeling of being in control and not defined by narcolepsy. The feeling of cross the finish line is unbelievable.

  1935. Jo Poplawski on June 12, 2015 at 11:06 pm

    Hi Julie!

    Here are a few more TV and movie references for your infographic!

    Keep up the good work.

    Jo Poplawski

    TV Shows with Narcolepsy
    —————————————

    Doc Martin
    http://www.imdb.com/title/tt0408381/epcast

    Wipeout
    http://www.huffingtonpost.com/2012/07/11/wipeout-narcoleptic-falls-asleep-on-course-video_n_1663934.html

    Black Box

    Scrubs (S02E17)

    Perception S02E02

    The Interrogationists S01E05 – “The Narcoleptic”

    The Oblongs S01E02 – “Narcoleptic Scottie”

    —————————————
    Movies with Narcolepsy
    —————————————

    Narco (2004)

    Prince Valiant (1997)

    Problem Child 2 (1991)

    Narcolepsy (2014)

    Diagnosis Narcolepsy (2002)

    Sleepwalk with Me (2012)

    The Wedding Date (2005)

    Taking Lives (2004)

    Kontroll (2003)

    Phantoms (1998)

    20 Centimeters (2005)

    The Tale of a Suicidal Narcoleptic (2008)

    Narcolepsy (2015)

    Narcoplesia (2014)

    Memento (2000)

    Anastasia Has Narcolepsy (2014)

    Scary Movie 3 (2003)

    Parasomnia (2008)
    http://www.imdb.com/title/tt0922547/

    Shuffle (2011)

    Look Who’s Talking Now (1993)

    I Know Who Killed Me (2007)

  1936. Dorothylou Sands on June 13, 2015 at 12:20 am

    Nice article. Have you seen the full page ad from Jazz Pharmaceuticals’ in the July Better Homes and Garden magazine regarding Narcolepsy? I thought it was done in good taste, but that is just my opinion. I will have the gathering at my house again this July. Hope you can come and bring some of your books.

  1937. kathy srp on June 13, 2015 at 3:44 am

    no there is not a support group in Springfield for narcolepsy.

  1938. Kathy Pinter on June 14, 2015 at 5:22 pm

    Phil on Modern Family catching a case of temporary narcolepsy was especially ill-informed. Thanks for the article!

  1939. Karen Allyn on June 16, 2015 at 5:09 pm

    Julie my brave gal,
    I’ve been reading your stuff on this & am so proud of you.
    Keep on keeping on. You’re one of a kind.
    Karen

  1940. M. Briganti on June 19, 2015 at 7:28 am

    One of kind. Julie is an atypical type 1 narcoleptic who must respond very well to Xyrem, or is on and can tolerate high doses of Adderall without developing tolerance or cardiovascular problems.

    The problem is Julie makes narcoleptics who may not tolerate or respond to the medications prescribed for it look lazy, so maybe she’s the one misportraying typical narcolepsy and doing harm, not the Simpsons. Some of us have heart problems with Adderall (tachy, arrhythmias, etc.). For half of us, Xyrem does nothing. A third of us develop an acute tolerance to Adderall. Do you really using speed every day for the rest of your life is healthy Julie?

    We don’t need awareness — we need better and safer treatments. How is Julie helping us by getting up on stage and appearing fully alert without telling audiences that she’s jacked up on speed, or takes the date rape drug every night … TWICE! Even GHB addicts cringe at that thought.

    • Nichole on August 21, 2015 at 5:32 pm

      M. Briganti,
      How can you say that those of us with narcolepsy don’t need awareness? Narcolepsy is an extremely undiagnosed illness, many doctors don’t even know the classic signs and symptoms. The time between the onset of symptoms and being diagnosed is years on average, because narcolepsy is generally not considered.

      Julie is atypical considering, according to her, she has experienced all of the symptoms of narcolepsy. If you read her blog you would know that she has gone through many different treatments to find what works for her. She has also said that narcolepsy is a not cookie cutter, and that her experience is not everyone’s experience.

      I can feel the jealousy seething from your post when you’re implying those of us who take Xyrem or a stimulant are “jacked up on speed”. Just because a medication didn’t work for you doesn’t mean you should insult those of us it does work for.

      I personally find Julie inspiring. She has the courage to go on camera and talk about a very personal illness and newsflash, most of us with narcolepsy who do work have times where we have to appear alert when we’re actually extremely exhausted.

  1941. Dorothylou Sands on June 22, 2015 at 12:12 am

    Seventy years ago I wish I could have found someone to diagnose that I had narcolepsy. I fell asleep in my after noon class in the 8th grade I was almost 30 years old when a doctor said I probably had narcolepsy. Even in the sixties there weren’t that many sleep centers available. Living with Narcolepsy is not easy, but it was more frustrating knowing that no one believed that you could not control your sleepiness. D. L. Sands

  1942. Kate on July 8, 2015 at 12:10 am

    So is there an audio version available yet?

  1943. Callie on July 11, 2015 at 7:16 pm

    I am so glad that Shelby shared this poem! What I was most affected by was the things that she shared about herself. I’ve had similar experiences with my symptoms in my life, although they are not the same as hers. What completely echoed with me though, was the last line, “wants people to understand her narcolepsy without letting it define her”. That has got to be my biggest struggle. Especially as a 17 year old who is still trying to figure out who I am, narcolepsy is not helping out with that at all! It was nice to know that I’m not alone in feeling that way. 🙂 To the point of this whole comment: thank you Shelby!

  1944. delayed2sleep on July 12, 2015 at 3:19 pm

    FYI.
    My PC refuses to play the 2 videos in this post. (Owen, the 11-year-old boy, played fine as your videos usually do.) Internet Explorer gives me the message that it has stopped working. After several tries, I get a whole page telling me to stop trying.

    You needn’t approve this comment. Just thought I’d let you know.

  1945. Chad on July 19, 2015 at 3:36 am

    I always thought there was something wrong, didn’t know what, lots of hungry, lots of hurry through days, manic energy when on foot, dreading sitting down for a class, I know sleep is coming whether I like it or not. I’ve become known as this guy looking for an excuse for why I can’t ______. Or why I didn’t ______. I don’t have physical cataplexy, have never fallen in a heap like I see in videos. I was diagnosed in the fall of 2013 and the doctor told me I would have a whole new life. I told her I’d be happy to get the baby elephant off my back. So infuriated when I CANNOT sit for 10 minutes without a sleep tidal wave, but I can get up and run 5 miles or bike commute home. I was awakened once in college in class by the sound of my head hitting the desk. Every one around me is giving up on me relationally. Sister, Dad, wife, employers (and past employers, plural) nobody feels relationship comes from me. I know nothing occurs to me when in a relational situation. Actually have NO thought whatsoever sometimes. I’m taking Nuvigil and Adderall (had taken Efexor instead of Adderall at first – what a disaster – couldn’t give attention to text – missed a month of personal banking and got lots of delinquency mail. I seem to freeze real hard when emotions are high with people close to me. They hate it that I don’t communicate – then emotions go up more – which makes it harder for me to talk at all – Its like Chinese hand cuffs, the harder you pull the more stuck you become. Can a person have emotional cataplexy?

  1946. Jay on July 25, 2015 at 10:03 pm

    I have a bizarre sleep disorder that has been diagnosed differently by three different neurologists(one a narcolepsy diagnosis). After 21 years I just finished my first AS degree at Purdue. Now I have to figure out how to continue to my PhD!

  1947. Kathy Devita on August 2, 2015 at 10:36 pm

    Congratulations Ms. Flygare.
    You certainly deserve the award. I think you drew more attention to the public regarding Narcolepsy than any one person or corporation. Your “Not Alone” campaign phrase is being used and that helps promote the words Narcolepsy and Cataplexy. I don’t get the “blank” look as often as I did when I say I have Narcolepsy. So, again, thank you.

    I was going to write a lengthy comment but I will try get to the point as fast as I can. Narcolepsy is rare and often “hidden” (gosh – we get really good at hiding it). To declare we need a nap place or any “special” accommodations still seems like a selfish idea to us. I think, even after being diagnosed, we carry all the staminas that plagued us for years. Over the years embarrassment, possible physical harm, mockery and the self-hatred and self-doubt issues had been added to our need to try harder, do things twice or three times, constantly scrutinize our own sanity and question ourselves and our abilities. Before diagnoses we handled many things HOPING we could get through work loads and daily problems We took on everything as if there was no lack of strength. After diagnoses we do our best to deal with problems that we now KNOW exists, by strata sizing priorities often in a totally new way than we had done for so long in the past…
    We wind up scrutinizing our actions and making ourselves feel as inadequate as we did, all those years, before being diagnosed.
    But remember Ms. Flygare, thank goodness your diligence and commitment to great work ethics that helped achieve what many others could not. Narcolepsy continues to get recognized and supported by your help self and your team.
    .

  1948. Chris on August 3, 2015 at 6:34 pm

    Congratulations on the award Julie. I got goose bumps reading about your experience at work. It is a reminder how much of a challenge it is living with Narcolepesy. I can’t tell you how many times I have had the same issues when I am at a company golf outing, business seminar, family get together, etc. Sometimes it’s impossible to go out to your car and grab 10 to 15 minutes! I am lucky that I own a small business – I have a futon in my office! Nonetheless, I had to have “that conversation” with my employees about my illness. At first I was embarrassed and felt very exposed. It is such a weird disease – it’s not like it is a terminal illness but it is a very life altering and real for those of us that have it. I am so happy that you have found a company that is accommodating. They are lucky to have you! You are a “superhero” to people like me that have this illness because of your efforts in educating people and being an advocate for us!

  1949. Rebecca on August 3, 2015 at 7:14 pm

    Hi Julie! Congrats on what I’m sure is your well deserved award. I’m sorry to hear how difficult it’s been to be honest about your sleepiness and ask for accommodations, but I admire your courage and candor in self-disclosing. As amazing and inspiring as you are, you are only human, like the rest of us. I am sure you and your positive spirit are a huge asset to your workplace environment and in glad they appreciate you!

  1950. Dorothylou Sands on August 4, 2015 at 12:20 am

    Very nice article. I don’t remember when I started telling people I had Narcolepsy at work. I think I did it more to make people understand that I was not lazy or staying up all night partying. Many of the people I worked with had more faith in me than I did encouraging me to become a teacher instead of a Clerk typist. I made many quick trips to the teacher’s lounge and to the restroom. Sometimes just 5 or 10 minutes took me back to work in a normal state.
    We missed you at July’s meeting. There were just 5 of us there.

  1951. Phillip Satkowski on August 4, 2015 at 1:52 am

    Congratulations Ms. Flygare,
    I am excited to read of the reward that you received and undoubtedly earned and deserve. In response to your post on taking naps I have a few questions as well as an experience of my own. I am also narcoleptic with cataplexy, and am also epileptic (tonic-clonic epilepsy). In fact, I share a lot of similarities with you that I read about through your memoire, I am also from the Boston area and am the same age as you and was also diagnosed with narcolepsy close to the same time as you. That aside, I would like to share my own experience with naps and also with taking stimulants. I remember when taking my MSLT I had already been prescribed to adderall for a few months and was a bit confused in the morning when they told me to take my medication and also to return to the sleep lab every two hours for a nap. I hadn’t yet realized the strength of narcolepsy as I had been living with both epilepsy and narcolepsy and have always had a very hard time distinguishing between the symptoms of each. Similar to your own experience each nap showed 20 minutes of REM, I was often told that I was in REM before they finished hooking me up to the EEG machine. Stimulants have had some positive results for me but have never had the strength to keep me awake when a heavy sleep fog rolls in. Naps have also seemed to have dangerous consequences for me. They often result in sleep paralysis and have lead me to having a fear over trying to nap during the day. The second result is that I often times simply can’t limit a nap to anything under a few hours, that would be a nap taken in my bed or on a couch. If however, I fall asleep sitting in my chair or in a car, a 15 to 30 minute nap has always been very effective for me. As of right now I am still on long-term disability, however I am pursuing an online degree and when I think forward to someday being employed again I don’t know how would I go about taking naps in a regular employment environment. Any insight and advice would be welcomed and appreciated. Thank you,
    Phillip Satkowski

  1952. Gail Pean on August 4, 2015 at 4:34 am

    Julie,
    Congratulations on the Award of Excellence! You are so courageous to admit your fear of taking a nap at work. You are only human. Living in the shadow of feelings and overcoming fear of failure is difficult for everyone. Thank you for sharing with us your journey including the struggles and successes!

  1953. Joanne on August 4, 2015 at 5:12 pm

    Hi Julie
    Yes Congratulations on the award of course , you amaze and inspire. Also as you can never hear it enough but you are a beacon of light to so many. Your article brought tears to my eyes as it so with resonates with me as I’m sure many others. Honestly napping in the car in winter months isn’t an option and when this area of illness is misdiagnosed, misunderstood and under educated to the Medical field it is priceless to see and have someone bringing this awareness to such a level. It certainly seems like your calling has found you and I as many are grateful for that. 🙂 Thank-you and Congratulations again

  1954. Jo Jo on August 7, 2015 at 10:13 am

    Great article.
    I have to say it made me smile to see that even you are struggling with telling other people about narcolepsy / pushing for the proper work conditions ;).
    I know what it’s like to sneak out hoping no one asks where we’re going, or pretend to be there when all you’re really doing is scribbling illegible, nonsensical notes. I dit it too.

    We all feel like we have to prove something when we get a new job, so it’s only normal that you don’t want to ‘rock the boat’ when everything’s fine.
    That being said, I can’t be too indulgent with you. Here are some points I’d like to mention. They’re based on my experience so they’re quite opinionated.
    * There is NO WAY you can be happy with your productivity if you don’t take a nap in a day of work.
    * Actually I think there is no way you can be truly happy at all in these conditions, this is just too psychologically and physically exhausting.
    * Of course the stimulants are prescribed by your doctor so they must have positive effects. This does not mean that they have only positive effects: I doubt increasing the doses is good for long-term health. Much like “barely eating” by the way.

    I don’t always talk about my narcolepsy at work but I always say “I need to have a nap every day after lunch”. When people forget about it I remind them. I am yet to meet a situation where it is a big deal for people (which does not mean I get a nap every time in good conditions).

    It only looks like it’s going to be a hard conversation because this is so important to you. But really, the point is just to explain you need a nap every day. For the people you work with, well… They don’t care!

    Bottom line: I hope you don’t allow yourself to do this next time. There’s no rationals behind it, only classic narcoleptic psychological issues.

    I hope my tone was not too lecturing, I just wanted to share my experience. I’m still struggling on a lot of topics when it comes to managing narcolepsy but I promised myself: no more sleeping in the toilets at work, ever.

    On a final note, if things were all easy for you then what would be the point of you advocating narcolepsy ;)?
    I do think that makes your testimonials even more relevant and relatable.

    Thanks for sharing your story.

  1955. Kerida on August 10, 2015 at 6:25 pm

    Julie,
    Congratulations on the award, the wonderful job, and all you have accomplished.
    I have to say, this entry it the one I have connected to the most so far; it brought me to tears because it mirrors my experience so readily. I was only diagnosed with Narcolepsy this past January and I was lucky in that I was not misdiagnosed a bunch first: I took my symptoms to my doctor and within 3 months had a diagnosis.
    The thing about that short time was that I didn’t have any time to process what I was going through, and no one took the time to really talk to me about it. I fought the Nap not because I was embarrassed to admit it–my coworkers were supportive of daily naps–but because I didn’t want to believe I needed it. I partook in all of the behaviors you listed above; I work as a Physical Therapist and I was sure everyone could tell how out of it I was, but no one did. I pushed through the days until my head ached and I felt nauseated and I went home to collapse–I could barely remember what I had done all day. And I work with people who have chronic pain; I am always telling them to be kind and gentle to themselves, to take the breaks they need, to accept their limitations without accepting defeat, but I didn’t–and in some ways still haven’t–accept my own instructions.
    I am at a point with Narcolepsy that I need to hear about the struggle, I need to live it and stumble and learn, because I know I will be ok and I will come out on top in the long run, but I’ m not going to get there by ignoring the problem.

    So again, thank you for sharing. The stories of missteps are just as important, just as inspiring, just as beautiful as the stories of triumph.

    Peace and all good to you,
    Kerida

  1956. Anita Edmonds on August 18, 2015 at 1:58 pm

    Hello Julie,
    I’m so pleased for you to receive this work related award!! No question on deserving it from your work ethic and dedication, not to mention positive spirited personality!

    You know what your health conditions were while achieving it, so even more deserved. As other bloggers expressed, I was touched by your honesty in self-disclosing napping/meds issues. What a thin line between our personal integrity /need for independence and following best practices for this disease. I get that so well. Bless you. I am eager to read Part 2.
    Keep learning how to deal with this disease and remember to be kind to yourself. You are my hero for so many reasons. Your book is one of them. Well done.

    I’m seeking diagnosis for narcolepsy with cataplexy at University Hospital. I’ve suffered with all these weird symptoms since 2001, been misdiagnosed with Myasthenia Gravis and Lupus. I lost two jobs from health struggles taking early retirement. It is easier to stay home and “try to control it” but you always live with worries of when events will happen. I especially hate both the lack of understanding from people as well as the over-protectiveness when ill.

    Again, Julie, your courage, spirit and dedication to share knowledge and personal stories are getting me through. Thank you.

  1957. nebet het on August 19, 2015 at 9:09 am

    My son 7 has just been diagnosed with N without C, this site (page!) has illuminated so many dark areas of my sons life. It is sad, that as parents we didn’t know how to help, but really encouraging for our future.

    Our pediatrian said exactly the same thing about our boy sleeping after 5 minutes in the car – “I go to sleep in the car too” but I never had such an insightful response as Julie.

    N is not rare actually, it is simply under diagnosed.

    Thanks again for an awesome resource

  1958. Jennifer Slodysko on August 22, 2015 at 1:48 pm

    Julie this is an amazing story, thank you so much for having the courage to share your vulnerabilities with us! It’s a great reminder that we need to work within our limitations in order to achieve balance!

    Lately I’ve been guilty of doing just the opposite! I began working in home hospice this past May and I absolutely LOVE my job. It’s a part time position which is perfect for balancing my energy levels and time with my family. However, we’ve had a steady rise in patient census and began the process to hire more RNs. Long story short, I’ve been working 10-16 hour days, 6 days a week, since June. There has been no balance to say the least!

    But there’s a happy ending! Next week is the final week I’ll be training one of the full-time RNs we hired. The following week is the week before my kids go back to school and I requested the whole week off to spend with my family! And when I return to work I will truly be working part-time hours! My supervisor and co-workers have all been very supportive and have recently been made aware of my narcolepsy diagnosis. Although a temporary increase in workload ended up being dragged out across three long months, I now have boundaries in place going forward.

    Thank you again for all that you do Julie to empower the narcolepsy community while also reminding us that we’re only human. Working With Narcolepsy Parts I and II have really hit a tender spot in my heart!

  1959. Claudia on August 23, 2015 at 12:20 am

    I am so happy I found this! Thanks for sharing, it just so happens that my husband and I have been married for only 5 months and we want to have a baby next year but I am terrified about going off my medication; I am on Concerta and Ritalin adding to 64 milligrams a day (very allergic to Modafinil) and need to gradualy go down to nothing two months before conceiving; at least that is what my neurologists recommended but it is so scary, I am currently unemployed, I know I am a wonderful teacher but this is the third job in 9 years of my teaching career when I have been laid off because they found out about it, I pretend to be ok about it but it really does hurt my sense of self worth which is why I am so afraid of going back to my unmedicated self, I even worry about my husband getting to know the real me, I feel like a werewolf approaching the full moon and I wish I could just hide away for my whole pregnancy and nursing time 🙁 do you have any closed group suggestions on FB or something? Something under the radar though… Only close family and friends know I have narcolepsy and whenever anyone else has foud out it has brought me mayor shame 🙁

  1960. Ashley on August 23, 2015 at 4:40 am

    I rarely get teared up reading but this brought the tears. Perfect.

  1961. Holly Twedt on August 23, 2015 at 4:55 am

    I so related to this moving story of your experience in your new job. I am unable to work in my beloved profession of a social worker due to sleep disorder issues that negatively impacted me in the workplace. My former employers reported me to the state regarding my work place problems that were sleep disorder related and are trying to remove my license to practice as a social worker. Have some cognitive functioning problems related to the sleep disorder issues and am have mild cognitive impairment. I am not giving up. Somehow I will find meaning and purpose in my life and go on and thrive. I am trusting in my faith in God and resting in this in spite of the above reality.

  1962. Dorothylou Sands on August 23, 2015 at 8:08 am

    I look back on my years of fighting sleep and feel so thankful that most of the people I worked with were very understanding. A couple did not understand. I was lucky to work where I could run out of the office and lay down in the teachers lounge if only for a few minutes. There were occasions I ate lunch with 4 ladies and dozed off for a few minutes while we were having lunch. Everyone seemed to know this happened to me and they rarely said anything. I didn’t take my medication a lot until the last couple years. I used it mainly for attending night school.

  1963. Nancy Preston on August 23, 2015 at 6:06 pm

    Thanks for all you do Julie! Thanks for advocating for all ! Narcolepsy , Narcolepsy with Cataplexy, Hypersomnia, and KLS!
    when you tell your story you draw us all in and tell it with emotion . Even though we have heard your story a couple times now we hear something new each time. We cry with you and will never forget the fisrt time our entire family met you and cried with you.
    Our family will always be there to help you in any we we can.

    Randy Nancy Kayla and Trevor Preston

  1964. Grandma on August 24, 2015 at 12:51 am

    Thank you so much for sharing your experience, strength and hope with others who have Narcolepsy and those of us in a support role. You are such an inspiration to my granddaughter , 22 who was recently diagnosed with Narcolepsy and Cataplexy. Having completed almost 2 years of college, it was a devastating blow to her to find out she had an incurable sleep disorder. She was unable to complete her 2nd semester because of the symptoms and the lack of a competent doctor to treat her. Her whole world was shattered as she had hoped to be able to work with children. She feels isolated, depressed and dependent on others now that she’s no longer able to drive. She is in the process of getting her medications regulated and will soon start on Zyrem. If things go well, and she can make the necessary adjustments, she hopes to continue with her education.
    She’s looking forward to participating in the 2nd Annual Project Sleep Event in St. Petersburg, FL next month on Sept. 5. She is hoping you will be there too.

  1965. Gail on August 24, 2015 at 6:12 am

    Julie, thank you so much for sharing this story! A wellness room seems like it should have been a simple thing, especially when you are so open about your N, and yet your struggle clearly shows how people just don’t “get it”. I think this is a wonderful example that others could use who maybe aren’t able to be as open. I love how it ultimately turned out to be a benefit for so many people! Would you be willing to put this into a downloadable/printable document? I think it could be a useful tool for others to take to their employers in an effort to promote wellness for employees (and PWN in the process!!) Thank you for all that you do!

  1966. Lynne on August 26, 2015 at 3:28 am

    Julie, I think all PWNs know why you get emotional when HR or individuals at work take a genuine interest in your needs. How wonderful that you have started a trend of sleep wellness at the work place. It takes humility to accept who we are to ourselves and even more humility to ask others to accept who we are and what our needs are.
    I think your volunteer efforts are wonderful. But schedule respite every week for yourself. All work and no play will catch up to you. Good luck. And thank you.

  1967. Ben on August 26, 2015 at 9:58 am

    Julie, you’re awesome… to read this breaks down some of my walls just a little. I cried and I felt things that made me feel human, and like I can do this. Tomorrow may be a bright productive day:) though it’s been rough lately, getting in about an even day per week that’s at all billable. You are so right about “hope” outlook is everything. We love you!

  1968. Sadie on August 26, 2015 at 1:09 pm

    Your “I fought the nap, and I won” article is amazing! I’m so happy that this has worked for you! Despite challenges of human behavior in others, it sounds like you have incredibly supportive leadership at your company!
    Unfortunately my story of fighting for narcolepsy at my company did not work so well. My boss was a dragon, the HR lady was incompetent, and her boss was like the evil witch from wizard of Oz. I tried for a year, then after public humiliation, being wrote up, and living in a dangerous zombie like episode that never seemed to end, I went on LTD. I miss my responsibilities, I miss conversation, the challenges, and most of, respect from the rest of the working world. I followed the appropriate path to get an accommodation at my company, but it blew up in my face. You are so lucky and amazing for advocating for yourself.

  1969. Laura on August 26, 2015 at 2:33 pm

    So inspiring! Thank you for sharing this. I recently relocated for work–just a few hours away, not anywhere nearly as far as Katie! But I can sympathize with the distress at leaving my medical support network and upending the routines that had come to work well for me to manage my condition. Honestly, it was terrifying. There have been some hiccups, but a few months in, I’m managing pretty well, and being able to embrace some big changes has been invigorating. Thanks, Katie, for your example, not of fearlessness, but of carrying on despite your fears!

  1970. Alexis on August 26, 2015 at 7:22 pm

    Sometimes it feels like a curse to be a person with big dreams AND chronic illness, doesn’t it? But choosing to do what you’re doing with a medical disadvantage is the definition of bravery!
    I have narcolepsy as well, and chose to live in South East Asia for over 2 years. I know all too well that feeling of being untethered from a treatment plan, and the medical team you’ve spent years cultivating. During my time there I wasn’t taking my typical medication (as it was not available) but I managed to make it work with extra attention to a nutrient dense/grain-free diet, exercise, as well as alternative holistic therapies. I hope whatever aspect of your treatment plan you’ve been forced to abandon, can be replaced with a good support system and lots of self love and acceptance. Be well and have an amazing journey!

  1971. Trula on August 27, 2015 at 4:36 am

    Julie, please don’t be so hard on yourself! It took 50 yrs. for me to get a diagnosis of narcolepsy with cataplexy. I finally found a doctor who actually listened to me instead of judging me “lazy” as so many of them did. I’ve always had to work full time and have been accused of “being on drugs” when I would fall asleep after lunch or during a meeting. I still fight to stay awake with stimulants. I’m a pro at sneaking to my car to take a quick nap. I truly hate narcolepsy! I am so grateful to you for getting the word out, narcolepsy is a very real and powerful disease! Asking for a sleep room where I work is completely out of the question. It is such a comfort to know this will not always be the case. Because of your campaign for awareness about narcolepsy, one day we will all get that compassion! Sadness is a choice. Choose not to believe the lies that you are somehow failing. You are awesome and give so many more than you know hope. We need hope! Bless you!

  1972. Dorothylou Sands on August 27, 2015 at 8:43 am

    I can imagine what it must be like working in Kenya with narcolepsy. I had a friend who was a missionary/physical therapist from her early seventies until she was almost 90. If there had not been and uprising she might have stayed there longer. She made a difference in many peoples lives. I am 81 and have had narcolepsy since I was 12 years old. Many of the things I did I would not have tried if I had realized how serious it was. I was almost 30 before I went to a doctor who put a name to my sleepiness.

  1973. Jennifer Slodysko on August 27, 2015 at 6:34 pm

    “But despite the almost indescribable change in my life – managed by a powerful medication regimen and strict sleep schedule – I still remain chained – albeit loosely – to a profound and paralyzing fear that I will lose everything again.”

    This is such an amazing quote! It says so much! I am acutely aware of the things I’m able to do day to day that I wasn’t able to do prior to being diagnosed with narcolepsy. Because the possibility of returning to a disabled and debilitating state is very real, I am extremely grateful for even the smallest of victories while learning to mange my illnes.

    Thank you for sharing your story, and congratulations to you for following your heart!

  1974. Heather on August 28, 2015 at 9:56 am

    This one bought tears to my eyes Julie. Can you thank your work place and colleagues on behalf of me too, for being so far-sighted, so kind and so accommodating. They sound like an amazing, truly amazing, bunch of people. And I’m so grateful to you for giving every thing you’ve got to the Narcolepsy community – you’re a legend!!!!!! Big love. Heather & my family.

  1975. Mia on August 28, 2015 at 3:24 pm

    I never met Michelle but was in contact with her and lost contact with her. I think that I really want to do this NARCOLEPSY NOT ALONE with my friends and family, because without them I don’t know what I would

  1976. Jaccinda on August 29, 2015 at 11:55 pm

    How do I deal with frustration/anger at the medical community for mis-diagnosing my narcolepsy for over 30 years? Since age 13, I realized something was wrong with me. I didn’t have the energy of other kids my age, and always felt drained. Since my parents were going thru a messy divorce at the time, my lack of energy was attributed to depression. For 32 years mentioned my extreme tiredness. Most of the doctors suggested I get 8 hours of sleep every night and exercise more. Yeah, right, when I hardly have the energy to get out of bed and do the very basics of life. Other doctors would check my thyroid and iron levels, and look at me like it was all in my head,when the results came back in the normal range. Now at age 45, I finally have the diagnosis, thanks to a DO, who took me seriously, and ordered the right testing. Inhave scientific proof on paper in a format that the medical community rsspects. But now my life is half over, and I feel like I’ve never really lived, just sleep-walked thru life. I’m thankful for the diagnosis and the overall good health that I do have, but still hold frustration and anger regarding the doctors who blew me off, and the decades of living in a fog.

    • Shannon O'Dea on June 10, 2016 at 10:44 pm

      I too thought of calling that doctor who – when I handed a peice of paper detailing all my symptoms (sleep paralysis, sleep hallucinations auditory and visual, always no energy and tired, sleeping all the time) he skimmed it over without reading it and said “oh yeah classic depression.” I was so angry that day. If he had read it maybe it could have clicked to him. I wasn’t having catelpexy at the time. The cateplexy is what got me diagnosed because by that time I suspected I had it. I didn’t even realize I had most of the symptoms 5 years ago. I too feel like I’ve wasted a lot of my life. I’m hitting 35 next year and everyone else in my family is so successful and here I am living with relatives.

      My family doesn’t understand either. I JUST got on medicine that seems to help give me energy yesterday. I went from couldn’t get out of bed to packing half of my room. I thought I did a real great job that day and was proud of what (little) I accomplished because it was a lot more than I had been able to do before.

      My brother today said – I’ve been cleaning all day you’ve been sleeping all week and packed for two hours yesterday. He doesn’t understand. I asked him to read about it – he says he’s too busy – no offense. I feel like leaving town and just being alone honestly.

  1977. Robyn Madgwick on September 3, 2015 at 11:30 pm

    This is one person’s account of her life living with Narcolepsy.
    I live with Narcolepsy. It is debilitating and, as it is so far not widely known to exist, can be seen as laziness or depression. I did not have it diagnosed until after marrying Allan .. when he encouraged me to seek an answer for the non-ability to stay awake when I was not tired, and not being able to drive anywhere as I kept becoming overcome with sleepiness sometimes 5 minutes into a trip or even to drive around the corner. Falling asleep while speaking with someone, not being able to focus on what they were saying. Making it necessary to apologize for being so rude when it happened.
    On my first visit to my Neurologist in Rooty Hill Sydney he asked me what I thought was a strange question, until it dawned on me that it actually made sense! “Do you feel yourself becoming sleepy during the day .. when you’re not tired?” Until then I had thought that these two things were the same thing. With Narcolepsy .. not so! And so I was awakened .. so to speak .. to the reality of Narcolepsy. Two lab sleep tests later the diagnosis was confirmed.
    Narcolepsy cannot be cured .. only the symptoms can be treated. My Dad struggles with similar symptoms .. unfortunately he is not able to travel to Sydney at least 3 times for help. The local Neurologist is not knowledgeable of the illness, nor has any access to sleep labs. So he may never know if life could be brighter for him. Robyn Madgwick​

  1978. Amy on September 7, 2015 at 4:10 pm

    Wow you are an inspiration. Thank you for sharing this story

  1979. Laurie on September 7, 2015 at 6:14 pm

    Thank you so much for sharing this, and for being open with the dark side of things too. It means a lot more to me (and I would imagine to others) knowing that you are not only an advocate and writer and success story, but also a real person with narcolepsy who has to face the fact that it’s not something we can overcome with will power.
    I am 29 and work in a children’s hospital, and I was diagnosed a year and a half ago after going on medical leave for “depression” (major symptom: falling asleep in the bathroom between each patient I saw). Since I returned to work, it’s been an ongoing struggle. I have a “nap room” too (really two chairs in a storage closet), but I have the hardest time using it. Instead I find myself fighting sleep and becoming more and more inefficient, even when I know exactly what I need. There is still a small part of me that still believes that narcolepsy is a fancy name for lazy… if my coworkers don’t need to nap, why should I? My boss has been on board with the accommodations, but at the end of the day I still have to complete exactly as much work as everyone else. I haven’t figured out yet if that is possible.
    Your story is giving me hope that one day soon I’ll find the courage to start taking a nap at work EVERY DAY. And maybe I’ll give an in-service to my coworkers. And down the road, maybe I’ll even run another marathon or two 🙂 Thank you!

  1980. Anne Nduati on September 8, 2015 at 6:48 pm

    Waoh thanks for sharing your story.its good that you are in Kenya my country and you have seen the challenges that we have on medication and the way the society handle people living with narcolepsy.
    Im a single mum of a 14 year old daughter living with narcolepsy which she was diagnosed when she was 6 years and she was in a very bad condition of even wanting to commit suicide due to stigmatization and its when i started the narcolepsy awareness in Kenya where by i do school awareness,media and society awareness and still looking for sponsors to push us ahead.
    I press on to see that we raise this awareness the whole of Kenya and Africa where it is considered to be witchcraft or curse and most of them are isolated in the society.
    We now have a team of 78 people PLWN and still reaching more.
    You are not alone,never feel alone,we welcome you to Narcolepsy Kenya cz we are one family!

  1981. Jada on September 9, 2015 at 12:41 am

    Will there be a scholarship for the senior class of 2016?

  1982. Josh on September 11, 2015 at 9:41 pm

    Thanks Julie for the encouraging post! It comes at a great time for me, having been recently diagnosed and still single. Adding narcolepsy to the list of my other ailments has definitely added more concern about dating and who will be receptive and supportive. Friends & family have spoken similar words to me, but it makes a huge difference when those same words come from someone who’s actually walked the same path.

    Glad I found your site, and I’m looking forward to reading more of your insights!

  1983. Cathryn on September 14, 2015 at 10:48 pm

    Thank you! I am 46, and for the first time i can say, “I am NOT lazy, dopy, going mad, stupid etc etc etc. Now i can step forward, with my head up..knowing for sure that i am NOT lazy, going mad, stupid etc. I am so releaved and not alone. Thank you

  1984. Elizabeth on September 18, 2015 at 1:34 am

    Thanks to everyone for sharing. Everyone’s stories have made me feel better. I just found out that I am 5 weeks pregnant. I was diagnosed with narcolepsy and debilitating ADHD in 2005 and have pretty much been on Adderall xr since then with the exception of trying a few other medicines that either did not work at all or I had severe side effects from. I came off of it about 2 years ago for 2 weeks to do a repeat sleep study with a new doctor. The first week I went through what I guess would have been withdrawal symptoms from being on it for so long. I was in a coma like state, sweats, chills, nausea, loss of appetite- unable to eat, and my oh so forgotten narcolepsy symptoms- sleeping uncontrollably for days- I was only conscious for a total of 1-3 hours a day. By the end of the 2 weeks I had started to feel slightly better in some ways, but my narcolepsy seemed worse. I think because for so many years I had not had to fight as hard, going without the help from medicine made things seem so much worse. And knowing that I could take medicine and be more like a “normal” person didn’t help. I also have other health problems and was told I would probably never be able to have children- which I was completely ok with. In April this year- with what I had been told was a less than 1% chance- I found out I was 4 weeks pregnant- but miscarried within a few days. During that time any doctor I spoke with had different advice regarding narcolepsy, taking Adderall, and pregnancy. Or they had no advice and kept passing me off on someone else. Since I miscarried before I made a choice on medicine, and I thought it would never happen again, I haven’t given any more thought to it. BUT here I sit having just found out again and trying to call doctors and getting the same run around. I have tried to research and still cannot decide what is best. I’m afraid if I quit cold turkey that if I have symptoms like before when I wasn’t pregnant that it will cause more harm to the baby or even another miscarriage. On the other hand I’m terrified of the effects that continuing my medicine might have. I truly cannot decide which decision is best! Has anyone been through anything similar with Adderall or does anyone have any advice?

  1985. Kelly Bell on September 19, 2015 at 1:13 am

    Once again, bravo. And thank you.

    • julie on September 19, 2015 at 10:19 pm

      Thank you so much, Kelly!

  1986. Kathy Flygare on September 19, 2015 at 11:44 am

    I’ve known Julie all these years and I am so proud of how she has transformed through her advocacy for not only her disease but those other diseases that are misunderstood and under researched. Brilliance isn’t about how smart you are but more about how you use it. Bravo. Love you. Kath.

    • julie on September 19, 2015 at 10:20 pm

      Kathy, It’s been a long journey for sure and I appreciate your support and care through it all! Love, Julie

  1987. TonyS on September 19, 2015 at 1:03 pm

    My sleep doc is fixated on my problem being an out-of-sync sleep cycle because I don’t exactly meet some norm she has for EDS — like I’m jet-lagged. I’ve spent years traveling internationally; what I have is not jet-lag. When I’m really sleepy, the only thing I’ve found to give a period of real clarity is 5Hour Energy. Doctors look at the ingredients and say, ‘it must be the caffeine’. It isn’t! Caffeine even very strong is very different.

    Julie, keep up your excellent work/God bless you!

  1988. Gail Pean on September 19, 2015 at 6:25 pm

    Julie,
    Thank you for sharing your personal journey from denial to acceptance and celebration of life with a chronic illness. I have seen your transformation and witnessed your growing pains, joy and sadness. You have suffered great personal losses emotionally and financially but always had faith in your convictions to spread knowledge and support to others. You are truly an angel on earth. I am so proud to call you my friend. Congrats on all you do and will do for the world spreading beauty and knowledge..

    • julie on September 19, 2015 at 10:21 pm

      Thank you, Gail! Your comments means the world to me, as we’ve supported each other through so much of the tough stuff and beautiful times of life. I’m so thankful for your friendship.

  1989. Dee Daud on September 19, 2015 at 7:21 pm

    Hi Julie. I love this page you have put together. In short it is also about my life. Like you I was trying to hide it for yours, and like you, in the end I started talking about it. Life is so much better when the people around you understand your narcolepsy. Well done mate and all the best.

    P.S. I always said you were an Angel, now I can see you with wings! 🙂

    • julie on September 19, 2015 at 10:23 pm

      Dee, thank you so much for your on-going support in the narcolepsy community. Having fellow advocates like you helping to spread the word to the world makes this journey so much more rewarding and meaningful. We are not alone! Thank you for raising your voice too. Big smiles and many thanks, Julie

  1990. jason on September 22, 2015 at 2:14 pm

    Julie.
    Thank you soo much for your.post/ story above. Wow what courage it must of taken too write. This. You mention word hyperdrive. Whilst I understand exacly what mean by that. And that is how you felt. My goodness you are soo no a hyperactive. You are doing the best you can. Too live with a very difficult illness. Which most people can’t even begin too imagine what it’s like too life with NARCOLEPSY. I have other chronic illness too. Dealing with them is simple compared too my narcolepsy. In zombie mode my thinking clouds my PRE FRONTAL CORTEX thinking part of my brain goes too sleep!!!. I can’t /don’t always remember what helps. Your struggles I relate too. Your honesty esp in view of your work in promoting personal well being. Is extraordinary. And shows your inner strength. . I.ve read wide awake dreaming it was brilliant. Thanks. Complamantsxx I know ugh!!!!! We can all learn from any experience we have Julie. When this happens that exeriance was not in vain xx

  1991. Roy Faverty on September 27, 2015 at 9:05 pm

    Flygare’s account was interesting in that her descriptions of the symptom of her narcolepsy were in many ways parallel to mine, however, even though I genetically test positive for narcolepsy/cataplexy I have as yet to be diagnosed with narcolepsy as I also have a very long circadian cycle that seems to require 15-20 hours 0f sleep to get a refreshed awakening only to last 15 hours when I am awake or not so awake. Her cataplexy seemed to evolve faster in a severe form and full collapses, mine seem to come on when I exercising and having positive attitude or in the middle of a stressful conversation. As a result I would suddenly fly off the treadmill or collapse when feeling I had done well and decide to step off the tread mill or dismount from the bike or loose my orientation as I step through a doorway. Also, when the weather took a severe change such as a deep wet trough moving over San Francisco ( where at an import meeting at the EPA I found myself barely able to stand, shaking so severely my whole body become drenched as I tried get my muscles in my knees and hips function, embarrassingly I had to turn the meeting over to one of our other team members and I slept, these guys got me back to the hotel where I stayed and extra night until the storm passed and I could stand without falling). Eventually, any small weather event made me unstable and my brain demanded that I sleep or fall. Other issues were falling asleep in meetings where I had huge management responsibility, falling asleep on the freeway, needing naps incrementally through the day so I could be lucid. My writing skills and oral communications diminished the more I fought the sudden collapse into sleep (eventually I got to the point I was exhausted I could not write anything that made any sense much of the time).

    Flygare’s account of the onset of narcolepsy was rapid, seemingly out of the blue, for me these symptoms appeared rather slowly and sporadically making it difficult to realize something was amiss. I am 69 years of age and Flygare’s account is the first of I have read that addresses the condition from a personal experience and it helped me to read it and realize these symptoms are shared by others and were not imaginary. Today I address the problem with modafinil 700mg each morning, as staying fully awake and alert suppresses most symptoms such as cataplexy, but a strong weather change, regardless of how much modafinil I have ingested, causes descent into prolonged sleep and loss of muscle tone, and all the other symptoms emerge to the surface. After working with the University of Colorado Medical School and seven days at Mayo Clinic plus years of working with good MD’s here in Boulder Colorado I still don’t have a decent diagnosis, but may be getting closer thanks to Flygare memoir, well anyway I hope so. The book offers a lot of hope, leaving no room for criticism.

  1992. Heather on September 28, 2015 at 11:04 am

    Awww…thank you Julie, yet again, for your amazing campaigning and diligence with raising awareness of Narcolepsy on behalf of us all. I love that Al Jean and the Simpsons have taken your comments into consideration. Definitely Homer needs to join the Narcolepsy Not Alone campaign (and help to get it onto the Ellen show as you had once hoped?!). Best always. Heather

  1993. Katherine mcglynn on September 28, 2015 at 1:27 pm

    AL Jean needs to hire Julie Flygare as a consultant at the very least. Give credit where credit is due, say it in cash, and help Julie continue her good work.

  1994. Chrustianna on September 28, 2015 at 6:45 pm

    Such a perfect description, it’s like you’re describing my life.

  1995. Pam on September 29, 2015 at 3:32 pm

    I was wondering if anyone could give me information about accommodations for children of Narcoleptic. I currently have accommodations for myself as I attend school online and they have helped tremendously. My main issue right now is getting myself awake on time to get my son to school. He is a GREAT sleeper, and does not wake up to any alarms (so far). I sleep through all of mine, and some days I wake up an hour after he is to be at school and he is still sleeping. I am sure there are other who have had this problem. Before my husband moved out, he made sure we were up for school, etc. Now as a single mom, I do not know what to do. Is there any way that his tardiness or missed days can be looked at differently than the student of someone who does not have N?

    • Bailey on October 22, 2015 at 5:03 pm

      I need some advice. I fell asleep, had a micro sleep episode, during a nursing midterm which caused me to fail it. I’ve only had this happen one other time during my nursing school career, but when I brought the issue to my instructors and dean of nursing, they were less than helpful. It became that I “allegedly” fell asleep and was I even safe to be in the clinical (hospital) environment? Since they weren’t sure if I was they made me miss clinical until my doctor wrote a note saying I was not a danger to anyone or myself. Might I add the fact that I have narcolepsy is documented in my file. So same problem different instructors, do I even bother trying to fight it?

    • Natasha on December 12, 2015 at 2:45 am

      I was also wondering about accommodations for children of narcoleptics. I, like Pam, am also a student (and hoping to be accepted to medical school). So far, my school, including the professors, has been great about providing accommodations. This is huge for me, as I never would have imagined being able to even go to college (much less entertain the idea of becoming a doctor) before I was finally diagnosed! My daughters’ school, however, has not been understanding of my condition and its limitations, at all. Just today, I received letters for both of my girls regarding excessive tardies. All except a couple of times that they have been late, it is less than 30 minutes, and it is almost always 5 minutes or less. Apparently, all that matters is that it is another tardy on the books. Two and a half years ago, they threatened to hold my older daughter back in first grade because of tardies and absences (even though she was at a 3rd grade math level and 5th grade reading level at the time). In the last couple of years we were fortunate enough to be able to hire nannies to help with this, but aside from the high cost, it was difficult to find and/or keep good help. Talking with the attendance secretary has gotten me nowhere, so I was thinking of going in to speak with the principal. I thought it would be good to find some literature about such accommodations, but have been unsuccessful. Of course, the education of my children is my primary concern, but I am also tired of being treated like I am a bad parent. I feel as though the faculty and staff talk about me behind my back, and worry that my girls’ teachers may treat them differently or have unfavorable perceptions of them because of my inability to be punctual. Please help. Any advice or information would be greatly appreciated.

      P.S. Sorry for the long post! Thank you to any and all that took the time to read it.

  1996. Ann Sciabarrasi on September 29, 2015 at 4:26 pm

    I just knew in my gut that you would be there standing up for all us. Thank you for all you do!

  1997. Sharon Cameron on September 30, 2015 at 3:41 am

    Julie, Thank you for your bravery and optimism which helps people like Me.
    I have had my final sleep study to diagnose narcolepsy once and for all and I’m feeling optimism for the first time in 20 years. I have been in the denial stage you spoke about since my 7 year old started school. Other parents ask when I’m returning to work, or why don’t I help out at school more often if I’m not working, or why don’t I just go on that excursion. Oh I just want to concentrate my time with my youngest until he starts school I would say. Well this year he started school and I finally had to start admitting to people the truth about me, because on the outside I look perfectly healthy and normal (I call it my party trick, whenever I’ve had an unscheduled trip to hospital I invariably run into someone I haven’t seen in ages and they tell me how well I’m looking) but now that I’m about to cross this final frontier I have been telling people the truth, My truth, that I have narcolepsy with cataplexy and you know what? The response has not been judgmental or dismissive as I’d feared but supportive and almost congratulatory.
    Im calling this my second birthday because for the first time since I was 12 I’m no longer living in fear of doing something different or unscheduled just in case I have one of my moments, I’m embracing it and am about to start my dream job in pets as therapy and instead of being scared, I can’t wait!
    Sharon

  1998. Alicia on October 11, 2015 at 1:56 pm

    Julie —

    You are such a passionate, engaged advocate. When I had the opportunity to meet you and hear you speak at the ePatient summit, I just knew you had to go to #MedX. I’m so glad you had an excellent experience at the conference. #MedX indeed changes and recharges many advocates – together, we are an amazingly powerful force! You will never be on the outside of a healthcare conversation ever again. You are front and center! We will learn so much from watching your advocacy journey – you’ve taught me so much. Thank you for sharing your story and speaking up! ROCK ON !! Alicia

    • julie on October 12, 2015 at 5:10 am

      Thank you thank you thank you, sweet Alicia! Your kindness and support has meant so much to me, especially coming from YOU, an eloquent and powerful voice in the ePatient community! Always gratefully yours, Julie

  1999. Casey on October 12, 2015 at 5:05 am

    How does someone get involved in something like this? This sounds amazing!

    • julie on October 12, 2015 at 5:09 am

      Casey – they have an application process every year. It usually gets announced in the fall, so I’d check out Stanford Medicine X’s website and look for announcements on their FB page, etc. It is an AMAZING conference. I highly recommend it. 🙂

  2000. Rawdah on October 14, 2015 at 6:06 pm

    Hello thank you so much for the article I’ve been looking for some help for 5 years now I think I have this illness. I’ve lost so many jobs and had to drop out of school. I am looking for a doctor that can help me.

  2001. Audrey on October 16, 2015 at 2:08 am

    This is perfect timing, as I spent a good part of my therapy session today discussing my difficulty accepting my limitations. Negative self talk is a major demon. Thank you for sharing your tips – I will definitely employ some right now!

  2002. Alexis on October 16, 2015 at 3:04 pm

    Wow. Being diagnosed with narcolepsy 5 years ago totally changed my life too. For the better. My diagnosis came as such a relief to me. It was good news for me. After 13 years of constantly feeling so sleepy all the time that I often felt too tired to be bothered doing things & so often I didn’t. Over time my family & friends became more sick of my lack of energy & enthusiasm to do things so my relationships suffered. The doctors I frequently complained to about my sleepiness & lethargy kept telling me maybe I had a virus or a touch of chronic fatigue or was simply depressed, which at times I was also often told by doctors that there was nothing wrong with me. After hearing that enough times I finally started to believe what other people in my life did, in that I had become a lazy, reliant, going nowhere worthless person…. So when I heard the words “you have narcolepsy” it bought tears of happiness to my eyes. What I had & what I’d be going through for years was real. To know that it hadn’t been all in my head & that I wasn’t just a lazy, slacker who was so messed up that I couldn’t even pull myself out of it & get on with life. Knowing that there was a medical reason for it all changed my whole perception of myself & I no longer felt like the worthless, lazy person that id started to believe I was.
    Not to mention, when my family & friends found out that there was a medical problem that was causing me to come across as the laziest person they knew. Meant my relationships with them all improved.
    Plus being diagnosed meant that I no longer had to suffer through the symptoms as they could begin to be treated & managed.
    My Sleep Medicine doctor started me on Ritalin & I’ve never looked back. They help. I’ll never be cured, at least not by current medical science, but with medication & a few changes in lifestyle my diagnosis gave me my life back, both physically & mentally.
    Sure, it’s never good to have an illness, especially one like narcolepsy that can’t be cured & like anyone else I would never choose to be sick. Id rather know I had an illness than have it & not know about it.
    I hope you’re able to see the positives a bit better now & that you too are better now that you can be helped by medication.
    Narcolepsy is not fun & it’ll continue to effect my life & maybe even stop me from doing some things. It’s not pleasant, but at the same time there’s far, far worse illnesses out there that cause people an lot more suffering than anything I go through. Narcolepsy is not deadly, it’s not going to shorten my life, it doesn’t cause the body constant physical pain or other awful things like that. So who am I to complain really when there are countless other people out there who have illnesses that are so much worse & so much more serious.
    That is how I’ve dealt with my narcolepsy diagnosis.

  2003. Kinda on October 17, 2015 at 2:09 am

    I’m thrilled to find this site! Thanks for the awesome work that you are doing here. I have never met another person with narcolepsy and did not know how important that was to me until I saw the picture gallery. Thank you!

  2004. Laura on October 23, 2015 at 4:46 pm

    Julie, you’re a superstar! Thanks for representing the sleep disorders community, and for making advocacy work sound so amazingly empowering. Your passion for this work really shines through and is absolutely inspiring!

    • julie on October 23, 2015 at 11:48 pm

      Thank you so much, Laura!

  2005. Laura on October 24, 2015 at 8:40 am

    Fantastic! “You can prescribe me.” What a great line. I’ve only met one other person with narcolepsy/IH in person, but it’s been great to find a supportive community virtually. So good to not be alone!

    • julie on October 24, 2015 at 11:42 pm

      Thank you, Laura!! Our international community is now so connected thanks to the internet. This is so empowering! 🙂

  2006. Nicole Wilson on October 25, 2015 at 1:37 am

    Very cool, Julie! I know the fear of telling anyone about why I need to take naps during the day and why I really can’t do activities/meet-ups in the p.m. hours. Thank you for sharing — it is a relief that someone else had the courage to come forward and speak about the truth behind this invisible disorder. I know so many people deal with much more severe health complications, and having to be silent because soooo many people — even basic family health practitioners do not believe there is a real disorder behind narcolepsy. I’d like to hear more about women who want to have families, work, and cannot function without use of medications like Modafinil. I was diagnosed almost 20 years ago (June 17, 1996) and the pregnancy/breast-feeding thing didn’t mean much then, but now it does and there is very little research around this topic. Lots of things I identify with you on and I look forward to reading the book! Thank you much for putting yourself forward for US 🙂
    Nicole Wilson

  2007. John Lynn on October 25, 2015 at 3:05 am

    Beautifully written. I could feel like I was there with you. Please let me know when the video of your talk is available. It’s the cherry I was waiting for on top.

  2008. Beth Kosiewicz on October 25, 2015 at 4:31 pm

    Julie…Wow…another amazing leap forward for Narcolepsy Awareness!!!
    Thank You for your passion, your honesty in sharing your very personal experiences with N and your determination to let others see the Real Side of Narcolepsy!
    Thank you for all of your hard work, bravery, and dedication!!!
    Hopefully if we all spread these messages then perceptions, understanding, and treatments will change for the better:)
    All our best to you Julie on a job WellDone:)
    Beth and Jenny K.

  2009. laura j. evert on October 25, 2015 at 7:38 pm

    wow, wow, wow, julie! brought tears to my eyes in how familiar your words are to myself + other people with narcolepsy i have met throughout the years. we have been discussing this lately in our local support group… how beneficial it would be to have a social worker +/or psychologist assigned to us at diagnosis to help in successfully navigating life with a chronic illness. meeta goswami, phd has known this all along (www.narcolepsyinstitute.org). with your help, i do hope more medical professionals take notice! and, as always, thank you for speaking out!

  2010. Darlene on November 2, 2015 at 7:47 pm

    Hi. I just wanted to thank you for this article. I am a Narcoleptic who is attending college at 53 years old. I thought I could handle Narcolepsy and college but I began to struggle. I went to the Office for Students with Disabilities for help. They told me to get medical proof of my Narcolepsy, and a doctor’s note was good enough for that. But they also told me to get as much info as I can to give them and my profs to help them understand my needs. During that research I stumbled across this page. Your personal experience mirrored mine (in fact when I was a kid my parents and I bragged about the fact that I could stay awake at night longer than anyone else and that all nighters were effortless to me, but meanwhile the day was a totally different story. I couldn’t stay awake in school at all. And before diagnosis my sleep paralysis was terrifying to me). Anyway, your story was part of the info that I handed over to help them to know how to help me. The accommodations they made for my disability were partly because of your story. I just thought you’d be happy to know that some good came from your bad.

  2011. Jeremy Stenmark on November 4, 2015 at 3:51 am

    Isn’t it frustrating that 99% of the time, narcolepsy is never included in the conversations as a sleep disorder? That was probably a run on sentence!
    I began feeling symptoms around twelve years of age. Known to my grandmother as the sleepiest kid she knew. Any chance I had I was asleep. I stayed at her house a lot during summers.
    Finally diagnosed at eighteen after getting a full time job with health insurance. I’m thirty seven now. It has been a struggle as you know. MANY times being called lazy. Which hurt, but I wasn’t sure how to handle it.
    I don’t research narcolepsy at all, but I did tonight and came across your blog post website thingy. Mostly because not much has changed, and I have a pretty good handle on it.
    I am medicated, and I have a class a cdl ( I drive trucks ). I have been on provigil daily for eighteen years now. 200mg. I did a sleep study before getting on provigil and I was told I fall into a deep sleep in under one minute. That’s deep REM.
    I also did a test with the meds. A latency test and failed each one. While on the meds!
    Not sure why tonight I feel the need to off load this info to you. It feels long winded. Maybe it’s because my entire family is in bed at 10:30 and I’m up alone doing chores.
    I find that less sleep is better. That has to be a narcolepsy trick!
    If you need an eastcoast, mid Atlantic spokesperson to help spread the word, I can try. Not too sure I can do more than you have done to date.
    I guess I reached out to you because I must feel like I need some purpose in my life and narcolepsy is what has controlled my life for a long time. It’s what I know. And my life isn’t that bad. I just realized how two sentences ago sounded.

    Thanks for reading and allowing me to randomly tell a semi stranger something.
    Laters
    Jer

  2012. Ines Illgen on November 5, 2015 at 5:08 pm

    Have not seen any posts by “seniors” and I don’t mean high school or college. I’m 68 yrs old and was finally diagnosed with hypersomnia around the age of 60 after my primary care doc referred me to a sleep clinic. I was prescribed Provigil and because of the expense I opted to get only a week’s supply instead of one month. On the third day I developed cataplexy. Having been a registered nurse for 40 yrs I recognized it immediately and upon recovery after a few hours reported it to my docs, pharmacist and manufacturer. I’d been asking my doc for years to let me try Adderall, but he refused because of my hypertension. I eventually had to take control of an increasingly intolerable situation. I was falling asleep at work. My coworkers were extremely supportive and would let me “nap” in an empty room as long as possible. I’d immediately go into deep REM sleep. My now adult kids had been on Adderall for ADD so I took 5 mg and kept a close eye on my BP. Eventually I got positive results with 20 mg and no increase in blood pressure. I informed doc. He, of course, disapproved but did write me a script. I now take 20 mg upon awakening and 10 in the afternoon. I hesitate to send this post because I do not want to suggest this is a safe thing for anyone to do. In retrospect I should have gone back to the sleep clinic physician instead of my primary care doc. But he was no longer there and the clinic was in transition, so I used that as an excuse. I now am scheduled for another study because based on her review of the previous studies the new clinician tells me I have sleep apnea and narcolepsy. I’ve never again had an episode of cataplexy since stopping the Provigil. I am now retired and am living in the continuing care retirement village where I once worked. Moving here is a slow moving drawn out process because of many other medical issues as well as my sleep disorder, whatever its name. I’m happy to have found the magazine article and the many posts because like so many others I’ve never met another narcoleptic.

  2013. Becky Young on November 10, 2015 at 2:41 pm

    Julie ~
    What an amazing and inspirational story! Thank you for spotlighting Trinity. You are both living the dream. <3

  2014. Susan on November 11, 2015 at 4:15 pm

    Wonderful speech!!! Really made me feel like I understood the illness better. Thank you.

  2015. Tove Maren on December 14, 2015 at 2:51 am

    Our journeys have so many parallels – it is scary. I also lost my dad – and I always thought he had narcolepsy too – so he always understood me.
    Thank you for all that you do for our community of sleepy heads.

  2016. Estella Stevens on December 14, 2015 at 11:03 am

    I suffer from Narcolepsy/Cataplexy and have done for many years. I do not take any medication other than medication receieved from the Holy Spirit. I follow no religion or practice any but i am fully aware that although this condition attacks you in the flesh The Natural yet the battle is in the Spiritual. As i have begun to develop my relationship with God my attacks have subsided. Faith is an incredible thing and is not easy but with endurance and perseverence God will carry you through. Prayer is imperitive to win the battle with this condition. Dont knock it believe it try it. With God nothing is impossible I can not save anyone only the creator can do so. To be saved or not to be saved is an individual choice but not to be sniffed at.

  2017. Karen Allyn on December 14, 2015 at 6:39 pm

    MAZEL MAZEL to an AMAZING woman who made narcolepsy a household word we can actually understand! Thanks for all you do, Julie–keep up the good work!
    Hugs and much love-
    Your forever admirer–
    FORWARD MOTION

  2018. Dorothylou Sands on December 16, 2015 at 7:10 am

    I do not know if I have told you before or not, but I loaned your book to my Rheumatologist. He said he learned so much. I am thinking of doing the same thing to my primary care doctor who made a rather stupid remark about narcolepsy when I asked him a question about my pills.

  2019. Nicole Monte on December 29, 2015 at 10:07 pm

    I go through the exact same things you go through when I wake up only I am unable to take real naps because I have four children ages 14,12,8, and 2. So when I fall asleep its uncontrollably for short periods of time. Sometimes I will go for weeks at a time where I am falling asleep every 15-20 min and nothing I do keeps me awake. I am usually awoken by someone and when ever I get awoke I get this horrible startled feeling. If my fiancé is home though he will just let me be and sleep.
    My biggest problem is my neurologist is convinced I have narcolepsy which is causing issues for me because I am severely epileptic, I have seizures near daily. My neurologist is convinced of the narcolepsy and has even witnessed it first hand but is unable to prescribe me any medication for because my insurance (I am on state aid so I have state health insurance ) won’t cover it without an official diagnosis by having a sleep study done. Yet they keep denying me to have the sleep study done!!
    So I am stuck and suffering. I feel like my life is just slipping away from me and I am missing so much of my children’s lives.

  2020. Barbara on January 5, 2016 at 1:40 am

    I sleep walk and I would like to exchange ideas and experiences with people who sleep walk.

  2021. Sara on January 5, 2016 at 5:19 pm

    Hello,

    I have narcolepsy+cataplexy and I am 5 months pregnant, and so worried about giving birth, as a narcoleptic im not sure how anesthesia or epidural might react to my neevous system..i am wondering what were your choice of delivery? With epidural, c sec or natural?

    • Paula on March 2, 2016 at 4:53 pm

      Hi Sara,

      No two women are the same, and no two narcoleptics are the same. What triggers your cataplexy? Is it excitement, pain or laughter? In my case it is anger, which makes tiffs with my husband frustrating. If you experience a cataplectic attack during natural childbirth, are you comfortable in your care team’s ability to manage the situation in accordance with your wishes and the best needs of the child, if need be? If not, can you reach that level of comfort with additional conversations, or do you need to call in a new team-member?

      Yes, if your cataplexy starts to interfere with the birthing process, an emergency C-section might be called for. I stress the word “might” as it is not a certainty. However, hospitals may not be overwhelmed with narcoleptic moms, but they are well-practised in the art of the emergency C-section. Obviously, this is a good argument for utilizing a hospital over a separate birthing center, but cataplexy, in itself, is not usually a solid argument against attempting a natural or assisted birth if this is your first pregnancy. However, your personal comfort level and sanity have to factor in. Only you know your own body and triggers. If a planned C-section will put you at far more ease than a natural birth, then there is your answer.

      I myself am pregnant with my second and am electing to have a planned C-section. I had an emergency C-section the first time after a week of on again-off again labor. I was still only classified as having idiopathic hypersomnia the first time around as my sleep architecture hadn’t degraded fully into Narcolepsy yet. My sleep issues had no bearing on my outcome nor do they weigh into my present decision not to attempt a VBAC. Several weeks after the birth of my first child, a friend of mine, who also has narcolepsy, delivered a healthy baby girl naturally and with no complications.

      Don’t let the online mommy guilt folks dictate your decisions on birth, breastfeeding and child-rearing. We have enough fatigue already. Attempting to live up to their standards is an exhausting mistake I made the first time around. You saw that I was in labor a week, right? I was a stubborn dummy. Births have a tendency to be like weddings and birthday parties. We want certain things from them and go in with certain expectations. Yet, if we are too married to those expectations, we will miss out on the true beauty of the moment. I practically laminated the copies of my birth plan, and I had what my doctor called “the most traumatic birth experience” she had ever witnessed. What birth plan would make you feel most comfortable? Write it out and then prepare to be flexible. And since hospitals are afraid of litigation, put on your birth plan that a healthy child is your goal, and if one of your care providers feels that the plan is no longer the best means of achieving that goal, they should feel free to address that concern.

      My anesthesia was delivered via the spinal tap they did for my epidural. (Mommy judges, I was in labor a week, you can shut-up now) I puked in my doctor’s face immediately after birth and then passed out for hours. I think my reactions were more due to prolonged labor than anesthesia. I have a frequent surgery punch card, and I can say I’m usually groggy and little nauseous afterwards. If the anesthesiologist is kind enough to give me a dramamine patch for behind my ear, it helps immensely. Even if you choose a natural birth, talk to your doctor about anesthesia. She knows the hospital’s procedures and the anesthesiologists best. If an emergency C-section is required, she will be your best educator and advocate.

      Congratulations!

    • Danielle on June 29, 2016 at 6:02 pm

      Hi Sara,

      You may consider a water birth if you are worried about cataplexy. They bring in a big blow-up tub and set it up at your house, or some hospital/birth centers have a large tub for you to use. You can stay in the bath for most of the labor, and your husband or a midwife can hold you up in the water if you have full-body cataplexy in the tub. If you only have lower-body cataplexy it will be easier to be in the tub by yourself, as you can just hang onto the rim. Then you won’t have as much fears about falling and such. 🙂 You can actually give birth to a baby in water – it’s good for them, as they are in a water bubble in your body and used to it.

      I’d go for the natural route, your body will release all kinds of hormones that will make you feel great for a while after the birth.

  2022. Chris on January 6, 2016 at 6:30 am

    I learned a lot from you during our chat. Thanks again for coming on the podcast!

  2023. Wendy oneal on January 18, 2016 at 6:35 pm

    Hi Julie I am interested in starting a sleep walk in my city…would you be able to give me any information on how to get this started
    Thanks,
    Wendy

  2024. Mali Einen on February 13, 2016 at 6:46 pm

    Nap Shame..
    Yes I’ve got it too!
    I’ve now had narcolepsy for over 30 years and still feel that moment of shame in the pit of my stomach when I know I need a nap ..that shame can be so powerful that too often I push the nap out further ..making my self less productive and well..before giving in. Years ago I let that shame prevent me from napping at the expense of my career – thinking that others might judge that I wasn’t pulling my weight. Yet, if I had looked around there are so many people who “waste” so much time in their day (personal phone calls, chit chat in the office, extended break times, primping in the restroom) compared to the time that I allow myself for a nap.

    I’m better now at taking the naps.. but that shame is there every time.. not ashamed that I need the naps ..they are actually “my super power” ..they make me more clear, productive, pleasant.. but shame at what others may think.

    I continue to “work” everyday at giving my self the permission to nap.

    Thank you Julie for your post.. I think if we talk about this more .. perhaps can get better!!

    • julie on February 15, 2016 at 4:10 am

      Mali, I think you hit the nail on the head:

      “Not ashamed that I need the naps … but shame at what others may think.”

      This is it for me too!

  2025. Michael Hennessey on February 13, 2016 at 7:10 pm

    Hi Julie,
    I am 66 with nap shame and empowered.

    By empowered I mean I take my naps everyday even though it embarresses me.
    I hate it when people call and wake me up. They immediately apologize and I have to tell them ” don’t worry about it I am always asleep either upright or laying down.
    Of course there are those people manly family who say ” If you would just push yourself like everyone else, you would not need the naps.” Or it must be nice to take a nap when ever you feel like it..
    I was diagnosed in 1991 after a 3 car pile up. But I have been complaining to doctors since grade school. My parents used to say give Michael a tree, he will climb it and go to sleep in the branches.
    Might be of interest to you. I Narcolepsy/Cataplexy, Central Sleep Apnea and Combat Post Traumatic Stress Disorder. They all originate from the same part of the brain.
    Thank You for your great work.

    A thought you could make a 15 minute power nap available for everyone at work which would cover your nap and probably increase production in the office.

    • julie on February 15, 2016 at 4:15 am

      Michael – this is such a powerful line: “I am 66 with nap shame and empowered. By empowered I mean I take my naps everyday even though it embarrasses me.” Sounds similar to what Mali responded too. This is so great that we are sharing. Sending wakefulness and big smiles your way, Julie

  2026. Dorothylou Sands on February 14, 2016 at 2:47 am

    I never thought about being ashamed when taking a nap. People would ask me how I managed to sleep for 10 or 15 min. They would sleep all afternoon. My embarressement came when people would walk in to my office an find me sleeping. Most people that knew me knew that happened occasionally and once I was awaken I went on as if I had not been asleep. I have slept in church during the sermon for almost 70 years. It is always amazing to me the Sunday’s I stay awake during the entire sermon. I only take a nap if I have to drive some distance. If I get sleepy and haven’t taken a nap I take my medication, but find getting out of the car to get my pills I am awake by the time I take the pill.

    • julie on February 15, 2016 at 4:14 am

      Thank you for sharing your experience, Dorothylou! You’re an amazing woman and role model to me.

  2027. Rachel Bancroft on February 15, 2016 at 3:05 am

    Julie,
    Thanks so much for bringing up this topic. My 12-year-old daughter and I both have narcolepsy. I encourage her to be aware of her needs, advocate for herself and take her essential daily naps.

    Her response about nap shame:
    “I’ve explained narcolepsy to most of my friends, and they’re all pretty supportive of me, but it still feels weird every time I have to take a nap in public.”

    I have become more open about narcolepsy and naps with my family and friends only in the past few years. Partly because I didn’t know what was causing my fatigue and partly because I was so ashamed of needing naps. My family is now supportive of my need to nap, but I always feel some shame when I nap around them because our family takes pride in being hard-working, buck up-and-don’t-complain type of people. My dad still thinks naps are for unproductive and lazy people.
    When I tell my friends about my need to nap, I’m always amazed at how many of them say they are jealous. Especially those that are mothers. There seems to be this underlying competition of who can be the most worn out, the most stressed and the busiest. I usually tell them to just take a nap already. 🙂

    Rachel & Emma

    • julie on February 15, 2016 at 4:13 am

      Thank you so much for sharing your perspectives, Rachel and Emma. It sounds like we are all working through the layers of self-guilt and outside pressures. I’m so glad we are having this discussion! 🙂

  2028. Samuel Andrus on February 18, 2016 at 4:11 am

    I am 17 years old and have been struggling with narcolepsy since the 4th grade. I used to have to go to the school nurse to pop some nuvigil after lunch and I was always so embarrassed about telling people why I had to take medicine. For the first few years after I was diagnosed I could hardly bring myself to tell people that I had narcolepsy. Sometimes I would almost start to cry. Everything was embarrassing about it. I guess it didn’t help that I was only a young boy who was still learning what my narcolepsy was but it still felt so embarrassing to admit that I was different. I didn’t want to be different or feel different.
    As I have matured and learned about how I can best deal with my narcolepsy, much has changed. I now have a class period of the day at school where I take a nap. I have an air mattress and blanket in a secluded quite room where I take a much needed daily nap. Although I still fall asleep in a few of my other classes almost every day, I am able to maintain good grades with the aid of accomadations from the teachers.

    But most importantly: I am completely open and accepting of my narcolepsy. I do not hesitate to tell anyone that I meet about my condition. All of my friends know the details of my narcolepsy. We joke about it often and I really laugh. My friends are fascinated by the stories that I tell them of my lucid dreams and occasional hallucinations. They help and encourage me to stay awake in my classes nudging me when I nod off, and although this is usually futile because I will just fall asleep again, it is valuable support that shows that they care about me. It is still very frustrating when I fall asleep while trying to learn or taking a test, but I no longer shame in taking a needed nap.

  2029. nancy nichols on February 19, 2016 at 8:00 pm

    So pleased to see a woman address her narcolepsy in a strong and positive manner. My Mom is 96 and has had narcolepsy/cataplexy for 80 years and since I am her daughter, in some ways, I have had it too. Military wife, 4 kids, artist and overall amazing person, I never knew how she managed, but she did. I wish she had had the resources available today to help her in her journey!

  2030. Beth on February 27, 2016 at 6:34 pm

    Hi, Julie,

    I don’t have narcolepsy, but our situations are somewhat similar. I have a Circadian Rhythm Disorder (CRD) and can’t be trusted to wake up in time for (morning) appointments. I’m often either late or I sleep clear through. I’m always tired, but it’s better now, after retirement, as my “sleep debt” is lessened.

    The biggest difference between before and after diagnosis is having learned that I am NOT ALONE. Learning that there is such a disorder and “meeting” hundreds of others via the Internet has changed my life, though I’m not entirely rid of the guilt and shame.

    Many people in my life TRY to understand and accept. It’s usually a bit stilted with some doubt remaining. My remarkable dentist truly accepts; his office calls me an hour and a half before appointments and never belittles. Why can’t everyone be like them?

    We have an organization now, Circadian Sleep Disorders Network ( csd-n.org ), but haven’t (yet) managed to spread the word as you have done. You are an inspiration! Thank you.

  2031. Jennifer on March 1, 2016 at 3:31 am

    I’m going to have to bookmark this site – I’ve been going to a sleep doctor for about 14 months now, and after that long of me insisting I’m abnormally tired, only to be repeatedly informed that because I’m a parent, a teacher, and a writer, of course I’m tired…I’m finally receiving a second sleep study about a week from now, this time to confirm or deny a diagnosis of narcolepsy.

    When my sleep doctor first suggested the idea to me, I of course immediately considered the Hollywood idea of narcolepsy (though my mental health counselor husband insisted I PLEASE read up on it, as he was convinced that was my issue). While I initially rejected the idea, my doctor handed me a pamphlet, stating: “I’m not saying with 100% certainty you have this, but I’m saying you need to know everything this pamphlet says.” So, I read the darn thing, and…yeah. All these elements of my sleep that I thought everyone experienced, well…who knew? I thought EVERYONE started dreaming before falling asleep. I thought EVERYONE had what were clearly visual hallucinations, especially when tired or when woken mid-sleep. I thought everyone had such exhaustion so strong that they wanted to cry because of difficulty functioning due to tiredness (that last one, people have been trying to convince me of that for years – “everyone’s tired” – except, no).

    So, I’m getting this study. And if I end up without a diagnosis of narcolepsy, I’ll be surprised.

    And I have a stupid fear. A really stupid fear. I’m a writer. 99% of my fiction novels, I’ve dreamed, beginning to end. If my REM is delayed, and I dream less, I’ll have fewer ideas to write about. Yeah, I know…that should be the least of my concerns.

    Now, to figure out how to accept “prescribed” naps when I’m a full time teacher, part time writer, and full time mommy of two toddlers…

  2032. Heather on March 4, 2016 at 8:43 am

    Hi Julie, Will we have the opportunity to read your chapter. It could be very helpful to parents of pwn also. Or is this book for health professionals only? Well done. I can relate to your comments re this not being ‘writing for pleasure’ type thing – so extra well done! Best always, Heather

  2033. Carrie-Ann Burns on March 27, 2016 at 2:18 pm

    Congrats, this is absolutely beautiful and a great way to spread awareness and support!

  2034. Carrie-Ann Burns on March 27, 2016 at 4:05 pm

    I have yet to see this episode, or watch the new episodes of the Simpsons, but maybe I should check it out. I hope it was better than we were all predicting, though I do have a lot of doubt it will be.
    Good on you Julie for keep pushing forward for proper presentation of this disorder through media and tv.

  2035. Carrie-Ann Burns on March 27, 2016 at 4:11 pm

    So very true thank you for your words. I will share this with many others.
    My favorite part was when you said, “Interesting that Marge would stay with Homer for all these years when considered so lazy, but now that it’s discovered he has an actual medical condition and is getting treatment, their relationship suffers. That stinks.

    But what stinks more is that people see Hollywood’s version of narcolepsy on screen and assume that this is representative of the real condition. This perpetuates misperceptions leaving those of us with the disorder feeling misunderstood and isolated. There’s a stigma around having narcolepsy and many people keep it private to avoid undue jokes, ridicule and discrimination.”.

  2036. Carrie-Ann Burns on March 27, 2016 at 4:44 pm

    He is such a cutie and is doing so well now!

  2037. karen on March 29, 2016 at 5:17 pm

    Julie, you never cease to amaze me. What a way to see the world! You spread goodness and cheer along with your message everywhere you go. I remain your devoted fan & follower. Keep up the good work!

  2038. marion on March 29, 2016 at 7:17 pm

    Julie it was so brilliant to have you here in person. The U Tube clips do not do you justice. Your talk had me in tears & made me smile. Your positivity is contagious. Next time we’ll kidnap Ya & hold you hostage here in the west. 🙂
    Thanks again
    Marion
    Namaste xx

  2039. Kathy O'Brien Pinter on March 30, 2016 at 1:56 am

    Thank you so much for sharing your trip to Ireland and all your other stories. My dad had narcolepsy. And while he passed away more than 30 years ago, he and his challenging disorder are still part of my daily thoughts. I enjoyed your book and appreciate your efforts to help people face narcolepsy with a smile.

  2040. Andrea Sattler on April 1, 2016 at 8:44 pm

    Wayyy to go Ben!!! That is an amazing tribute!! I don’t know you, but I am so proud of you!!!! This sleepy/wake stuff is so annoying. But what you just did teaches others to stay positive and do incredible things !
    Wow!!
    Very, very cool…..literally…ha ha!!
    Keep on dreaming big dreams and making them happen!!
    xoxo Andrea

  2041. Arnold Gendelman on April 2, 2016 at 6:42 am

    You are a JET, Julie, truly in so many ways as the lyrics rhyme the theme song of West Side Story. I’m sending you some realtime videos from a series of futuristic research that by 2020 it is thought that diseases like Narcolepsy will be diagnosed correctly. In simple terms, correctly meaning our individual biology will be known, for the Doctor to diagnose exactly what will and will not work to help us . One lecture is about studies being done in county Cork Ireland by Dr. Cryan. He is working on creating the Macrobiome testing that reveals what works and does not work. Every medical provider we would go to will require that test be done before treating us. I hope to send it Saturday.
    Warm regards, Arnold

  2042. Dorothylou Sands on April 5, 2016 at 3:56 am

    A student from an Art school in Santa Monica interviewed Andrew and me for his Video class a few weeks ago. Andrew came over to my house as I had never met the young man. He found Rachel’s and my name listed with the names of our support group. Like so many others he had never met anyone with Narcolepsy. He started having symptoms in the 8 th grade.
    I do not know if I told you but I took your book to my Rheumatologist to read. He said he learned a lot he didn’t know before.
    Keep up the good work.

  2043. dblu on April 5, 2016 at 7:37 pm

    Most of my hallucinations are nice. But the last one made me bail out of bed, destroyed the nightstand, and ended up sitting on the waste basket!
    After three times falling out of bed, my doctor prescribed Clonazepam. Great stuff. Almost the end of hallucinations and falling out of bed.

    But I miss my little friends that visited me every night [in hallucinations].

  2044. Michael Hennessey on April 8, 2016 at 8:50 am

    Hi Julie,
    That is a nice HH.
    I find lately a 8 to 10 hour sleep I wake up for about 2 hours and then need to lay down for an hour to feel refreshed.
    My HH has mostly been bad also. I am a combat Viet Nam vet so you can imagine what mine focus around.
    I am also the primary caregiver for a wife with serious medical problems so a lot if the time am trying to wake up to help her but can’t and of course she is soundly sleeping.
    I enjoy following you. Keep the stories coming.

  2045. Niamh Laste on April 10, 2016 at 5:02 pm

    Julie you were so inspiring. Loved hearing your story and how you deal with things as I am only 13 and find it hard sometimes. Having someone like you to speak on behalf of everyone with narcolepsy is amazing. You’ve helped me see that other people struggle like I do but that there are ways to carry on. I loved listening to you.

  2046. Stephanie Chase on April 14, 2016 at 3:32 am

    I am 32 years old and 4 months into my 4th pregnancy. It seems to be more challenging each time but usually starts to get better around 20 weeks or so but always has come back within a few months after giving birth for me. My children are 12, 7, 15 months, and due in October

  2047. Dorothylou Sands on May 4, 2016 at 11:33 pm

    I always enjoy your current information regarding narcolepsy. I had a young man come by my house a little over a month ago. He was studying to become a videographer and also had narcolepsy. Andrew, another member of the L.A. Support group came by my house to support me as I did not know the young man. He interviewed us in my drive way. I haven’t heard from him so I don’t know how it came out. He was attending an Art School in Santa Monica.

  2048. Lindy-Lou Trueman on May 5, 2016 at 2:35 am

    I loved this and am looking forward to more episodes.
    I had gone to a Dr at a teaching clinic, thinking that they might be more open to learning something new. I had with me the questionnaire from Stanford Centre for Narcolepsy (which was the first thing they asked for when I finally went to the UBC sleep clinic) He told me that they had their own sources and you can’t believe everything you read on the Internet, while at the same time admitting that the only thing he knew about narcolepsy was from tv and the movies.
    He said he would refer me to the sleep clinic, but they had a really long wait list. Six months later I phoned the sleep clinic to find out where I was on the wait list and they had never heard of me.

  2049. amy spence on May 13, 2016 at 9:45 pm

    this is my baby sister who IS a superhero! nobody understands what it takes for her to go about everyday life that most take for granted. she may be my little sister but she is my hero!!!

    • Beth Parker on June 8, 2017 at 7:54 pm

      She is so blessed to have you! It makes all the difference in the world to have a strong support system. Her life will be richer and her confidence stronger because of your love and understanding. You’re a superhero, too!!

  2050. Charles Raley on May 13, 2016 at 10:58 pm

    My friend, my coworker, my hero.

  2051. Tanisha Conley on May 14, 2016 at 12:09 am

    Wow Wendy, that is very inspirational, I am a nurse also, 38 and a mother of 6. I am a dance coach, and a football mom. I have to wear many titles….Super Mom, Super Nurse. Super Coach, Super Wife, and stay awake and function as much as possible with very little sleep each night. I have suffered from Narcolepsy since I was 14, however, I was not diagnosed until I was 21 years old. I have faced a lot of rejection, seclusion, mockery, and insulting remarks. I have been referred to as lazy, and incapable of getting things done. I think, working a full time job, raising six beautiful active kids, participating in extra curricular events, and running a busy household is far from lazy, especially for a person that suffers from narcolepsy and mild sleep apnea. Although Hollywood, likes to present the disease as comical. It is far from funny; for many years I was afraid of starting a family, telling employers, requesting accommodations to maintain employment, and DRIVING. I struggle everyday to do my very best for myself and my family. I am a real-life Super Hero that lives with Narcolepsy, and I would not wish this difficult reality, on my worst enemy, or Super Villan. I hope to raise more awareness for young adults, and educate others on how to accept narcolepsy as a real issue that needs much more Awareness and research. For many people with narcolepsy, still need a voice to advocate for them, and let others know what this unfortunate disorder is really like. I plan to join in a be one of those voices. Thank you, Wendy, Happy Nurse’s Week, and thank you Julie. From a Nurse with Narcolepsy!

  2052. Arnold Gendelman on May 14, 2016 at 11:46 am

    Julie
    Simply said.
    Without you, your commitment, your incredible spirit, and fight for a better and more beautiful life…we….all of us, would be alone.
    I noticed that Huffington wrote and published a book about the importance of sleep.
    How did she, all of a sudden, become the expert? How much of what she has in it came from your work. I have not read it yet, only sharing my sense of it with you, it needs to be checked.
    Warm regards always and everywhere,
    Arnold

  2053. Laura on May 15, 2016 at 7:54 am

    So proud! Well done, Julie! I know you’ll represent the narcolepsy/hypersomnia community well!

  2054. Liz Trondsen on May 15, 2016 at 5:14 pm

    Julie,
    We can never thank you enough for all you do for us!

  2055. dsinatra on May 16, 2016 at 3:48 am

    So. So. Exciting!!!! You are amazing and inspiring, and I feel blessed to be able to follow your journey! You GO!!!!!

  2056. Susan on May 16, 2016 at 3:20 pm

    Dropped a line to Kelly. Suggested she have you on her show to discuss the realities of Narcolepsy.

  2057. Heather on May 17, 2016 at 2:23 pm

    Such wonderful news Julie!!!!! That’s just GREAT, GREAT, GREAT! Wish you well. xxxx Heather

  2058. William Johnson on June 10, 2016 at 11:58 pm

    Julie,
    I don’t think you have any idea how profound your statement is: “Not talking to your Narcolepsy patients about social support is a medical error.” This should be the standard that JACHO uses for every retrospective medical audit it does, especially for invisible diseases like Narcolepsy/Cataplexy which can run the whole range of ADL’s and IADL’s that unless a practitioner has the same disorder or lives with a person who does, they are clueless about what actually happens to a patient once we have our 15 minutes of fame with a doctor and leave….

  2059. Amanda on June 15, 2016 at 3:27 pm

    Hi,

    I had just recently found out that I am pregnant with my 2nd child. I am between 6-8weeks pregnant. I have both Narcolepsy and Cataplexy my neurologist that I see said that I have the worst case of both that he has ever seen. It all started in the beginning of 2014 and seemed to get only worse. I didn’t know exactly what it was that I had so I went to a regular family doctor and told her when i laugh I fall and she looked at me like I was completely crazy. So my mom started doing research and came across a YouTube video of a girl explaining when her friends make her laugh her muscle tone gives out on her and she falls. The girl in the YouTube video said she had been diagnosed as a narcoleptic and had both Narcolepsy and Cataplexy. So after watching the girls video me and my mom realized that I am narcoleptic. So I told my family doctor the one who looked at me like I was crazy and she said she has never dealt with a narcoleptic patient before. So she signed some papers and had me do sleep studies which had reported that I was indeed narcoleptic. So I saw their neurologist and he looked at me and said he didn’t want to treat my condition. So he gave me a card for a different neurologist which he’s much better any way. I walked into the new neurologist office and he took one look at me and diagnosed me Immediately after I walked in. I’m supposed to take 3omg in the morning along with protriptaline a long with another 30mg. I really want take my meds but since I’m pregnant I’m worried about trying to stay awake to take care of my 7 year old child. At night I still have sleep paralysis which scares me. I was wondering should I still take my adderall or if I should see if I can take something else? All your help and advice.

  2060. Aleigha on June 22, 2016 at 4:50 pm

    Thank you all for your stories and making me feel “normal”. I was diagnosed with Narcolepsy in 2013, I was the single mother of a very active little boy. I just got married last July and have been stable on my meds for sometime. We didn’t plan on having any more children (he has a son 3 weeks younger than my son). I had the IUD in and somehow (they say most likely with a bad menstrual) it came out. I have wanted another child for some time but with my Narcolepsy and other health issues we thought it was to risky. We found out that my period we were waiting on wasn’t coming on Mothers Day. I haven’t had medication since. The first couple of weeks were fine (I think it was due to the excitement of finding out). Then it was like I hit a wall, and not the normal wall that I would hit half way through my work day and then take another dose to make it through, it is like the great wall of china and no amount of sleep or rest is able to get me past it. I haven’t been utilizing coffee due to the recommendations (trying to go no caffeine). I work full time and my job is super rewarding but extremely stressful. I am napping daily at lunch and I try to rest when I get home but just feel lazy (I know I am not but hormones are messing with me). I identified with this article so much, I find myself making little mistakes throughout the day, and I’m not my normal OCD self when it comes to my work (I know people around me have noticed). My employer is aware of my Narcolepsy and aware of my pregnancy, however being aware isn’t being informed and I don’t think they understand what my body/brain is actually going through. I cry all the time, I know I am not depressed.. I AM EXHAUSTED. Suffering from symptoms of extreme sleep depervation even though I am sleeping frequently I AM NEVER RESTED. I have had a migraine that won’t even give a little for about 3 weeks now. My sleep paralysis along with my awesome realistic movie like nightmares are becoming more frequent. By the time I get home from work and picking up the kids and making dinner I don’t have it in my to shower much less take care of the house. I feel like I am not carrying my weight but I know my husband gets it, and I know he has my back. He is the most supportive over protective person I have ever met, and I am beyond blessed. My mom is a huge help too, she is always there for me and I am lucky to have such a great support system. However, I am a very independant person and it sometimes really bothers me how dependent I am becoming, but this article gave me a different perspective that me becoming dependent isn’t as big as a burden as it is a blessing. I am bring a life into this world and I want to be excited about it, but I’m too tired to get excited 🙂 It sounds like a lot of people feel a little better in the second trimester and I am almost there. Did any of you working mom’s make it all the way to your due date working full time without medication? Thank you again for this article.

  2061. Elena on June 30, 2016 at 8:08 pm

    I’ve been falling asleep nearly daily (during seated activities only) since high school (every teacher saw me sleeping at some point), through 4 years in the Navy being thought of as “lazy,” through college (where I would fall asleep at the computer with the instructor leaning over me, trying to show me how to do something), and now into my career, where I will fall asleep at my desk or right in front of my department head in a meeting. I had a sleep study done several years ago, after 2 car accidents where I fell asleep at the wheel, but they decided it was caused by poor sleep hygiene. I now average 7.5 to 8 hours of sleep a night, sleep well most nights, and wake up feeling rested, and have less sleepiness than before, but it is not gone. In the past few months, I have started to have bouts of excessive yawning, where I will have the uncontrollable urge to yawn as deeply as I can (often it takes several attempts to satisfy it) up to over a dozen times an hour to the point where my neck becomes sore. This isn’t all day every day, but it is usually when I overeat, am tired in the afternoon/evening, or while exercising (like, have to step off the treadmill in order to yawn). My husband thinks I should have a sleep study, but I’m afraid that if I am narcoleptic, it is so borderline that it may not be diagnosed at all, wasting time and money for nothing. Can you and your readers weigh in?

    • Lynda Allen on December 9, 2018 at 10:29 am

      A sleep study would be a good idea. I was diagnosed with hypersomnia. In my opinion, that is borderline narcolepsy. (My dr corrected me, but didn’t change my mind.) I was given medication, which does help some.

  2062. Paula on July 6, 2016 at 9:40 pm

    Hi Julie:

    Do you have any suggestions on how I can start a support group in Wilmington, Delaware?

    Paula B.

  2063. Lynda Allen on July 7, 2016 at 12:08 am

    l just came across this website. I have a dx of idiopathic hypersomnia. I have spent most of my life in exhaustion. Was dx about 7 yrs ago. l am looking forward to finding more info. With treatment/medication, l am better, but there is still room for improvement, be it with energy or with coping. Thank you.

  2064. Kadeshia on July 14, 2016 at 3:55 am

    Hi I ran across your daughters story and noticed a very disturbing similarity. My son received the H1N1 vaccine in 2009 and began having symptoms of narcolepsy within two weeks. I knew immediately that his symptoms were related to the flu vaccine. He was a healthy and active child before this shot and there was an absolute difference after he got the vaccine. I told everyone that would listen that I thought his symptoms and the shot was linked but everyone thought that I was crazy. I even contacted the CDC to file a complaint but they denied it as well. Do you know of anyone else with children that developed narcolepsy after the 2009 swine flu shot? These cant be isolated events.Hope you get this message. I know this post is a few years old. Thanks and hope to hear from you.

  2065. Sidney on July 16, 2016 at 3:00 pm

    Hi Julie,

    Thanks for your great awareness campaign on Narcolepsy.

    Atos a doctor, living with Narcolepsy in South Africa, I now consider you an ambassador for PWN (Persons with Narcolepsy).

    Keep up the great advocacy work, but please don’t forget us, Africa’s endangered narcoleptic human species, unfairly denied rights to standard recommended treatment, work, health, dignity and justice!

    Like DrX @endangeredsoec9 (on Twitter) a genius, doctor and REM/EDS researcher, we are literally considered endangered human species, and incredibly denied basic rights, like other humans.

    You are my super_hero.

  2066. Lara on July 18, 2016 at 1:49 pm

    Hi my young adult daughter was diagnosed a few years ago with Narcolepsy. She does all the recommended things to help live with this disorder i.e. correct naps, diet, exercise, medication, dr. supervision, even some talk therapy a wile back. I am so supportive and have studied enough to understand this disorder is very challenging. Here is my problem…my daughter gets very irritable (part of it) and she targets me. Sometimes its so hurtful. I don’t want it to damage our relationship, as she is in her young 20’s and a very responsible person for her age. I need to find support. Lot’s of support for the narcoleptic, but not for family. Her father is supportive too, but getting impatient with how she treats me and talks to me. She doesn’t do this to him. so its causing friction in my marriage. I want to deal with this in the best way for her. Any help or links etc. would be much appreciated.

  2067. Amber on July 19, 2016 at 3:37 am

    Julie, Thank you for your blog. It’s helped me put a face and human story to narcolepsy apart from the dry medical descriptions I’ve read.
    After taking an overnight sleep test, it was found I don’t have sleep apnea but my have narcolepsy without cataplexy. I am exhausted all the time and sometimes tell my husband I wish I could sleep for 100 years. But I have a hard time napping and I usually don’t dose off during the day. Is there a difference between exhaustion and sleepiness?
    Amber

  2068. Kathy Devita on July 21, 2016 at 12:37 am

    I am ever so grateful that you have the strength you have to keep on telling the rest of the world to “wake up”. N was diagnosed when I was about 55 or so, and it made me invent insane strategies to cope with everything in life. Once you know what you have the excitement fades as you find out NO ONE ELSE knows what the heck N and C are. Worse, the medical world is still looking at you with skepticism along with the pharmacists, the employer and even family who has seen your face in the food at suppertime!! You will even doubt yourself and your capabilities but all along you KNOW you will fall asleep without a nap every 3 hours for sure. I am 71 years old and I have been told about 3 or 4 times in the last few weeks, “You’re not disabled!” and this was by both someone who never heard of narcolepsy and also by a close family member. I kept thinking about this while my stomach burned from 20 medications I take for staying awake, anxiety, highblood pressure, heart palpitations, high cholesterol, diabetes, leg cramps and feet pain AND numbness and now real serious financial troubles. I mumbled sort of out loud, ” God forgive me for referring to amputees and poor veterans who have lost limbs etc., but I wonder how would all these people who say I am not disabled would feel if they were told they WILL NOT use there arms or legs or brain for the next 20 minutes. They would also be told this will occur every 3 hours for the rest of your life!! (and maybe “on demand, too.) Oddly, no one prepares them for the stares they will always get, the disbelief of others, the inconveniences, the genuine concern for safety and well being with the daily medications and then their own self doubt, the loss of so much precious time, etc etc.
    Naw… I am not disabled. But I still feel very alone and now probably a wee bit heartbroken and worn down. I think this is really “real” tiredness..

  2069. kathryn harwood on July 22, 2016 at 2:33 pm

    Hi Julie, So glad to find you. I was diagnosed with narcolepsy 40 years ago. I’m still standing! There have been many difficulties but I try to look at this as a gift.
    I hear your struggles with friends and family understanding. I usually discontinue a friendship if this is regarded as a joke. There are enough issues with self-esteem. I am now 77 and have no other health issues. Narcolepsy has made me live a regulated, healthy lifestyle, helps me trust my real friends and gives me spiritual insights what I may not have developed otherwise. I was lucky to have found a support group when I was first diagnosed in Toronto.

  2070. N. Leptic on July 31, 2016 at 8:47 am

    Kathy — I don’t think Julie is a typical narcoleptic — my doctor said so and I think another one on a panel said the same. She’s what they call an “outlier”. The interviewer was sharp, and age seems to be a factor. The danger here is everyone will think we are capable of doing what Julie does. I hope she tells people she’s not a typical case, because a typical narcoleptic wouldn’t have the energy to go around the world like that unless they could tolerate very high stimulant doses, which are potentially unsafe. Eventually, tolerance sets in. It’s almost universal.

    I’ve taken Xyrem … 9g — it goes 75% of the cataplexy, which was mild.
    It did SQUAT on EDS/stamina/energy.

    Adderall XR … up to 60mg — worked great at first — too many side effects.
    Vyvanse … up to 70mg — miracle drug — no longer works.

    etc. etc.

    So what is this girl’s secret? I am on disability. Would like to know because I want to do what Julie does. I don’t see any narcoleptic nursing homes, and my doctor said they would have to put me in a nursing home at age 46! Going off the stimulants leaves me bedridden for days on end, then they will be somewhat effective, but the tolerance quickly returns.

    Again, what is her secret? There is Mali Einen at Stanford who takes no stimulant and Xyrem alone. Well how does that work, when even Orphan Medical’s data doesn’t show that it can bring EDS down to normal levels. It’s what, an Adderall crash in reverse?

    Julie — if you read this, please tell us. No offense, but I wouldn’t want to make my career narcolepsy if I was functioning as well as you, so I’m not sure what your message is. I worked for 20 years as a consultant for 10 companies at least, was president of a condo, and now I can’t even mow my lawn.

    Tackling narcolepsy isn’t “motivation”.

  2071. Rebecca on August 3, 2016 at 4:31 pm

    Hi Julie! Any interest in including folks that are diagnosed with IH that manifests closer to narcolepsy in this? I fall in that boat (pre-MSLT diagnosis was narcolepsy), and tend to identify more with PWN than PWIH in my symptoms. I’d love to get involved, but as I read this I’m limited by my diagnosis. Thanks!

  2072. Maryellen on August 10, 2016 at 11:09 am

    Julie, I am blown away by your book. I am only on chapter 9 and as I am reading it , it is as if I wrote it myself. I was dx 17 years ago after spending 2 years trying to find out what was wrong with me. Reading your books has brought back a lot of memories for me. Unfortunately not good memories but that is ok because it is inspiring as well. People with Narcolepsy should not feel alone and it sounds like you have helped many people realize this. Anyways, I am enjoying your book and will recommend it to others.
    Maryellen from Maine

  2073. Maya Edieann Gabriel on August 10, 2016 at 10:36 pm

    Hi, Unfortunatly, I missed your talk on the sumit on Monday, and yours was the one I was most interested in.
    Where is the best place for me to start to figure out if I have narcolepsy. I cannot get my GP to help me.(typical)
    I’ve been nodding off for most of my life. It’s my normal. I’m finally realizing I might be able to change this.
    Thanks, Maya

  2074. Sarah with NwC on August 13, 2016 at 8:18 pm

    Thank you, Julie, for your honesty about your experience, your courage to go against the established mainstream understanding of N, and for being a voice for many of us who aren’t in a position to speak out.

  2075. Erin on August 13, 2016 at 9:20 pm

    Your response is validating and informative, not to mention respectful to the individual who wanted to know your “secrets”. I personally was a bit put off by this individual saying you were an “outlier” because you’re not a “typical” narcoleptic. I don’t have cataplexy. Does that make me an “outlier” too? But I have debilitating EDS to the point where my sleep latency for my MSLT was 0.7 minutes. Not even a full 60 seconds!! I joked that I could “fall asleep on demand”. I was also taking a REM suppressant at the time and couldn’t wean off of it in time for the study like they had wanted me to, and I took it in the morning so it should have suppressed REM during my study, yet I went into REM in 2 out of the 5 naps.

    So what makes a “typical” narcoleptic? Does a “typical” narcoleptic have to have such debilitating symptoms that they LOOK as sick as they FEEL? Do they have to be on disability, unable to work, or mow their lawn? Because I don’t fit that description. Ever since starting Xyrem and Adderall XR 20 mg in the mornings with 5 mg of immediate release Adderall for the afternoons for any breakthrough sleepiness, I have gone from falling asleep at work, almost getting into an accident during rush hour traffic when I dozed off driving and was woken just in the nick of time by the bumps on the side of the highway (which were made for this exact reason, apart from adding some traction during inclement weather if people are sliding off the road), guzzling two to three cups of coffee in the mornings in an attempt to stay alert enough to do my job even halfway decently, and coming home to nap for hours at a time yet never feeling rested, having sleep paralysis and hypnogogic dreams that were terrifyingly real and scared me to my core at times. I went from this to slowly being able to be alert at work for 6 hours, still needing some coffee in the morning for an extra boost, but otherwise feeling fairly awake (well, when your “normal” was tilting your head back as far as you could while driving but still being able to see yet the angle of your head made it difficult for your eyes to close because the strain of doing so was uncomfortable, slapping your face while driving just to have something to alert you, having your windows slightly open on the coldest days in the winter so that the cold air keeps you awake, leaning up against the wall in the bathroom at work just to “rest your eyes for just a minute” only to realize you fell asleep for about 5-10 minutes once your body jerks yourself awake from a rather vivid dream) “fairly awake” becomes life changing in comparison to what you had once considered “normal”.

    I never knew life any other way then merely trying to survive the exhaustion thinking “I’m in high school, I wake up at 5 am every day OF COURSE I am tired and can’t stay awake during certain classes,” or “I’m in college, I have classes all day and tons of homework keeping me up late at night, OF COURSE I feel so tired that I nap in between any class where I have time to do so”. That’s just what life was. I thought that’s the way everyone was too. Everyone around me seemed as tired as I was so I wasn’t a special case.

    Now that I have felt better than I ever have in DECADES (don’t get me wrong, Xyrem is NOT consistent and my insomnia is FIERCE so that even Xyrem doesn’t always help me fall asleep, so I still have some terrible days, but you don’t see that on the surface when you look at me…I’ve learned since I was 15 when these symptoms started, and I am now 33, diagnosed at 29 when someone FINALLY took me seriously and listened to my concerns about my sleeping patterns and FINALLY thought that it might be something more than just “depression”…I learned how to “fake it till you make it” when I’m so tired I feel like a damn zombie…I still have days where I feel like I could sleep standing up). But now that I have reached a NEW “normal” whenever I have issues with insurance and have happened to run out of my meds, and I am back to pre-narcolepsy treatment functionality, even for 2 or 3 days, I will reach a serious low point because now that I have been accustomed to my “new normal” I don’t even remember how to fake it when I have been forced to endure pre-treatment functionality. I get angry and miserable to be around and I become “that person” again and I strongly dislike “that person” before treatment.

    I have met a few people with narcolepsy and talked to many, many more. And not a single one has had experiences EXACTLY like mine or EXACTLY like someone else’s. I am envious of Julie’s ability to be as productive and effective as she is, but I am PROUD of her because she wrote a book that allowed me for the FIRST time after being diagnosed, to really and truly feel understood. I’ve sent private messages to Julie and she takes the time to answer them. I have thanked her for sharing her very real, and very raw, story of her journey with diagnosis, grad school, losing her number one supporter, and running a marathon to show that she won’t let this awful disease get her down. She shares her very real experiences and I really, truly, hope everyone with narcolepsy reads this because I can guarantee that in her story you will find SOMETHING you can relate to. No, I’m not saying you will find that her symptoms and experiences are EXACTLY like yours or are the symptoms of a TYPICAL narcoleptic. Instead, it’s her raw emotions and the grief that comes with this disease, it’s the way she tells it like it is and shares herself so openly with all of us that really makes her my idol.

    She’s not perfect. No one is. And anyone with narcolepsy knows exactly what it’s like to have this invisible disease because, while I am not making this a generality, for many people with narcolepsy we have had to learn how to hide what we are feeling because we have been told so many different things whenever we say, “I’m exhausted”, that we have given up trying to explain it and instead push that part of us aside so that we can LOOK like everyone else. That isn’t the case for everyone and I know that, because the most important point to Julie’s response is that there is NO SUCH THING as a “typical” narcoleptic.

    I really hope that this individual uses their passion to advocate for themselves and others. I admire their drive and their persistence with working with their doctor to find the treatment that works best for them, and my heart goes out to them with every tolerance gained after medication worked wonders for them. I hope that they will be a part of Julie’s Rising Voices of Narcolepsy because this person’s story NEEDS to be heard.

    Well done, Julie. Well done.

  2076. kathryn harwood on August 13, 2016 at 9:35 pm

    I agree with you, Julie. I was so lucky, after my diagnosis, to be in a sleep disorders support group in Toronto. Noone is “typical”. I am lucky that I have only mild narcolepsy and don’t have cataplexy as severely as you. I have not been on medication for 20 years, living a simple lifestyle and accepting my limitations (grudgingly). I also quickly dump “friends” who criticize or joke about the condition. I was a free-lance dental hygienist. I could work only 4 days a week and took “power naps” in my dental chair. You just have to be creative. Sometimes I look on this as a gift since it often gives me spiritual insights. When I was downhill skiing at a mountain, I would ask to nap on a stretcher in the Ski Patrol hut. Most people are helpful.

  2077. Geraldine Gruszczyk on August 14, 2016 at 1:38 pm

    Impecable!

  2078. Kathy Devita on August 14, 2016 at 3:23 pm

    Hello Julie. Fate is funny. I swear this blog is so important to me. Just today I thought about N and my insane childhood. How many people told me to “get over” my childhood, that other children went through worse, and I realized how the heck could I ever do that!! My n nightmares take me back to those childhood fears with an unbelievable reality. Every heartache gets repeated, every mistake I ever made comes cruelly back. Of course in my nightmares I may be 12 years old or 40. I may be on a boat or field…nevertheless the main theme is the same as something that happened decades ago. I wake up sick sometimes, or crying. At 71 I still hold onto my dog for comfort. Mainly I wanted to say Thank You again, because you posted your answer saying a “better” childhood and life did have an impact on you. I know that because of my childhood problems I DID have the strength and determination to work and raise my kids as best I could. But gosh, I’m more tired than I ever was, now. Believe it or not I cannot find a therapist, physcologist (whatever) that has knowledge about Narcolepsy and depression etc. (Supposedly there is one in Miami and someone is trying to find the name.) I am in Broward and I, of course, do not drive too far.. BUT I CANT find any doctors that fit that bill.. I don’t need a diagnose for N. I need support for my “head”. Your blog has at least let me know I am not totally crazy… and again.. not totally alone..

  2079. Kara L on August 14, 2016 at 3:37 pm

    You’re response is wonderful. The comment even made me feel awkward with my own life. I have found Narcolepsy groups on Facebook with so many amazing people and the biggest thing I notice, NO ONE has the same issues. There is no such thing as “typical” when it comes to narcolepsy, cataplexy and idiopathic hypersomnia. I never feel rested after a nap. I get very anxious if I sleep too much because so much of my life has been sleep and I don’t want to miss my life because of sleep.
    I am working and going to school with narcolepsy and idiopathic hypersomnia. I get overwhelmed by the idea of “what if” I can’t be independent someday or “what if” I have a child someday and can’t wake up to care for it. What’s and ifs plague my life but I shove them down and keep going. I have an amazing team of medical professionals that I can contact anytime I need them. Therapy is one of the biggest things that help.

    Julie you don’t have to ever defend your life or symptoms. I’m glad you wrote your book but we are all different and unique. If someone doesn’t understand that, it’s okay.

    • Sara Kowalczyk on August 16, 2016 at 2:48 pm

      Hi Kara,

      I don’t know if you will check these replies again, but if you do, I am studying Narcolepsy and IH for my doctoral degree in neuroscience, and I have only come across one other person who has been diagnosed with N and IH. If you could comment here or privately about your experience [whether it be chronologically based or symptom based], as well as if the double diagnosis was driven by need for additional accommodations, I’d really appreciate it. You can reach me at sknarnet@gmail.com. Thanks,
      Sara Kowalczyk

  2080. Anne Shusterman on August 15, 2016 at 6:26 am

    Julie,
    As a mom of child with narcolepsy I continue to applaud your voice, advocacy, and commitment to educating people about what narcolepsy looks like and hopefully earlier diagnosis. Thank you.

  2081. Dorothylou Sands on August 15, 2016 at 7:14 am

    I have learned from our support group in L.A. that almost everybody is effected by narcolepsy in a different way. Also medication reaction is different to different people. I am 82 years old and have had Narcolepsy since I was 12. No doctor I went to seemed to know why I slepted until I was almost 30. I learned to live with it. My biggest disaster was not being successful in my original attempt with college. I later graduated when I was 56 years old. I only take medication if I am attending a class or lecture. I take short naps if I have to drive very far. The more interested I am in something lessens the chances of my falling asleep. I sleep every Sun. during the sermon in church.

  2082. Heather on August 15, 2016 at 10:41 am

    An excellent and respectful reply Julie – well said indeed! Thank you. 🙂

  2083. Heather on August 15, 2016 at 10:41 am

    p.s. And a fair question asked also!

  2084. Maya Edieann Gabriel on August 15, 2016 at 6:55 pm

    I’ve been falling asleep during the day for as long as I can rember. I’m 55 years old. For me, I feel all of the blood falls out of my brain within 10 minuets of sitting down. I can’t stay awake no matter what I do.
    I say your interview om the Sleep Sessions with Dr. Bruse.
    I will take what you’ve talked about to my Dr.
    THANKS, Maya

  2085. Unell Hobbs on August 15, 2016 at 7:38 pm

    My daughter just completed Nursing School with a 4.0. and is now a Registered Nurse. She works a 40 hour week with 12 hour shifts (both days and nights). Most people who didn’t know her during, the horrible asleep years, don’t know she has Narcolepsy. Thank God for a doctor that finally said “why haven’t you done a sleep study” and Xyrem she was able to get to where she is today. Just like Julie she has developed a routine that works for her right now. Please note the word “now”. The routine is always being adjusted. It is a life style were she has to make choose about what is realist for her to accomplish. She has to say no to things she would really like to do because they can not be worked into when you need to eat “so you can take your medicine” schedule or she needs to take a nap. Narcolepsy is not a linearly disorder. There are so many peeks and valleys unless you live with someone you might not see the bad times. Julie has been a great role model for my daughter and I. We met her right when she was starting to get a handle on her narcolepsy and it gave us such hope that there was life after narcolepsy. She is our hero!

  2086. Sara Kowalczyk on August 15, 2016 at 9:04 pm

    My one addition that you didn’t mention, and you also share with Nicole Jeray (famous N-golfer in advocacy too), but others too in the narcolepsy advocacy world:

    Post-puberty development of NT1 (narcolepsy with cataplexy)

    The longer one is healthy and “typically developing” may, in addition to everything else you described, contribute to your abilities, dedication to, and reasons for becoming such wonderful advocates.

    You also didn’t credit your undergrad major which really gave you an edge on being able to tell a great story, if memory serves me right. Wasn’t it creative writing? You have a talent, that is for sure.

  2087. Sara Kowalczyk on August 16, 2016 at 2:38 pm

    If anyone is looking for a great read quite pertinent to this topic and a really unique spin, I highly recommend Malcolm Gladwell’s “Outliers” — this post got me thinking about this amazing book about underdogs and outliers. It was really hard for me to put down, that is how much I liked it. And it gave me new perspective.

  2088. Gail Pean on August 23, 2016 at 2:34 am

    Congratulations Julie!! You are an inspiration to all to complete their creative projects and follow their muse.

  2089. Jennifer S. on August 23, 2016 at 11:51 pm

    I truly can’t even begin to imagine how insanely AMAZING this must feel to you! From the bottom of my heart–CONGRATULATIONS!!!!!!!

  2090. Mia on August 28, 2016 at 6:41 am

    Congratulations and Thank you!
    Wish you all the best
    I will definately get myself a hard copy!
    // Mia

  2091. Indie on August 29, 2016 at 8:41 pm

    This is your calling for sure!

    What a great achievement & contribution for others!

    Well done!

  2092. Tami on September 9, 2016 at 6:01 pm

    I am so grateful for this. My son was recently diagnosed at 9 years old with Narcolepsy after the scariest and most difficult 18 months of our lives. It has been an uphill journey but I am so thankful for resources like these and for reading others’ stories, it really gives me hope. I wish my Jack and Owen could meet – these poor kids need to know they are not alone!

  2093. Taylor on September 13, 2016 at 10:30 pm

    I have an 8 year old non English speaking student who was just diagnosed with acute onset narcolepsy with cataplexy. He is due back at school in a couple of days after several days in the hospital. No meds at this time. Upstairs classroom. Can anyone advise on what some of our next steps should be?

  2094. N. Leptic on September 17, 2016 at 2:32 am

    Amazing story Julie — thanks for sharing. You are sharp, because I always notice you say “if you find naps helpful”. You’re right, “no two cases are the same”. 3.5g of Xyrem wouldn’t even knock me out. I don’t think all narcolepsy is the same.

    Let me share my experience. Xyrem, well, it felt like I was overdosing on something while taking it. It didn’t produce natural slow wave sleep. I could tell because I woke up from a dream and said to the tech, what stage was I in? 3. Most dreams occur in REM. Tests were done on healthy subjects where one group napped on Xyrem in the afternoon, while another did not. Both groups slept at night without Xyrem. It would be expected that the Xyrem nappers would have less slow wave sleep at night because they showed additional slow wave during the nap than the non-Xyrem group (this is called homeostatic N3 drive/pressure), but they did not. Therefore, it was concluded that Xyrem didn’t produce restorative sleep, but was a smoke and mirrors trick, like the old Dexamyl (a sleeping pill around a stimulant core). Research done in the 70s shows that Xyrem is a stimulant crash in reverse, but that the drug has neurotoxic effects during the wear off phase. After that, there is an increase in serotonin and a few other neurotransmitters.

    That is a very low dose of Adderall. You are indeed lucky! Most require higher doses which are cardiotoxic. Remember that XR is not extended release, but bi-phasic pulsed release. It is the same as taking two 7.5mg doses of Adderall IR spaced x hours apart. It’s simply a matter of when the 2nd phase pellets hit your small intestine and become unlocked. Usually a napping strategy with XR doesn’t work very well. Naps seem to have something to do with adenosine clearance — this is speculative on my part though (I have no proof). Coffee naps work on those — ie., take a coffee just before your nap. Unfortunately, naps don’t really refresh me for more than a hour.

    Cataplexy is a strange creature. Its source is not the same in all patients. I was once considered a mild case, but unfortunately, I’m a rapid adapter. What’s interesting is the severest cataplectics are not the severest narcoleptics, which contradicts Stanford’s theory. If hypocretin is 0 in these cases, 15mg of Adderall would do nothing, because that isn’t even an effective dose for ADHD.

  2095. Miranda on September 25, 2016 at 8:52 pm

    Your response gave me goosebumps.

    Thank you for being brave enough to share your story with the world, for encouraging others to use their voice, and for using reflecting on the advantages you have and considering how you can impact the lives of people who don’t have the same advantages. That, to me, is a clear mark of authentic leadership tied to a bigger purpose.

  2096. Jenny on September 29, 2016 at 10:51 pm

    Hi! I am a current high school junior and I know I cannot apply until I am a senior, but first I was just wondering if this scholarship will be given in 2017. Also, if I am diagnosed with IH based off of a sleep study from two years ago (insurance wants us to meet a deductible that would end up having us pay for a new sleep study) but my sister has narcolepsy and my mom also has IH….am I even eligible with an IH diagnosis? If I had dreamed in one more of my naps I would have been diagnosed narcoleptic. I hope you see this! Thank you so much! 🙂

  2097. Laura on October 10, 2016 at 4:59 am

    Fantastic! You continue to impress and amaze. You have my gratitude twice over–once, for all the great work you’re doing advocating on behalf of those of us who live with chronic invisible illness, and twice, for being such an amazing example of finding a dream and working toward it. Also, I love the message you delivered–patient-involved care is so vitally important, and so is social support. It’s how we get through!

  2098. William S Johnson on October 12, 2016 at 4:36 am

    It’s open season for the Combined Federal Campaign. Just as a suggestion if you have a number you might want to post it in a prominent place on your webpage.

  2099. N. Leptic on October 13, 2016 at 2:33 am

    Hi Miranda, but that’s not it. There is something about Julie’s genetics that make her a good responder to Xyrem and Adderall. Adderall, at 15mg, isn’t even an effective ADHD dose for most children/teens, let alone narcolepsy 1 (which is a much more severe condition). She’s not able to do what she does because she’s Wonder Woman or the Bionic Woman with narcolepsy. Most people on Xyrem 9g and 60mg of Adderall were still 14-18 on ESS from the Orphan Medical clinical trials. The Xyrem drop out rate is close to 70% yearly. That means only 30% stay on it. 15% have a serious AE on it and stop. 16s on ESS (if you believe ESS) can’t really do what Julie does, no matter how hard they try. They would collapse from exhaustion and burn out in a short matter of time.

    I remember Julie did scholarships for children and I cringed a bit. Why? Because all the kids could be trying equally hard, but the milder cases or the better drug responders get rewarded. That’s not fair. You reward children over their effort — the kid on Adderall is going to do much better than the kid of Ritalin. A fairer test would have been … take everyone off their meds and see how successful each is, but even that’s not enough. All narcoleptics are not the same, and the severity varies.

    I’m sorry Julie, you meant well, but you’re inadvertently perpetuating the same stereotype that “if you only tried a little harder” to push through the sleepiness/fatigue/exhaustion … etc. Well, that little harder might come a lot easier to one person vs. another. It was for me in the early stages.

    Take Mali Einen — she takes no stimulant. Julie does. So, is Mali more of a superstar because she does it without? Mali has worked in narcolepsy research for 16 years at Stanford. Maybe she’s getting an extra response from Xyrem that Julie doesn’t get that allows her to do that. See what I mean?

    This really has nothing to do with “ivy league” advantages in life. It’s a medical condition. Some people survive breast cancer and some don’t even when the stage is the same and the tumor type and size is the same and there is no spread. It depends on how they respond and tolerate the treatment. If I were functioning better, I would be challenging the status quo with respect to the current treatments available, because they don’t cut it for the majority over time, and the majority are made to feel like failures because “they don’t have the energy to do what Julie does”. The truth is the industry doesn’t care — it’s all driven by money.

    Sorry if I seem annoyed, but I’ve had people comment, “she doesn’t look disabled”. You have nothing! How can I get them to take me seriously? Michael J. Fox once got on stage with no meds to show people what Parkinson’s Disease was like. That’s what’s needed to get the point across. We don’t need awareness. We need better treatments. Go look a Dee Daud — he has all the same drugs available to him, yet he’s housebound.

  2100. Sonja Hovatter on October 13, 2016 at 10:54 am

    My granddaughter, Shayla. has been recently diagnosed with narcolepsy…..we now finally have the diagnosis….and she is just starting medication and changing diet. We are committed in helping her in everyway but it does help to have support at home. Sadly, that is where the commitment ends, as her school does want her and us to “control” this disorder and do not realize that it controls her…

    Yesterday we received a text with a picture of her sleeping. We know this is difficult for the school….we have been trying for four years to finally find out. How do you think it is best to help the school understand this? We do not want to pull her out of school but this may be the only thing we can do.

    Thanks in advance for any information….we are newbies to this.

    Sonja Hovatter
    1031 Low Gap Road
    Princeton WV 24740

  2101. Feri Ascencion on October 17, 2016 at 2:15 am

    Will we ever for the full 100%? Just like will we ever accept it for the full 100%?
    Questions I struggle with too. Doing fine most days. Helping others where I can.
    Still there are those moments where it goes wrong. When doing too much for example. When you just don’t want to give in to your N.
    What should I have done to prevent myself from this? Etc. etc.
    Bad moments we all surely have and need to pass by asap.
    Luckily I can say I wouldn’t be where I am now in life without my N (and C)
    That always gets me passed any negative thoughts.

  2102. Gail Pean on October 21, 2016 at 2:51 am

    Congrats Julie!!

  2103. Ashleigh on October 22, 2016 at 3:14 pm

    Dear Ms. Julie,
    I would like to know if you will be giving out a 2016 scholarship award this year. I was diagnosed with having narcolepsy since 2009. I am a senior in high school currently, looking forward to college in 2017. I would absolutely love to apply for the Jack and Julie Scholarship. Oh, by the way, we invested in your book some years ago when my diagnosis was concluded. I found it to be encouraging as I struggled with my challenges. Thank you much!

  2104. Kelly on November 1, 2016 at 5:51 pm

    Glad you are feeling better! Self-care does not come natural, but it is the most important lesson our bodies constantly reteach!

  2105. Kathy Devita on November 1, 2016 at 8:00 pm

    I want to comment, briefly as not to put you to sleep (no pun intended). As one ages with narcolepsy and cataplexy sneaky new challenges arise. After all, even with N and C we are still only human. Your story reminded me of a recent “discussion” with my grown child, who, also being human, still has strange misconceptions of how it is dealing with N and C, and all the other complications. These include the sleep loss, time lost, social activities lost, ambitious desires and good dreams squashed, recurring nightmares, anxiety, financial woes, etc etc etc., with much damage starting at 12 years of age and going on undiagnosed for about 40 years or so. I know I don’t have to tell you. You probably heard it all, too.
    But during this “discussion” I finally yelled, “I did such a darn good job of getting thru a day, working and raising kids on my own that you have NO concept of what it took out of me, or how I really did it”!
    I don’t even know myself.
    Except I know I would have crawled to hell and back for my children and that got me to do things (often half asleep or exhausted). Alone now, except for my best pal, a little pug, there is little incentive to “do or die’ anymore.

    Make sure to enjoy your life and use your special gift as commentator. You have done amazing things to make the world “WAKE UP” to ALL the problems with this “silent” illness. Thanks again. Sincerely Kat Devita

  2106. Gail Pean on November 1, 2016 at 10:57 pm

    Great photos Julie and wonderful post. We all need to
    Listen more to Our bodies that tell us when to slow down.

  2107. karen allyn on November 1, 2016 at 11:14 pm

    You are such a great example and role model, just being you. I hope you are feeling better. Great post.

  2108. Sherry Valle on November 2, 2016 at 9:38 am

    I too work full time and try to lead a very active life while battling Narcolepsy. But when I get a cold it destroys me. It takes me so much longer to recover than most people. We must listen to our bodies, that is for sure. Thank you for all you do and for being such a wonderful advocate for us. So glad you are feeling better and enjoyed your time in Italy.

  2109. Ciro on November 13, 2016 at 6:38 am

    So proud of you! I loved the Italian clap part.. They have a different appreciation for expressing feelings. I also loved all of your photos along your journey in Italy. Great message and blog!

  2110. Merideth on November 28, 2016 at 12:45 pm

    I normally don’t comment on blog posts, but I couldn’t let this one go by me without speaking up.
    N. Leptic, what is your point/purpose here? What is your ultimate goal in writing these contentious comments on the blog of a narcolepsy advocate? I believe that Ms. Flygare’s intentions are pure and good: to educate the world about our condition, give a voice and a presence to those struggling with narcolepsy, advocate for the rights of PWN, and unify us as a community of people who share a common challenge: Narcolepsy.
    So, N. Leptic, what is YOUR purpose in your commentary here? Is it to poke holes in someone’s story? Provide data to dispute someone’s assertions? To point out someone else’s inaccuracies, faults, or flaws? To dis-unify/tear apart the narcoleptic community? To make someone else look bad? To make yourself look good? To feel better about yourself by trying to prove someone else wrong? If so, WHY?
    You may want to explore these questions for yourself, to decipher your own motivations. And you may want to find a qualified therapist, psychologist, spiritual advisor, or coach to help you through the obvious struggle you are having, and that you are so blatantly displaying here.
    I see your comments here as a desperate plea for help, by someone who is in a lot of pain, as a result of the inherent struggle that comes from living with narcolepsy. But please know that, prior to reaching this more “high road” conclusion, my initial (less enlightened) assessment of your commentary was this:
    “Wow, this is someone with some MAJOR psychological issues, to be posting such negative comments on the blog/website of someone who volunteers her own precious and valuable time and energy to HELP those with our condition. That’s pretty friggin twisted. Is this person jealous or something? What are they trying to do here? Man, that’s messed UP!”
    Your comments come across as contentious, malicious, mean, rude, and, quite frankly, just plain JERKY.
    If you feel the need to make negative comments, do it somewhere else, please. And I implore you to get yourself some professional help in order to more appropriately deal with your frustrations regarding your condition.
    Ms. Flygare, I commend you for the grace and tact with which you responded to this individual, despite their glaring negativity and total lack of ability to “play nice in the sandbox.” You could have easily chosen to delete this person’s inappropriate and hurtful comments to safe face on a public forum, but you didn’t. You left them for all to see. Please know that N. Leptic’s comments speak to the quality of N/ Leptic’s character, and your comments and actions speak to the quality of yours (in the best way). I am thoroughly impressed by the high-road and mature way you have chosen to conduct yourself here. Kudos to you, and MAJOR props to you, sista!
    For all of us who live with narcolepsy, I wish us less struggle, more compassion, more understanding, more unity, more ease, more grace, and more love.
    With gratitude,
    ~Merideth~

    • SleepingBeauty on December 21, 2016 at 6:55 am

      The wording of N.Leptic’s post sound suspiciously like someone who used to post on the Narcolepsy Network message boards named Idiopathic Hypersonic. I strongly suspect they are the same individual, as he has made almost identical statements about Julie being an “outlier” as well as other negative comments about her and Mali Eineen. He had to be reported numerous times to the moderators because of how he treated other users, so thankfully he no longer posts there hardly at all. In one instance a mother was looking for information on how to find a doctor for her narcoleptic son and he responded “They are all useless, darling.” Ugh. So yes, he is a very angry and bitter person who harbors much jealousy toward narcoleptics who fall on the higher-functioning end of the spectrum, even in some cases going as far as to question the validity of their narcolepsy diagnosis.

      Let’s stand up to bullies!!!

  2111. Candace on November 29, 2016 at 4:31 am

    I read your book but it wasn’t for me it was for my son. He was diagnosed at age 9. I hear what N. Leptic is trying to say. I hear the frustration. He/She states”I’m sorry Julie, you meant well, but you’re inadvertently perpetuating the same stereotype that “if you only tried a little harder” to push through the sleepiness/fatigue/exhaustion … etc.” I hear this so much for my son. “Well if you put him on the proper diet or to bed earlier…a social worker told me “maybe if you reward him with treats he would stay awake in class.” It gets frustrating to hear. He has been on xyrem since age 9 and off stimulants since age 10. They made him shake and unable to draw. They made him think he had bugs crawling under his skin. They made him want to try and jump out of a moving car and out of a window because he couldn’t take it anymore. You do post the positive which is awesome. But my son suffers completely from narcolepsy. I Seen a video of a dancer who said she had a cataplexy attack. She fell gracefully to the floor and sat bewildered and cutely shook her head. Well cataplexy isn’t like that for my son. He falls hard and his tongue protrudes and he slurs his words. His legs buckle and we have had to put him in a wheel chair at the mall while everyone stared and thought he was having a seizure. Nightly he says demons are raping him. We don’t have the functioning narcolepsy. We have the debilitating life stealing kind. Nothing he can do…naps to refresh….medications have helped. I hear N. Leptics frustration. You are very lucky that your narcolepsy is in control. This isn’t a competition on who is worse or better at this condition. There are people out there who cant share their story because they cant even stay alert or tell their dreams from reality…..

  2112. Gail Pean on December 5, 2016 at 9:43 pm

    Congratulations Julie! I am so proud of the work you have done including your book! You are a role model for all patients to speak up for their rights and needs.
    Have a very happy holiday season!

  2113. Sally on December 13, 2016 at 4:18 pm

    I told my Dr. about you and how this could help her other patients.
    When I read your story, about a year ago it helped so much. Thank you.
    I have wanted to post, but still not to the place of wanting people to know.
    I have battled this for years.
    I received my diagnosis, a little over a year ago. Today is not a good day, better than yesterday. Thank the Lord!
    I tried to work today, but ended up having to leave. May God bless you all, who struggle with this illness.
    I know my faith is strong and I’m thankful for others who have shared your story.

  2114. Sally on December 16, 2016 at 2:14 am

    I’ve had a bad week. I always push myself beyond, what I should. A day and half out of work. To see this post tonight was a blessing. It gives me more courge, to see everyone else and how they cope.

  2115. Audrey Kindred on December 16, 2016 at 7:54 am

    As someone who had been in the creative narcolepsy organizing field for a good while, your anniversary reflection left me smiling and reflecting, You changed narcolepsy a lot through your book journey. I”m really thankful, for the narcolepsy world, that you persisted. I remember the tears you describe reading through.
    Namaste to your creative flight forth,
    Love, Audrey.

  2116. Beth Parker on January 5, 2017 at 1:10 am

    Julie, sure admire your courage! I can only imagine what it must be like to take this challenge. You’ve already ‘put yourself out there’ with your wonderfbook. Sure wish I could give financial support to this marathon. The difference you’re making is incredible!! Thank you, Julie for all you do.

    Beth (Parker)

  2117. Holly Twedt on January 10, 2017 at 5:39 pm

    AMAZING what you accomplished this YEAR! BRAVO!!! THREE CHEERS FOR YOU!

  2118. Tasha Mac on January 17, 2017 at 5:51 am

    I to have Narcolepsy have had it my 46 years of life and it feels so good to hear and talk to people that are just like me and understand the things that I am talking about, I have been judged by many. And it is a every minute of the day challenge. But just reading some of the comment, really made me realize that I should get into a support group and that is what I’m gonna do, thanks to all you guy’s and girls…. Good luck

  2119. Lennis Sadler on January 29, 2017 at 12:23 am

    Hi everyone,

    My daughter was diagnosed when in the third grade. She has been given accommodations both at her elementary school and middle school. She is now heading to high school and I am not sure what I need to do to meet her needs. She will be in 9th grade this fall, and I have already started talking to the HS counselor. One of the accommodations she was given in Middle school was having her PE period waved so she can take her nap at that time. In HS however, the counselor is telling me that she will not be able to graduate if she does not take PE. They are telling me that she needs to replace PE with a 6th class so that she has enough credits to meet the requirements to graduate. The only reason I was asking for PE to be waved was so that she has that time to sleep, so adding another class will take that time away… I am not sure what her rights in this case. Can anyone share suggestions on how to go about getting her time to nap while still allowing her to graduate without having to add extra classes to her plate? I would like to be prepared when I meet with the principal, and be able to offer suggestions or examples of what other schools have done to accommodate students with Narcolepsy.

    Any help will be greatly appreciated!

    Thank you!

    Lennis Sadler

  2120. Carol on February 2, 2017 at 4:40 pm

    Thank you Julie for sharing this podcast. I have really struggled with the shame of Narcolepsy symptoms, and the confusion of mis-diagnosis, and inconclusive previous tests, so I could really relate to Ms. Suzuki’s story. I have finally begun to tell my story after 35+ years and have found it to lighten my burden and begin the healing of my negative self talk. You two beautiful people are indeed courageous and an inspiration.

  2121. AXTJH on February 19, 2017 at 6:13 pm

    Not only was it a terribly unfunny joke, but they put it across that narcolepsy is something people suffer as a result of guilt and wrong-doing which is disgusting.

  2122. Doc with narcolepsy on February 28, 2017 at 4:50 am

    I would love to know if there are individuals who had to give up the dream of having biological children due to their narcolepsy. As a physician who must do shift work, there is no option not to work (I have $200,000 student loans) or to nap during work. I was diagnosed with narcolepsy after commencing medical school so my career path was set. My husband has a line in the sand regarding the nuvigil issue: he does not want me to take any medications that could possibly pose harm to the fetus. He is dead set against IVF. My husband was less than enthusiastic about children and by the time he was willing to entertain the idea and we went to maternal fetal medicine, it was like all doors were closed, they never had a patient with narcolepsy so were puzzled and no one could give us any answers. Now my husband feels we are too old to parent (he’s older than me by several years) and I’m looking at never having any child.

    So I likely will never know motherhood. I know adoption is wonderful but there is a part of me that desperately hoped for a child made of the flaws and good points of my husband and me. I will never even get a chance to try and while I am blessed beyond belief to have a caring loving husband, there is a part of me that cries in silence and grieves. Thanks for listening. I don’t know anyone except for some of my patients who have narcolepsy and so there is no one to ever speak to about the challenges. Have a great day everyone.

    • Cal on October 3, 2017 at 2:27 am

      Hi Doc with narcolepsy,
      I so understand your frustrations and fears. I have narcolepsy and my husband and I would like to start a family. I visited a Maternal Fetal Medicine specialist today and he was very comfortable with me staying on Nuvigil through my pregnancy. I am fearful that this will have on adverse effects on our baby and I can’t decide if a biological child is the right path for me. I have dreamed of becoming a mother, but I do worry if that will come true. Even with the support of my doctor, I still worry about the unknown and would feel better completely eliminating my medicine. I would not be able to work without medicine and I am not sure if I am ready to give up my teaching career.
      I am curious to know if you have made any progress in this area and if you made any decisions regarding your reproductive future. I would love to talk to someone who can understand my struggles and fears. You are not alone, despite it feeling that way. We narcoleptics may be few, but we have to stick together to navigate this often debilitating and largely misunderstood disorder.

    • Jen on February 13, 2019 at 8:00 pm

      Hi there,

      I am also a physician with narcolepsy and undergoing IVF on my own. I’m struggling with some of the same issues (student loans being a huge one, dilemma of which meds to avoid risk but continue working). Please feel free to email me if you are still looking for an understanding ear to listen. I am learning that community is so important during this time.

      Jen
      jenowen7@gmail.com

  2123. Kris on March 4, 2017 at 1:25 am

    Go Julie!

  2124. Rebeca rabin on March 4, 2017 at 7:40 am

    Sending love and cheeribg you on for running/chasing
    after your dreams! With admiration, as ever! I’ll be thinking of you
    and looking forward to hearing how the run goes.
    Xo
    Rebecca

  2125. Myles Clark on March 4, 2017 at 9:31 pm

    Julie – I’m pulling for you. Just like when you went to Italy, and Ireland, and in every endeavor [even when only aware of it, after the fact]. I am amazed at your determination. Your perseverance. Most of all, I’m grateful for your time & efforts dedicated to raising awareness of Narcolepsy. You’ve made a huge contribution already. And, you keep on, always seeking out, and doing still more.
    I’m with you in spirit, as you run. Before people caught on to running, back when it used to be called distance-running, as opposed to marathon, I was a runner. I fell away from it before it had gained its popularity. And, now, mostly due to age, & health changes, walking & hiking serve as the replacement for running.
    Be with peace in your run. Remember that clenching other muscles only wastes energy. And mentally ‘clenching’ also only drains you, too. Take care.
    You are still respected — whatever the challenge’s result. It is ultimately the endeavor, and your willingness to embark on it. Outcomes are never fore-ordained. You accept them. That’s why we respect you.
    Run well! Run free!

  2126. Holly on March 8, 2017 at 7:54 pm

    Yahoooo! Amazing to see your determination and shwoing up as you say. You are and continue to be an inspiration!

  2127. Garrik on March 9, 2017 at 1:09 am

    Julie,

    I read your blog about telling friends when you first were diagnosed and just cried, literally and figuratively.

    Since I don’t have narcolepsy it would be easy for me to walk away and say” Well that’s life.. We all have challenges and need to deal with it”.

    A good friend of mine was diagnosed with narcolepsy and cataplexy a few years ago. Over this time I have tried to be supportive for him.

    But sometimes I feel so frustrated and inadequate being his friend. I try to see the world from his viewpoint not mine.. There’s nothing I wouldn’t do for him.

    So Julie, and to any others who live with the daily challenges of narcolepsy….What can I do to be the best kind of friend for you?

    Thank you
    Sincerely

    Garrik

  2128. Laura on March 9, 2017 at 6:45 am

    Well done, Julie! I’m so impressed!!

  2129. Gail Pean on March 9, 2017 at 1:25 pm

    Fabulous short film and effort!

  2130. Lexi Young on March 16, 2017 at 1:27 pm

    Hi! I’m Lexi, a senior in high school in Atlanta. I’m doing a project on narcolepsy, and for our project, we’re supposed to interview someone with narcolepsy. I’ve read a lot of your blog posts, and read your article in Medium titled “10 Shocking Things about Narcolepsy that the Media Doesn’t Mention.” I’m amazed by the work you’ve done with Project Sleep and I wanted to know if I can ask you a few questions via email. Thanks for your time and I hope to hear from you soon.

    Sincerely,
    Lexi Y.

  2131. Deena on March 18, 2017 at 5:02 pm

    This scholarship opportunity literally brought me to tears upon reading it. Diagnosed with narcolepsy in the 4th grade I have managed to complete undergraduate school and am trying to go on to complete my masters. More importantly I am a single mother now with a sophomore diagnosed with hyper-somnia and is facing the same challenges as I did . He has excelled beyond all conceivable expectations 3.9 GPA dually enrolled in high school and college and star athlete and all around good kid. We had to fight for him for every inch of it. thanks for what you are doing.

  2132. Tara on March 30, 2017 at 11:54 am

    I came across your website and it struck a lot of emotions ( I’m sitting which is a good thing)! I am 41 yrs old and have finally decided to seek the help for my undiagnosed Cataplexy and Narcolepsy . Ive know Ive always had an issue; but hid it well from family and friends. Its starting to get worse as I get older and the daily struggles of just life in general; time for someone to help me figure this out, no more hiding! I am curious of some of the medications or life changes that I may need to seek out. I have a Dr apt coming up and I plan disclosing all that I have been hiding. Thank You for your personal stories, glad Im not alone ! Any suggestions are greatly appreciated…

    Thanks Again
    Tara

  2133. Vid on April 4, 2017 at 11:39 pm

    Perfect description of the burden of sleep and how helpless you are. My professors assumed that I am very disrespectful to sleep in their lectures and warned me. That was many years ago. Even now during the day it hits me several times, some days more than others. It is just not the sleepiness after a big meal like everyone says they “totally understand”. They way your eyelids are pushed down and the struggle to keep it open…it is hell. I have not sought treatment simply because I cannot afford it and I am afraid it may open a can of worms that I am not prepared to face. Once again thank you for describing how you actually feel. Your words are touching.

  2134. ND on April 6, 2017 at 12:28 pm

    So I don’t normally post in the comment section but I felt like I needed to add something here (like there isn’t enough opinions to go around right? ;D ).
    My experiences are from being, not a patient, but working closely with patients in a ongoing study on narcolepsy. I write ongoing because even if we have collected all the data, we have yet to analyze all results. Anyways, my experience with these patients, all under the age of 18, was that they varied wildly in symptom and ability to manage symptoms. Some were barely on meds, and barely affected by the disease, while others were taking several and still not able to function. This is actually not so strange when looking at other neurological diseases, which show the same patterns among patients and is likely because there is variation between everyone, even among healthy people and this is natural. I sense a lot of frustration from N.Leptics, and I hear you. Not responding well to meds is disheartening enough without feeling like you are being judged by others who are “Managing” their disease or who you feel are comparing you to those who are. I think part of the problem here is that you are perceiving a judgement that may not (at least not entirely and certainly not from the author of this blogpost) be there. That doesn’t mean that there isn’t anyone judging narcoleptics or trying to put the blame of not being able to manage on the patient. There is plenty of that, hearing from the patients I met has given me a sense of how unfair it can also be in terms of social support. Some students had support of family, friends and school while others were being bullied or had teachers that wouldn’t believe their diagnosis. Stuff like that matters and raising awareness about the disease also helps all of you, being informed of your disease make people less likely to judge. But also if the general public are aware and informed they are more likely to advocate for it, donate money and government is more likely to spend money on research to find a cure. Instead of leaving the research up to pharmaceutical companies.

  2135. K on April 10, 2017 at 8:45 pm

    That’s good to read that narcolepsy hasn’t hurt you in terms of partners/romance. I’ve experienced the opposite but I’m male and don’t make much of a living due to this silly condition. Whatever. Just good to hear someone is doing well.

  2136. Diann Newman on April 27, 2017 at 1:41 pm

    Watching your video is pure joy! Bravo on this great accomplishment!!! Lots of love,
    Diann

  2137. Bobbi Jo French on October 20, 2017 at 12:26 pm

    Julie,
    I thank you so much for making this explaining about Narcolepsy so much easier. Also in the correct words. It’s so hard for me to think of the right words to explain it.

    You are my inspiration..

  2138. Matt Baker on October 23, 2017 at 10:57 am

    Hi there Julie, is there any chance of seeing a copy of your presentation online?

    M

    • julie on February 20, 2018 at 10:22 pm

      Hi Matt, thank you for your question on my blog. A few of my presentations are online, they are each a little different, so please note that these were created for particular audiences, but still pretty good to get a sense of my speaking style, content, etc. https://youtu.be/MXTd8xd_f8s and https://youtu.be/LRd1jVx5eVY.

      Also, please note that Project Sleep runs a leadership program to train people on effective communications via writing and speaking engagements and we will be training a new class over the summer of 2018! http://project-sleep.com/rising-voices-of-narcolepsy/

  2139. lisa on October 25, 2017 at 1:49 am

    Well>>> first off, yes in Canada we have cases of narcolepsy related to the vaccine. My daughter now, to this day suffers tremendously. What has been released here isa false idea that their are no cases. It’s sickening to me! I watch my daughter who was once very productive, a sports enthusiast and high honours student make her third year of an attempt to complete grade 11 classes. Hers was related 100% to the vaccine. It started right the week of the vaccine. She had hers in october 2009. Whats interesting here is that the canadian government stopped administering the adjuvant to all children November 1, 2009. Lucky her. Beat the luck and got the special Narcolepsy gift.

  2140. Cassie MacMillan on November 6, 2017 at 3:39 pm

    Hi Julie, I am at work using all of my will power to stay awake right now and I typed in “narcolepsy is killing me” into google as I’ve spent countless hours searching for help for my REM sleep that at this point I do feel is going to kill me – self inflicted or a bad accident. This picture of you in your car is so familiar to me as I have explained to so many professionals and ppl that I have to go nap in my car at work and before my eyes are even closed I am dreaming. The same thing happens to me every single night of my life for the last 5 years and 2 months. What medication are you taking? I am currently on Methylphenidate(Ritalin) that does help me with my day time sleepiness without having many side effects but Im so desperate for something to stop my REM sleep at night. I dread going to bed at night while at the same time can’t wait to crawl in and shut my eyes. I feel as though I have severe insomnia while I’m asleep. My brain fog is the worst its ever been. Do you have any suggestions for what medication can help me suppress my REM sleep and any suggestions of professionals I could reach out for help to?? Every single person I have gone to seems to have very little knowledge of this sleep disorder and its almost like talking to a wall. And as you know talking to friends and family for support can be more frustrating then helpful as no one actually gets it. Anyways I’m sorry for the long message, any suggestions you have would be greatly appreciated! Cassie

  2141. John Jesse Patterson on November 26, 2017 at 5:26 am

    Hi Julie ive had narcolepsy and cataplexy ever since early junior high 43 know thought I was the only,one at times but im
    But not not take medication for it still have systoms live in salem va

  2142. Tracey on November 30, 2017 at 8:14 pm

    Julie, do you set an alarm or does your brain/body wake up automatically? Thanks!

    • julie on February 20, 2018 at 10:13 pm

      Tracey- great question. I let myself wake up naturally. I never sleep longer than about 30 minutes if it is during the day. If I push my nap off into the evening hours, it can last up to an hour and I don’t set an alarm then either. However, I’ve heard that some parents limit their children w/ narcolepsy to take 20 minutes naps for more successful transition back to wakefulness.

  2143. Alexandra Carr on December 19, 2017 at 6:56 am

    Hi Julie
    I was wondering if it was open to the class of 2018 Seniors. I was Diagnosed at age 16 in my junior year and had been suffering with narcolepsy since the beginning of my freshman year in 2014. Is the scholarship still open. Thank you for spreading the word. It makes me feel like I’m not the only one who’s out there with this disability.

  2144. CJ on January 16, 2018 at 4:30 am

    Hi Julie!

    I was wondering if you had any advice on how to talk to your boss about having narcolepsy with cataplexy. I graduated college, got a job, and was diagnosed all around the same time. I am not sure how to bring it up or what to say to my boss.

  2145. LJ on January 21, 2018 at 11:02 pm

    Dear Julie,
    I really enjoy your website and blog. I was diagnosed with narcolepsy in 2005, but had onset of my symptoms a few months after I had a major kidney infection in 1997 (I was 17). It was no surprise to me when the research began to indicate it was an autoimmune condition!
    I could chat all day about how enlightening your blog is and how many times in reading your posts I’m struck with the “oh, I’m not crazy!” Feeling! However, I wanted to ask you specifically about your experiences as a narcoleptic distance athlete. I do half-Ironman distance triathlons and since all of the few narcoleptics I’ve met are obese, I’ve been hoping to connect with another “recreational athlete” (i.e. a finish – not a rank – is a great personal best! Lol!). Specifically, I find that any training injuries I get (usually soft tissue tears and sprains) never heal properly, no matter how much physio and rehab I do. I was wondering if it was related to the fact that we (meaning narcoleptics) don’t really go into (or at least don’t stay in) REM, which of course is where most healing of injuries take place. I tried to mention this to my neurologist, but he didn’t really seem interested. Then again, when I ask him how many athletic patients he had, he said he didn’t have another patients who were fit. Also, have you noticed abrupt weight gain after you finish a race and taper off the training for a bit? I’m trying to get more information on the link between narcolepsy, lack of orexin, and inability to develop brown fat. Any thoughts or research that you’re aware of?
    I’d love to hear from a fellow athlete!
    Thanks again for your brilliant writing and advocacy!
    Cheers,
    LJ (Laura-Jane) from Canada!

  2146. Geraldine on February 20, 2018 at 6:16 am

    Way to go Julie! Congratulations and Thank you for being so inspiring ?
    You and me share same diagnosis and same diagnosis date.

  2147. Sydney on February 20, 2018 at 6:07 pm

    Thank you Julie for all you do! And especially for being so candid and allowing us to follow along with your journeys. Many people do not share their struggles, only their triumphs. When you share your struggles and your frame of mind with us, it helps us to see that our dreams and goals can materialize step by step, making them seem more doable and way less daunting! I haven’t had narcolepsy for very long but I have followed you the almost the whole way. You inspire me to dream big, when narcolepsy tries to tell me I can’t. Best wishes in your exciting new endeavor. I can’t imagine anyone better suited for the job!

  2148. Danny van Leeuwen on February 20, 2018 at 7:36 pm

    I support you 100%. Your sad stories are the fires that drive you. I like that you’re making them your friend because they are.

  2149. Elena on April 2, 2018 at 9:31 pm

    Yes. This is me!!! I’m in college but have had this problem my whole entire life with daytime naps. My roommates even thankfully, know not to take it personally and give me space for the first 30 minutes post-nap. I need it. I wake up as a beast! My doctors had told me it’s normal with narcolepsy.

  2150. Melissa on April 21, 2018 at 10:30 pm

    Too cute! I rather have “REAL” foot massages than hallucinating about them lol! Sheesh I LOVE massages! I enjoy giving my clients massages also! Best thing EVER! ❤

  2151. Kathryn Harwood on May 2, 2018 at 2:43 am

    Yes. I try to have a sense of humour about the narcolepsy. I am 79, so was diagnosed when I was about 35. So I have had a lot of laughs and a lotta “failures”.
    I don’t know how my 3 children survived, but they did.
    I like to add up all the strange places I have had a nap. When I skied, I napped on the stretcher in the ski patrol hut. You surely find out who are your true friends. I am not all that religious but if I was I would think that God has a sense of humour. “Let’s give her a high IQ but also narcolepsy. See what she does with that.” I was lucky to have had a support group in Toronto. I sometimes think it is a gift, allowing insight into an unknown realm. I believe that some shamans have narcolepsy. We can easily go into an alternate reality as in hypnagogic nightmares.

  2152. Jenny on May 2, 2018 at 3:21 am

    Julie, I love this. I agree, we are badasses. I say we’re superheroes. I love the part about singing the negative self-talk and sending it on it’s way. Ugh, I negative self-talked for decades and then wondered why my kiddos were so down on themselves??‍♀️
    One thing we do that helps is to remind ourselves and each other, over and over, we don’t owe anyone an apology or an explanation for our narcolepsy or our needs. Like you said, some get it, some will slowly and some never will. March to our own drumbeat, even when it isn’t understandable to others. Gear blog, thank you!

  2153. Joseph Brinley on May 2, 2018 at 12:37 pm

    Julie you are truly an inspiration for the rest of us! I enjoyed reading your book and meeting you at the Hypersomnia Conference in Atlanta a few years back. I agree completely with this post we PWN have too many people looking down on us as it is, we don’t need to be one of them.

  2154. Lee Ann Gerleman on May 5, 2018 at 2:52 pm

    I love your site here. I’m 65 and have probably had symptoms since high school. I have about twenty movies I have never seen. The music starts, and my head plops over. I wake up at the end.
    When I was diagnosed, I was sitting in the doctor’s office while this old doctor with zero bedside manners looked at my sleep study. I blurted out, “And please don’t tell me if I lose weight or exercise, I’ll be more awake.” He didn’t even look up, he said, “People with narcolepsy have difficulty losing weight. they have a glycogen storage problem.” Huh? I thought I had apnea. I struggled with dexadrine for awhile, tried ritalin (worthless as water), provigil, etc. My first night on xyrem, I slept all night, and at 7 am, I popped out of bed wide awak, ready to stay up.
    Thinking about school. I went through nursing school, sleeping with a highlighter on my pages of my books. with little yellow squiggles down the page. I graduated with a 98%. I always wondered what I missed.

  2155. Danielle on May 11, 2018 at 8:17 pm

    Ok so what progress is being made? What resources have you brought about for Narcolepsy? Where can we sign up for events that’s aren’t promoting another drug or well a person? What is your advocacy actually doing for us & the illness itself? Its in the public and media briefly year after year and your doing all of these great things state to state….but what tangibles are there? What has changed? Have we gained any footing in getting anything changed, improved or even thought about just getting narcolepsy recognized as an actual disability ??? No offense but what are YOU doing for us? Have you petitioned for any changes in SS? Is that even a road you’ve looked down? 2013-2018 you’ve been at the forefront… of what??? I still cant find a support group or any help medically financially or scientifically ….. progress shouldn’t be that slow with how many of us there are standing behind you.

  2156. Judy Njoki Njoroge on May 24, 2018 at 8:49 pm

    Julie, I’ve come to love you coz you’ve become of help when I didn’t understand what was going on with my daughter. You’ve taught me a lot so now I don’t believe in witchcraft or sleeping sickness. Thanks so much. She’s now believing in herself. She’s in high school.

  2157. Alexa on June 11, 2018 at 4:41 pm

    I know this article is a few years old, but I just wanted to say thank you so much for posting it. I am so happy I found it. My longtime boyfriend has just been diagnosed with Narcolepsy after a long road of misdiagnoses and not knowing what was wrong. Honestly if I would’ve read this when it was posted it probably would’ve saved us a lot of headache! Please keep up the good work!

  2158. Carol on June 27, 2018 at 7:24 am

    Julie, thank you for the work you do. What a nice trip!

  2159. Kathryn Harwood on July 12, 2018 at 5:20 pm

    Hi Julie, Your work is wonderful.
    I was diagnosed with narcolepsy 40 years ago. I did all the sleep tests at Sunnybrook Hospital in Toronto. I was on medications for many years but chose to accept a lifestyle without them-mainly because of the side effects. Recently I discovered Vyvanse and have been enjoying a renewed alertness without side effects. (Yay) I am contacting you to ask you to urge your narcoleptic followers to keep their original records of sleep tests. I didn’t and I saw 2 doctors here in Canada before I found one who took my word for this condition. This drug can still be sold as a street drug. I just didn’t see the point of another sleep test with its cost to the medical system. It is paid for here but may not be in the USA. Wishing you continued support from everyone for your work. Please let me know if you are ever coming to Vancouver or Victoria. Would you mind letting me know that you have received this message.

  2160. Melanie on July 16, 2018 at 3:52 pm

    Ugh, I needed this. I struggle daily treading the thin line between self-compassion and self-pity, often not knowing where one ends and one begins. Am I being kind to myself, or am I making excuses for myself? Is it EDS or laziness? My relationships have suffered, and I unintentionally dropped out of college with barely a handful credits to go, but I know I’m trying. I think I need to start including this blog as part of my self-care.

  2161. Bernadette Winslow on July 16, 2018 at 10:26 pm

    Thank you…for providing something my family might read and consider that Narcolepsy is real, not my way of getting attention.

  2162. Evan on October 2, 2018 at 10:56 pm

    Congratulations!

  2163. Gladys Viddaurri on October 5, 2018 at 4:09 am

    Dear friends, family and CO-WORKERS, please leave the laughs and jokes to the narcoleptic person. Narcolepsy can strike some as being funny at certain times. It is not funny or amusing! Oftentimes it a struggle.

  2164. Peter Conley on October 16, 2018 at 1:31 pm

    We need to shout this from the mountain tops! I find so many other people with narcolepsy to be hard on themselves. To have a negative self-talk that doesn’t serve them. I think fostering this self love is so needed!

    Thank you for being a guiding light Julie 🙂

  2165. Peter Conley on October 16, 2018 at 1:36 pm

    Your book has helped me more than you’ll ever know. Thank you so much 🙂

  2166. Sarah on October 22, 2018 at 8:40 pm

    Julie,

    Thanks for sharing your journey. I have read your book and it was wonderful. I had my sleep study last Thursday and went into REM sleep 4 out 4 naps. I have been telling doctors for years how tired I am. Scared I am, but hopeful at the same time.

  2167. Dana Aluf on December 11, 2018 at 3:53 pm

    Mine:
    * Telling a joke
    * Laughing in the evening from stupid things when I’m tired.
    * Heat (same as your “3”).
    * Cute things like babies or puppies, even their smell…
    * Surprising things:
    See someone I know, but not in the “right” place (like friend from work, at the park, good news, warm words from my kids, etc.).
    * When I need to catch something (like a ball), when somebody runs quickly to me…

  2168. X_anon on December 13, 2018 at 4:34 pm

    Hi Julie, I was recently diagnosed with NwoC/type 2 and ever since there was even idea of having narcolepsy, I started extensively researching the subject. I just finished a presentation about it also. I found your website and app to start letting my friends and family know what was going on, how to explain it. I wanted to ask a question though, something I’ve noticed all my life. As we all know REM and hallucinating happen when awake. Is it possible though, having a dream when actually sleeping, feels so real that one actually thinks it’s happened is a symptom? Let me explain further with this mornings experience. My father comes almost every morning to make sure I’m awake for work. I remember hearing him tell me I needed to take my puppy out to use the bathroom. I swore up and down I already did, and told him so. He then asked me when??? And it was like, as soon as that question came up, I snapped out of it and realized it was a “dream”. Is this something normal in everyone? Or is it more exclusive to PwN? I’ve experienced situations like this more than 3 times a week (estimating based on memory) for as long as I can remember. I don’t typically have hypnagogic or Hypnopompic Hallucinations, although at times I do have auditory hallucinations- someone calling my name (no one is there) or a knock at the door, or even just a loud bang. Help.

    Thank you by the way for being a voice for many.

    • julie on December 28, 2018 at 9:35 pm

      Hi there, Thank you for your kind words about my efforts and your great question regarding hypnagogic hallucinations. Your experience is very common for people with narcolepsy to have thought that they did something or had a conversation with a loved one and then to take actions (once they’e really woken up that reflect this) like you telling your dad that you’d already walked the dog. Then to quickly realize that that original thing maybe hadn’t happened. It can be really confusing. I imagine that people who don’t have narcolepsy might experience something like this on occassion, but it is likely something that happens more frequently to you as a PWN. Sending wakefulness and big smiles your way, you are an amazing person overcoming adversity daily! Gratefully, Julie

  2169. Denice R. Brooks on December 26, 2018 at 12:58 pm

    Congratulations! I have listened to your audiobook and I really love it so well, my friend was right that I should try the Wide Awake and Dreaming audiobook and it never failed me, I’m so worked up for your next release. Please let me know when will be the next audiobook.

  2170. Katie G. Nelson on January 2, 2019 at 5:00 pm

    Great update Julie. It gives many of us hope to read that promising Narcolepsy research is underway. Thank you for giving us a voice and fighting the good fight!

  2171. Gerald on January 11, 2019 at 4:48 pm

    Julie, I have N. Was diagnosed 4 years ago. Know I have had it since knee buckling in early twenties. For 6 months before being diagnosed I started collapsing when laughing. While taking all kind of tests for heart and head problems my pastor said it was probably spiritual. I knew it wasn’t. But after taking meds people know that I am more out going and my filter isn’t as good. I am too honest.
    I’ve worked on it and am a little better.
    I still believe in God and Jesus helps me through all things . And I am afraid I was one that said at times that people on anti depressants were crazy or just looking excuse. But without anti depressants or stimulants I couldn’t function. Some people can’t live without insulin. And I wouldn’t be as productive without Anti depressants, stimulants , or something to help me sleep.
    I am now 60 and I wish I knew what was wrong with me before. But Jesus is always there to help when I let him. And I have had a good life when I didn’t know what was wrong and a good life after. Thanks for your information on the internet.
    I hope some day all people realize that life is better when we do God’s will. He made us all different. And He wants us to depend on him.

  2172. Cathy Hiebler on January 26, 2019 at 3:20 am

    Julie, your advocacy is commendable. I have been dealing with narcolepsy/cataplexy for over 58 years. I am now 70. Typical of that time, I saw a litany of doctors and went for about 15 years without help. Many neurologists have no clue about our disorder. Lucky for me, I am married to a wonderful and understanding man who sent me the link to your blog. I am heartened by the work you are doing. Keep it up!

  2173. Charlotte on April 10, 2020 at 10:39 am

    It’s really inspiring! I am struck by such kindness, openness, and unselfishness of people. Let it be just a small thing, but great support.

  2174. Charlotte on April 10, 2020 at 10:50 am

    Is there a recording of the performance and can it be seen somehow?
    I recently found your blog and I am very interested in your activities!

    • julie on January 22, 2021 at 7:56 pm

      Thank you, Charlotte! The TEDx Talk ended up being cancelled due to COVID-19. Hopefully there will be another opportunity in the future. I do have a lot of other presentation videos on my YouTube page!
      Gratefully, Julie

  2175. Chelsea on September 18, 2020 at 1:39 pm

    You are correct. Those of us who have been properly diagnosed with Narcolepsy are fortunate. Even if the meds don’t work as well as we’d like or need, at least we know what we are dealing with. And it’s not something we can just power through or eat/exercise away.
    Thankfully for you and others like you (although there’s really not *anyone quite like you*) more people know about narcolepsy. Knowledge will lead to recognizing the symptoms and therefore, more diagnoses.
    Before now, I hadn’t considered the most common experience for those with narcolepsy is that they are still undiagnosed. It makes me sad for them. And motivates me to want to do more.

  2176. Ashley on January 19, 2021 at 1:43 am

    I’m so glad to have come across your blog as I’ve recently been diagnosed with narcolepsy. At seemingly random times my knees have given out on me but only slightly. I quickly can straighten up again and it’s never severe enough to the point of falling, but the way you described your knees giving out briefly was spot on! I’m not sure if my knees giving out could be from just the muscles relaxing or my legs getting tired, but because I haven’t found a pattern in these episodes relating to emotions or anything else, I’m still not too sure if they could be a mild form of cataplexy.

    • julie on January 22, 2021 at 7:48 pm

      Hi Ashley, Thank you for your message. This sounds like it could possibly be cataplexy. Sometimes the emotions that trigger cataplexy are more subtle, I find it’s often around communication, when I’m trying to or about to communicate something with anticipation of the other person’s response – something ironic, funny, annoying or connected to something or someone close to my heart. Also, people with type 1 narcolepsy with cataplexy often go into REM sleep during their MSLT for a long portion of all 4 or 5 of their nap opportunities. Not sure if that helps but definitely keep paying attention to these episodes and bring this up with your sleep specialist. Sending wakefulness and strength your way, Julie

  2177. Jennifer on January 20, 2021 at 2:24 pm

    Looking forward to when some of these drugs will actually be accessible to Canadians.

  2178. Paula Bartels on January 20, 2021 at 3:59 pm

    My 26 year old daughter has narcolepsy with excessive day time sleepiness. She lives on her own with a room mate and works as an RN in a hospital. I need to better understand as well as better support her and her older sister .
    Thanks
    A concerned Mom

    • julie on January 22, 2021 at 7:59 pm

      Thank you for supporting your daughter’s experience with narcolepsy. I know I’m very biased but I have heard from a lot of family members of people with narcolepsy that my memoir was a helpful starting point, and that the loved one could use the book to then ask questions of the person with narcolepsy in their life to see how their experience might be similar or different. Again, I’m biased and wouldn’t mention it but even my own mom found this useful! 🙂 Check out some reviews on Amazon to see if this might be something useful for you.

  2179. Amy on January 21, 2021 at 3:56 am

    Thank you for this post. It is a good reminder to pursue potentially more effective medications. I haven’t done any research on the ones related to histamine, but I’m curious if they would be helpful or unhelpful for those with the heterozygous comt mutation.

  2180. Kay on March 22, 2021 at 8:22 pm

    Yes! The only pleasant one I’ve ever had was recent and felt like I was getting a foot massage, no panic or fear. Just a kind tenderness. ?

  2181. Rachael Tresch on August 26, 2021 at 10:47 am

    I second Julie’s book! It was a great resource that I wish I had found earlier. I felt as though I was reading my own story! It really gave me comfort to know that I’m not alone in this crazy journey! Wishing you the best as you help your daughter navigate this disease. She is blessed to have you in her corner!
    With kindness,
    Rachael

  2182. Julia V on September 5, 2021 at 12:43 pm

    I wanted to thank everyone on this post for sharing your stories. My oldest son has suffered with narcolepsy and cataplexy since he was seven years old. You all have given me insight that doctors never could.

  2183. Bryan on September 17, 2021 at 7:18 pm

    Such a detailed breakdown. I started reading and then thought, hey, this show sounds really interesting. So I’m going to have to watch it first. Then get back to your piece. Bookmarked! Thanks for sharing your thoughts!

  2184. Magnus on November 23, 2021 at 9:50 am

    I first experienced a phantom foot massage when I moved to a new house just after graduating high school. The very first night there on an air mattress (new bed hadn’t arrived yet) I had what I later learned is “sleep paralysis”. For a year or two I would get what felt like foot massages regularly when I started to wake up.

    Then one day the sensation moved upward (like I could feel this “presence” move upward) to my solar plexus area just above my stomach. It felt like someone was pressing on the area somehow, but it resulted in some kind of very pleasant sensation. I think my breathing was affected too, but it kept pressing in waves and each time it would press harder I would feel this incredibly pleasurable sensation in that solar plexus area (no not like sex, but almost as good in a way). I actually wondered if I had a ghost in the house, but I though foot massages? OK. But this was getting weirder.

    Now it would start at my feet momentarily and then quickly move upward to the solar plexus and eventually just start at the solar plexus and skip the feet area. This went on for over a year. I’d sometimes get this 4x a night. I was disturbed, but it felt good so again, I couldn’t get too upset. I did notice I couldn’t move at some point along the way (the paralysis part), but if I concentrated really hard I could slowly move my left hand and it felt like it was in slow motion and then would suddenly accelerate and BAM, I was out of this sleep paralysis mode (but I still didn’t know what it was at this stage).

    Then one night, it started at the solar plexus area, but then suddenly I felt that “weight” move upwards really quickly across my torso and into my head. I immediately heard this high-pitched voice audibly in my head or around me that reminded me of a leprechaun kind of voice from Darby-O-Gill or something. It said, “Heidi Heidi Ho! Heidi Heidi Ho!”. My Lhasa Apso I had since 3rd grade was named Heidi and we used to sometimes call her Heidi-Ho.

    OK, that FREAKED ME OUT! I was going to college in the 1990s and living in a shared house with my mother (me downstairs; her upstairs). I ran upstairs and woke her up and told her all about this stuff going on for years because that scared the heck out of me. I thought maybe something was trying to possess me or something. While talking, the downstairs TV suddenly turned itself on and started changing channels. This was before “smart” cable boxes and the TV and cable box were on different frequencies. I had the TV change channels before on its own a few times over the years, but I assumed it was some kind of RF leakage (even though the family room downstairs was 2/3 underground and my bedroom 4/5 underground just behind it with no windows).

    What could I do? Nothing. I tried sleeping in the guest bedroom upstairs for a few nights and it showed up there as well so I figured there was no point. I didn’t know if moving would help, but it wasn’t a very realistic option. I still hadn’t read about sleep paralysis. I had early Internet by 1996, but it didn’t occur to me to look this up until maybe 1998 or 1999.

    I got used to these occurrences. It would sometimes stay on the solar plexus and other times move to my head. I never heard a voice again in my head like that, but I did hear other things when it moved there like machine noises or banging sounds.

    Then one day I read about sleep paralysis on the Internet and thought, boy do I feel stupid. I stopped worrying much about it, but if it got too weird, I’d still try to move to wake up. Then one day in 2004 a few years after starting my first job, I was still living there (my mother eventually moved out when she got remarried and rented me the house until I decided whether I might buy it, but ended up getting transferred in late 2005 to another job location in another city 50 miles away and bought a house there instead), something EXTRA WEIRD happened.

    I woke up and found I could move, but the room felt weird like I was in sleep paralysis just the same. I heard a voice that sounded a bit like Charlton Heston for lack of a better comparison moving around the the foot of the bed in an arc shape that passed right through the wall from the laundry room and out the side wall but without changing in sound like the wall wasn’t there. I saw nothing. The voice said something about “The storms are coming” and started listing dates (which of course I can’t remember). I saw a map on a screen hanging in mid-air in the room in black & white (kind of like the screen in the video “Pressure” by Billy Joel from the 1980s on MTV) and I saw what looked like a map of Texas. A few weeks later on Christmas Eve it was snowing in Texas in that area (I think at the time it was the first time in like 18 years or some big number down by El Paso; it seems like since then they’ve gotten a lot of snow storms on and off) and so it kind of made news headlines. Meanwhile, on the other side of the world a Tsunami was hitting the Philippines (Christmas 2004). I really thought about that voice and wondered if that was one of them.

    Fast forward to Apri 28th, 2005. The voice returned. This time it said, “In 1686 days, prepare for the worst” and walked off again (that day on or about Dec 9th, 2009 came and went and nothing seemed to happen that day at all, but a couple of weeks later I got injured and it was bad, but the time is off so???) I never heard the voice again. I also have not been paralyzed when I get “sleep paralysis” anymore. It happens far more rarely than it used to, but when it does, I can move and IF I move, I snap out of it fast so if I want to observe, I have to lie still.

    Since then, I’ve heard far stranger things compared to just noises. I’ve heard music playing on a different floor of a house I was staying at clear as day as if the walls and floor weren’t there (and when I woke up, of course nothing was playing and it was the middle of the night). I heard a voice that sounded a bit like one of those talking “snake” voices on Harry Potter say “Thank you” 3x in my ear after I could “feel” it walking over through my bed as if the bed wasn’t there. It was talking to “someone” else just before that, but I couldn’t make it out (I used to hear voices when I woke up for years and years like that or when a noise maker device is playing, it sometimes sounds like that to me when I’m just relaxing, not even asleep.

    I’ve also seen “pixies” (for lack of a better description) made of red light fly through my bedroom when I lived in that house two nights in a row and never before or again afterward. That bedroom had no windows and I had a blue nightlight so I wouldn’t trip. These “pixies” were RED and I wasn’t asleep. I had just lied down and they flew into the room and one seemed to notice I was tracking it with my head turning. I can’t see without glasses very well and it looked like two red “orbs” glowing in the room flying along. The one that seemed to notice me, flew over right in front of my face (all of like 8 inches tall or so) where I could see it clearly. I stared in shock at it. It appeared to be made of red light, but had slight variances in the shade of red and had what looked like a body shape and a head, but I couldn’t make out features because it was all red light. It floated there for maybe 5 seconds total and I just stared dumbly at it. However, it seemed to cock its head slightly for a moment like it was puzzled at how I could see it or something (at least that’s what went through my head) then lost interest almost instantly and flew off through the other wall (where it left the room was the backyard about 4 feet underground). I believe the other one that was with it went straight through to that same point without stopping. No, I wasn’t drinking or using drugs. The next night, the same thing happened, except there was only one and it didn’t stop. I never saw one before or after again.

    By now, you might think I was starting to question whether this “sleep paralysis” is actually all just in my head/dreaming because some of these events didn’t involve sleep. Besides, more “proof” would come soon that I seem to be in touch with more than just dreams.

    My grandmother had an issue with her lungs in her 90s and they had her in the hospital sedated. My step dad had died a few months earlier and I had two strange dreams. In the one, my mother got a call from her brother on the den phone at her house that her mother had passed away. The next dream I saw my step dad standing in her kitchen (houses usually look weird in my dreams no accurate, but this looked completely accurate). He was young looking like he was in his 20s again and had a beard like he did back then. His mouth never moved, but I heard a “thought voice” in my head that said my grandmother’s soul had left her body already and her physical body would expire in a week’s time.

    I told my mother she better go visit that time that week. I thought, Ha! It can’t happen like that dream on the phone because she wasn’t at home. She visited at the hospital and all seemed well and the doctor told them they would wake my grandmother up in a day or two as they think whatever problem she was having was about over. My uncle and aunt had already had lunch and the rest of the family went out to lunch at a restaurant including my mother. She then got a cell phone call from her brother that her mother had passed away (exactly like the dream, but in a different location instead). If that was two coincident dreams, that’s one heck of a coincidence!

    Meanwhile, the sleep paralysis events had slowed way down after moving where it was only a dozen times a year or so instead of as often as 4 or 5 times a night previously (although sometimes weeks or months would go buy without an incident too). I hadn’t had an incident in over a year and then just briefly.

    Recently, however, the foot massage thing returned a few days ago, but it went on like all night long. Every time I was dreaming or even semi-conscience I noticed my feet being massaged. At one point, I could feel what felt like hands grasping my hands as well and starting to rub them. So strange. I’m not sure what to make of it.

    But I had a dream when I was around 4 years old that I was walking in what looked like a mall (maybe 8-12 years old or more, definitely not 4 years old) and I got into this machine. Tubes came down and attached to various parts of my chest and body. I saw view outside the machine and there stood my mother waiting and I came out as a baby and she was holding Johnson’s baby shampoo. I woke up. When I saw The Matrix in 1999, I almost freaked out at the scene with Neo waking up in the tub with the tubes attached. In my dream, the tubes were attached to my body, but it looked more like an MRI machine with a table that pulled you in, but it looked like a conveyor belt when I came out the other side as a baby. That has had me wondering for some time now if perhaps we’re not really in the “real world” but some simulation of one.

    I was driving home from work one night around in the fall/winter (forget which month, but maybe November or December) and there was a car riding my bumper behind me and all the sudden ahead I saw 4 deer crossing the freeway. I was doing maybe 70mph and I knew if I hit the brakes the guy behind me might just plow into me, but I had no choice. Even so, one of the deer stopped and looked right at me and there was no time to stop, just slow down a bit. I slammed on the brakes. Suddenly, my foot wasn’t on the brake, the car behind me was a 1/4 mile behind me and all the deer were already on other other side of the freeway (going the other direction). It was as if someone hit PAUSE, moved the deer and car and then hit unpause again. It was instantaneous. To this day, I can’t explain what happened there, but that didn’t feel like guardian angels. It felt like someone stopped time, moved them and resumed in an instant. I keep thinking the only reason I can figure someone would interfere is if in that moment that deer was going to kill me and whomever is in control of this world/reality/simulation, be it “God” or some controller dude in a Cryo Prison or education program or whatever this world is saw I was killed in the crash and they didn’t want me dying at that point in the simulation for whatever reason and changed what happened and figured I’d just sound crazy if I told others.

    You can decide (if you’re even real; I may be talking to the computer program itself). The Gnostic Christians believed we are in a false material universe and The Matrix was partly based on Gnosticism. Maybe such things are hints to tell us where we’re at because even in the Bible, it says and you will find (The Book of Thomas version says, “Seek until you find and when you find, you will become disturbed and rule over “the all”). It’s all very mysterious sounding, but then when you stop and look at some of the strange things that occur and sometimes how coincidences are too unbelievable or unlikely, it seems even stranger.

    There’s a video of a pub in London, England on YouTube. For this pub, there’s only one video of it ever filmed (at least last I checked). I was in England in May of 2016 and that was the ONLY time I’ve ever been there my entire life and I and the person with me are the only other people in this pub other than the bartender when this couple walks in filming. I found out two years later while looking up pub videos I was in this video, the only one of that pub ever filmed in all of history (well the Internet anyway). What are the odds out of around 8 BILLION people in this world that I would be in that pub on that day? The person who filmed it was with her husband and they were from one state away in Kentucky. They were not on our cruise ship we arrived on. The odds have to be higher than the Mega Millions lottery of this happening, perhaps in the 1 in a billion or more type category given the time factor). My dad told me at the time I should play the lottery because it was child’s play by comparison, but of course it doesn’t work that way. But it does make me wonder. I’ve had too many impossible odds type things happen in my life (usually negative, though or just weird) for me to believe in that level of coincidence. But if this really is a computer simulation, then it’s not a coincidence. It’s planned. Someone makes it happen. This whole Covid thing reminds me in some ways of hitting the natural disaster button on the old computer game Sim City. It interfered with plans I had to go back to England and more. A series of terrible events have occurred (not from the virus) since then in my family (lost my father; my mother had a stroke, my hard drive failed, my one large speaker failed, I pulled a muscle on my own birthday, several machines at worked suddenly broke and most of these events all occurred in a two week interval one after another after another. Disaster button indeed! That’s after over a year and half of this mental hell related to Covid. It’s too many coincidences. Someone’s pushing a button somewhere. God is a kid with a magnifying glass standing next to an ant hill and sadly we’re the ants!

    There’s way more, of course I left out as I could write a book at this point about the strange events that have happened in my life. I have a 139 IQ and two engineering degrees and a minor in English, lest you think I’m totally insane at this point.

    And it all started with a foot massage…. I take that back. I had one incident before that. I used to visit computer bulletin board services in the 1980s and 1990s before the Internet and there was a board called The Underground Kingdom of Shadows. It was professed to be a Wicca site. I was into D&D and mythology, etc. as a result and there was this article on there about how to have an out of body experience. It said you need to do these things it says right at that moment when you’re falling asleep or just waking up. Yeah, right, I thought. It suggested to imagine a string coming out of the top of your head and then plucking the string and you’ll FEEL it for real and follow that vibration right up the string and out of your body. You can then supposedly fly around, etc. and this string is really the “silver cord” that is myth to attach you to your body.

    Anyway, that very night I fell asleep on the couch lying on my side and I woke up and saw the VCR clock in the distance. I immediately thought of that article I had just read earlier that night and imagined a string, etc. Sure enough, I felt this vibration/sensation (that later felt similar to sleep paralysis in years to come) and suddenly I saw the VCR clock moving downward! That meant I (or some part of my consciousness) was moving upward in the air. I got near the ceiling and started to panic as this was too crazy and suddenly I shot back into my body (clock went up fast and I was lying awake on the couch). I’ve never had an “out of body” experience since that one even with all that sleep paralysis, but my goodness that was weird and probably 2-3 years before I moved to that house and had the incidences start, but it “felt” similar.

    If anyone is still reading, I hope you enjoyed these stories as it’s hard to tell them to people you know lest they think you’re insane or something, but they all happened exactly as I stated them (within my ability to remember them accurately).