Wide Awake & Dreaming
One Step Above of Narcolepsy
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.
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!
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.
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.
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.
"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.
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 …
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!
You have inspired me to stretch more! I am lazy about stretching regularly too. We should try to do it everyday!
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!
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
Congrats! You're on your way! I like the reference to Wagner…I'm going to see Die Walkurie this summer! Epic!
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.
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.comThanks again!
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!
Was I the inquisitor???? Uh-oh…
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.
Julie, you are an inspiration…keep running! I am routing for you over all the Kenyans. Monica
Wow – truly inspiring! Best wishes on your training and for the race. Think I'll go for a run….I have NO excuses
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)
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
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
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
Great pictures. Loved the escalator picture. Remember when we walked up that escalator in 2000 when it was out of service?
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!!!
beautiful pictures! i vote for Snoverkill
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
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
Very honest Jules. Your self awareness is inspiring. Hope the day went well.
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.
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!
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.
excellent post…i look forward to reading part II
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."
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.
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
At least the doctor got one thing correct in her notes "Is quite physically attractive"!!! Ha, ha!
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
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!
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 confirmedkeep writing julie…it's insightful for me…great post!!
I'm calling you Wanjiru from now on! I love it…almost as much as I love you! SO proud. xo
It's PERFECT! You ARE leading a clan of warriors. Warriors who are fighting to improve their lives and lives of others!
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! 🙂
love that you have started adding photos! hope the styrofoam log helps your tendonitis!
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!
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 thosegiant 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.
good luck…and keep on training!!
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.
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?!
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.
I meant 1974!!!
Best photos yet! Expert photography! lol!Interesting spelling Dad..
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!!!
Marathon day is my favorite day of the year! Why do they bother calling it Patriots Day?
Good blog today, Julie. You really spelled out the reasons you are putting yourself through all this training and rehab. It was very moving.
stay strong!! we are all supporting you!
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!
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.
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
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
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…
Running certainly has its ups and downs, along with the weather. Good for you to finish the trial run/walk in that miserable rain!
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
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!
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!
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.
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.
wonderful views of spring in Washington, DC
thanks for sharing.
Great pictures. Will you take your cameral on the marathon route?
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.
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.
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
Julie you're famous!!
Nice article Jules. I forwarded it along to many people!!
What an engaging and accurate description of what it's like to live in a world between sleep/dreaming and being awake!
Thanks for putting yourself out there to raise awareness. You go, girl!
Sox was excited to see her picture on the internet.
So brave of you to share this story. I can relate all to well and really appreciate your honesty.
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.
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.
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
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! 🙂
great shot of the u.s. capitol!
My favorite is the zoo sign 🙂
There all my favorites, they are you essence of Washington, shows what a beautiful city Washington is.Julie Marsland
Thank you for sharing your feelings. Thank you for being "with" me in this struggle.
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)
So exciting! What's the website to track your progress? Please post!
Gorgeous pictures Julie! Especially love the Monument and Capitol photos
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
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.
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!
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 🙂
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.
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
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!!
What is the significance of establishing narcolepsy as an autoimmune disorder?
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
GO REM RUNNER!!!!!!!!!!! Can't wait to hold those signs on Monday! xo
Good luck, Julie! I'llbe pulling for you and (hopefully)tracking your progress online. Will you post your (chip) number on this site? Barbara DeeP.S.Sent in my donation today.Hugs to you!!
You are amazing!! Keep on running! Keep on dreaming!! Good luck!! Michelle Hemingway
Beautiful post Julie! I love that poem. Good luck on marathon Monday, you'll go great!!
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.
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!
Remember the Name – Fort Minor
Good luck today!!
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
Im so proud of you A1!!!
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!!!
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! 😉
Wow! What an eventful morning. How could you run a marathon after all of that?
You are amazing and so inspiring! I love this post, and I loved seeing you that day. Congratulations again!!!
You are incredible!! I wish I could've been there cheering you on! Congratulations! You are an inspiration 🙂 xo
Could not be more proud of anyone. You are incredible! So honored to have been able to cheer you on! Love you. xoxo
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.
Congrats! You made it in under 5 hours? That is SUCH an accomplishment! I'm so proud of you!
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!
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.
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!
Awesome pics and blog Jules — I heart REM Runner!! xoxo
Great post, Jules! What an exciting goal for narcolepsy and an unbelievable accomplishment for breast cancer. Keep writing…I miss your posts. Xoxo
I wish I was attending as well.
Have fun, and no wheelies.
I look forward to your pictures.
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.
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?
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 firstname.lastname@example.org.
All my best,Julie
I VOTED! This is great! Woohooo!
This is so great! Thanks for getting the word out. I voted and I'm telling all of my family and friends to vote!
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.
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….
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.
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…
Come down to Houston between now and the end of August – I'll show you hot!! 😉
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!
Wow! So excited to watch. xo
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!
Congratulations to such successful fundraising!
Wake Up Narcolepsy has picked up great momentum. Your fundraising skills are to be commended.
I am so proud of you!
So great to see you run.
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? 🙂
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.
Amazing Julie! Great to hear you are doing well and doing great things! xoxo
Way to go! Beautiful pictures too. Good luck with your training-looking forward to reading about it 🙂
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. 🙂
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!!!
Good friends are priceless, huh? 🙂
Good Luck! You'll be on my prayer list today. Take a deep breath…you'll do great!!!
I look forward to hearing from you after the visit to the Hill. Go and get em Julie.
I'll be thinking of you today! You can do it! 🙂
Great job on your narcolepsy advocacy efforts. You are an inspiration! Can't wait to here how it went on Capitol Hill.
So glad your visit was successful!
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.
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!
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.
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!)
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: email@example.com
I have a blog, though I haven't posted in a while –
Poignant, you have rendered me speechless,I know this story all too well.
That was by far one of your best posts. I felt like I was right there with you..
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.
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!!
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.
Seriously cool pumpkin, Julie-I love it!
cute pumpkin, pumpkin!
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?
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!
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. 🙂
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
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.
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!
Important message for everyone.
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.
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
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/
Thanks for the inspiration!
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!
Come to my yogilates class with me! 10 dollars per class or 88 dollars for 10
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!
A lot of places offer specials or discounts to new students. You could keep switching for a new deal.
Kori, send REM the details on hip hop yoga so I can explore this!!!!
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….
Good advice, REM Runner! Especially good to remember during the holidays…I wish we could be Yin Yoga buddies again! 🙂
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!
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
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!!!
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.
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!
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.
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.
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!
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.
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.
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?
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).
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 🙂
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.
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
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' !!
You totally would have beat the pants off him! Just be honest Julie, you totally "gave " him that game! 🙂
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.
Hooray for Ben!
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
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.
Remarkable just how real we believe it all is, totally relate-able.
Someday I need to sit down and redo my website….perhaps time to do it using something more than Notepad.
I already signed up for the mailing list 🙂 Looks great, Jules!! xoxo
Cool website, Julie!!
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.
Those are great CD's. Highly recommended.
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 againCatherine
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)
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
Geeze Julie! Maybe you shouldnt be so funny! 🙂
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.
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.
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.
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.
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…
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.
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
Very thoughtful message, Julie!
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?
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
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.
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
Terrific idea- I will be with you in spirit.
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
Love it Julie! So glad I could be there for the inaugural event!
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….
So, how many kisses did you get?
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.
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.
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 🙂
In numbers there is strength!
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.
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
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.
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.
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.
Fleeting thoughtsAnxious feelingsHope I don’t fall asleep
Feelings returningHead clearingI won’t fall asleep
Everything slowingHearts racingHope I don’t fall asleep
I can fight thisHealthy bodyI won’t fall asleep
Time muckyWords slingingHope I don’t fall asleep
Pride risingI’m winningI won’t fall asleep
Why meWhy is this happeningHope I don’t fall asleep
It’s not so badHow long will it lastI won’t fall asleep
Eyes flickeringLegs shakingHope I don’t fall asleep
Bighting lipPinching armI won’t fall asleep
Who’s watchingAnybody noticingHope I don’t fall asleep
Keep on fightingJust a little longerI won’t fall asleep
Eyes closing Darkness comingI’m falling asleep
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.
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.
Julie-Great post, especially the very last paragraph. Narcolepsy is truly unique for each individual who suffers from this neurological condition. -Sasha
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.
Gail: Thanks for adding this interesing piece to Julie's blog.
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!
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!
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!
Hey Julie-you are awesome for posting this. Would you mind if I reposted this on my blog?
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.
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!!
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.
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….
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.
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
Beautiful photos, Julie. And a nice message in your blog.
The beauty of these photos translates very well. Thank you for sharing.
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.
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?
Even more importantly, these people of science are full of heart!! Nice to see pix of my friends at Stanford.
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!
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
Thank you so much for coming to visit us and working so hard to raise awareness & funding!
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.
Great to see how committed Dr. Mignot and his staff are to researching narcolepsy – thanks Julie for visiting and writing about their work!
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.
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!
What an excellent news video! She really understands narcolepsy – inspirational to see this kind of determination to raise awareness about narcolepsy.
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.
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!
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
MIGHTY POWERFUL, thank you for sharing>
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.
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.
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.
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.
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.
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.
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! 🙂
You are my inspiration. Tomorrow morning I swim.Gail
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!
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.
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!
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!
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.
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!
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!
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. 🙂
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.
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/
Hmmm, fixating on a post-yoga fro-yo? I can relate to that…
Congratulations Julie. This is great stuff!
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.
Julie, thanks for keeping up with the developments in the pharma industry, let's hope they eventually find a cure!Robert
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
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!
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!
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 firstname.lastname@example.org…thanks!
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!
Fascinating! I will try writing down ideas before sleeping.
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!
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
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!
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).
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!!
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
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
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
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.
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
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~~
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.
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
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.
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!!!
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!! =)
She said "Marietta Georgia" not " married in Georgia".
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.
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?
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"
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!
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.
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
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
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")
Aw, we are SO proud of you and honored to have you as part of our cOMmunity! xx
Yoga can bring one unlimited benefits. Many Americans have fallen in love with yoga. I have been doing it since age 12.
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?
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.
Can I say it one more time?? I AM SO PROUD OF YOU!!!xoxoNS
You amaze me and inspire me! Your voice and personal journey will help so many!JG
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!
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
Congrats jules!!! I've already been bragging about this great press!
Really brave of you! Is there any possibility to read the article somewhere online?
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!
Congratulations Julie! Can't wait to read the article!
congrats!! I will be on my way out to make the purchase!!=) can't wait!!
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
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.
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 …..
Wtg, Julie.. wonderful article!
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 🙂
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.
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.
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.
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
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.
So proud of you, Julie! Sounds like this year's conference was a really wonderful experience.
Congratulations Julie!!! 🙂
so proud of you julie…congrats!
Wow Julie, congratulations!! That is a great honor to show how much you have accomplished in the last couple years 🙂
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.
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. 🙂
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.
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.
I love it!!
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!
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?
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!
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.
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!
Thanks so much Julie. You are a great role model and spokes person for Narcolepsy, Unell
Well done, Julie! Please let your loyal readers know when we can watch the interview online! CONGRATULATIONS!!!
Just heard about this and I cannot wait to see it!
I second Melissa! Looking forward to it!
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! 🙂
It was wonderful meeting you in person, Julie! Looking forward to seeing you on TV soon! – Gretchen
Adorable! Thanks for inspiring and sharing!
You are so creative and talented! They look great!
Love you creative pumpkin design.. Well done!
This is the first 14 minutes :
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!
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.
Well said Julie!
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.
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 AustinSt. Louis, Missouri
Here's a link to my story if interested:
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!!!
Julie, you continue to inspire me! Can't wait to watch your video…..it will be from your link though…I'm in MA.
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!
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.
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!
Julie,I just watched the segment online. What a great educational piece! You are such an inspiration and representative for those with sleep disorders.
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
I love how the video was both really informative about narcolepsy generally but also told your personal story 🙂
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.
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.
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.
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.
" 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!
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.
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? 🙂
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.
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. 🙂
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. 🙂
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!!
Way to go Julie!
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.
Great post! I loved your presentation in Las Vegas. You definitely made me rethink how I approach this daily question 🙂
love this post!it's exactly how i go about iti 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!
Congratulations on achieving the pose and sharing the Magic of the moment with reverence and inspirational photos and quotes.
Julie, you are amazing! I love your courage!!!! Keep going and thank you!
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)
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!!
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!
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! 🙂
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!
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.
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".
Beautiful. Thanks for taking us along for the ride. Wishing you a fascinating 2012!
Thanks, Julie, for the inspiration. I'm still working up to my blog. Happy New Year! Happy blogging!
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!
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!!
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!
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
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.
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.
I have begun a blog concerning personal evolution… I'd love to add your site as a link, please check it out.
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.
Great start Julie. I am inspired by you daily.
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
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 !
Julie, thank you for everything you do for all of us… Holding you in my heart. Not just now, but always.<3<3<3
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
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.
Julie, I am so sorry to learn of your shockingly sad news. I'm sure you made your father proud.
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!
Thank you for your beautiful words. I will be praying for your family as you grieve this tremendous loss. -Sasha
Sorry for your loss, may he rest in peace.
So beautifully written. Love you Julie.
Much love and comfort to you in the death of your father. Praying for you and your family. <3
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.
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.
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!
This comment has been removed by the author.
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
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
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
What a beautiful tribute to your father. He must have been a wonderful man. I am so sorry for your loss.
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.
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.
Oh Julie, I'm so sorry for your loss. I'll be praying for comfort for you and your family.
"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.
Sorry to hear this news. He will always be with you.
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
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.
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…
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.
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.
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!
Julie, love this post.
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.
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.
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?
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!
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.
Julie, thanks for the info! Can't wait to put on my walking shoes for a great cause.
Thanks, Julie. See you there!!
Thank you for making this happen, Julie! A fun event for a great cause! I'll be there… Kerry
OH MY GOD, that's my eighteenth birthday! I am SO going to be there, no matter what it takes 😀
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!!
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!
Oh no! Now I have to come up with a cool T-shirt. Off to Pinterest I go 😉
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.
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.
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.
Good luck Jules 🙂
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
Thank you, Emilee!
Great advice, Gail! Thank you.
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. 🙂
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
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!
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.
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. 🙂
Thank you, Marcia. So excited for the future. Lots to look forward to. Stay strong!
So glad you are back to dancing. I love the image of juggling clouds.
Beautiful. Really beautiful. Thank you so much for sharing this.
All the best,Jenny Blockaka One Nia Girl
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, 20129:00am until 11:00am
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. 😉
I so look forward to joining the other 90 walkers to raise awareness about Narcolepsy in our capitol.
Its just too cool to read a blog post about sweet potatos!!! You rock Julie! And thanks for the shout out too 🙂
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, PTNia Training Faculty
Awesome. Nia is like coming home to me.
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 FacultyNia White Belt Trainer
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!!!
Pockets of sunshine huh…love it. Creative imagery. Perhaps a Nia teacher in training??Thanks for sharing your story.Jill Pagano
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.
♥ ♥ ♥
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.
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
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)
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!
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
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
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
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.
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!
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!
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
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
Coming back to Nia always feels like coming home to me! Thanks for sharing your return?
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"!
OH WOW that is awesome! ^_^
Hehehe…. I am going to watching YouTube for vids! Have a wonderful time!!!
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;)))
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.
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
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 OfanNia White Belt Trainer
this is great. Nia is so much more than just an exercise class !!
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
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.
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
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! ^_^ )
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
Such creative posters! Well done!
Thanks for reminding us to savor life's simple pleasures.
Yummy! Do sweet potato fries count? 😉
one of the best articles I have seen…thanks for posting Julie. Kim Grady
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, KelleSanta Fe, NM
Congratulations on seeing your dream become such an incredible success so quickly! I am really proud of you!
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!
What a success on what looks like a beautiful day! Congratulations Julie and all involved in the Sleep Walk.
Hmmm, I might have to plan to travel to one some time….
I had so much fun on the walk! I'm looking forward to doing it again next year!!
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!
What fun! Wish I had been there! Congratulations to all
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.
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.
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.
Great post Julie! Thank you
Hi Dawn, So glad you've found my blog! You are certainly not alone. Thanks for your comment. Please stay in touch!
Let me know if you get a spot. I will be a sponsor. Wonderful way to honor your father
I really enjoyed this blog Julie…I love your writing style! Thank you!
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
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.
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 🙂
Thank you so much, Debbie!! This is exciting news!!
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 🙂
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
can't wait to read your book!
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.
Congratulations, Julie! This is a huge milestone in your life!
Wow Jules – You really completed a massive goal! I'm so proud of you.
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?
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….
you are so adorable!!!
So, what's the news?
Go Jules GO!!!!!!!!!
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.
You are a trooper! Keep icing and rolling. Proud of you!!
This is good news… Now to save up….
Cheering you on from boston!Rebecca
Good luck in your training! I am glad that we at Northeast Delta Dental could help you out. Have a great day! Debbie 🙂
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.
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)
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!)
good vibes here for you….
Just keep up the good work-you know you've got this!
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!
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 🙂
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
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
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
You rock Julie, that's awesome! Thanks for being our brave voice 🙂 Michelle Stewart
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.
[…] Press […]
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!
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
ps-I just pinned your blog to my Narcolepsy board on Pinterest…..
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!
I’m pitching for you too, as are all those who know and love you! Go 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.
[…] 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 […]
[…] 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: […]
[…] by julie on February 22, 2010 (Note to reader: This is a continuation of my last blog post. To read Part I, click here.) […]
[…] 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. […]
[…] 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.” […]
[…] 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 […]
[…] From Where I StandDangerous LaughterWhy Not Today […]
[…] – I already struggle to stay hydrated, never mind hydrating for long-distance runs.” (From Decisions Decisions, January 26, […]
[…] 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 /* […]
[…] Click here to read Adventures of the Sleepy Yogi Part I: Meeting the Double Pigeon. […]
[…] I will be sure to report back here afterwards! Until then,REMRunner […]
[…] 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 […]
[…] 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.) […]
[…] julie on November 22, 2011 As previously noted, motivation doesn’t grow on trees. It’s not for sale either – not even at […]
[…] a previous post, I offer a few basic communication guidelines:1. Keep an upbeat tone2. Leave out big science-y […]
[…] 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 […]
Nice entry – and so very true! Have a great day!
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. ”
Wow, what great pictures.
Looking forward to more, and putting money to the cause….
Thank you so much, Dreamer! Your support means so much to me. Sending wakefulness and smiles your way, Julie (aka the REM Runner)
Julie Great Job and Keep it up, you are so inspirational to all of us!!
Good Luck in your Race!!
[…] moment when you find words that accurately describe your experiences. I remember mine […]
You have more motivation that I have – I am impressed with your determination! Keep up the great work – you are an inspiration!
Can anybody go to this? Unell
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)
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.
Good luck as you meet and greet your edge, all the way up, up, up!
LOL…Don’t forget the mothers who ARE narcoleptic 😉
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. ….
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
Hey congrats on bib #! Good story, good cause, good luck! @kitchentabledoc
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!! 🙂
Way to go Julie! I wish I could have been there to shoulder some of the cataplexy.
Thank you, Tricia! Your on-going support means the world to me.
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!
Thank you, Trinity! Your positive attitude is an inspiration to me!
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!
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
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! 🙂
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
Very enjoyable entry! Best wishes on your adventure! Have a great day!
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
🙂 You are one busy lady! It sounds like it was a great experience! Keep up your good works!
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! 🙂
Can I read a transcript of your speech? I’m sure it was eye opening! Congrats as always!
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!
[…] 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 […]
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,
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
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.
Thank you, Tricia! It was a great event. Safe travels! -Julie
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.
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.
[…] more on Haven’s story, click here. […]
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!
Thank you, Rebecca! Your support means so much to me. 🙂
“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.
Thank you, Gail!! I will just keep getting up, reinventing and re-designing the road ahead. Thank you for sharing in my adventure.
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
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!
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
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!
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
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!
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! 🙂
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!
[…] 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 – […]
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! 🙂
You got it – I will be sending tons of positive energy and will do my morning Healing Mantra in your honor! Good luck!
[…] 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 […]
Julie, you make PWN so proud, you go girl!
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.
I love the video! Glad the experience was all your dreamed it would be 🙂 Take care!
Thank you, Debbie. You’re simply the best!! 🙂
She makes it look so easy….
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
You did it! Congratulations!!
Thank you, Laura!
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. 😉
Thank you, Mark!! Your support means so much to me.
You inspire SO many people!! Wonderful job!
Thank you, Kerry! I’m glad my journey can help others. That makes this all much more worth it! 🙂
WOW JULIE, so proud of you! Dad must be too.
Thank you, bro!! I think Dad would be amused. He always relished our athletic challenges and cheered us on to victory!
Fabulous post, Julie! You have a way with words and a way with dreams (you live them). Take care and best wishes!
Thank you so much, Debbie. I do enjoy writing. 🙂
Beautiful post. Congratulations on the run!
Thank you so much, Laura!!
Amazing post! completely agree with Debbie ~ you have an inspiring way with words! Super BIG Congrats!
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. 🙂
i hear there’s a race up mt. everest…interested?
I’ll follow your lead!! 😉
” 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!
Thank you so much, Gail! That was my favorite line of my writing too. Great minds think alike. 🙂 Love, Julie
[…] 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. […]
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.
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.
Sounds like an inspiring book! Thank you for this recommendation, Gail. I look forward to read