NARCOLEPSY: NOT ALONE Campaign Launch

by julie on July 24, 2013

Lost and alone. We’ve all been there. Today, I’m launching the NARCOLEPSY: NOT ALONE awareness campaign – to prove that narcolepsy is REAL and that we are NOT ALONE. People with narcolepsy AND supporters are invited to submit photos for the GALLERY & MAP. 

Watch introductory video:

Join Us:

People with narcolepsy AND supporters around the world (friends, family, pets, etc.)
 [View/Print DIRECTIONS & SIGN PDF]

Directions:
  1. Print sign or create your own.
  2. Pick location & snap photo.
  3. Send high resolution photo to narcolepsynotalone@gmail.com. Include your first name & your home state (in USA) or country (outside USA).
  4. Spread the word via social media:
    • Facebook
    • Twitter (#narcolepsynotalone @Narco_Not_Alone)
    • Instagram: #narcolepsynotalone @REMRunner
  5. Check back for campaign gallery, map and contest updates!
Please note:

Submitted photos will be used as part of the on-going “Narcolepsy: Not Alone” campaign conducted by Julie Flygare including blog posts, web pages, videos, and social media. 

 

{ 23 comments… read them below or add one }

laura j. evert July 25, 2013 at 4:26 pm

really amazing idea, julie! oxx

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julie July 25, 2013 at 4:57 pm

Thank you, Laura. Once I got the idea in my head, I couldn’t get it out. So exciting to watch it become a reality!

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María de la Lastra July 29, 2013 at 11:25 am

Thank you Julie for all you are doing!
Greetings from Spain,
María.

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julie July 30, 2013 at 1:09 pm

Thank you, Maria, for supporting the campaign from Spain!

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Arnold Gendelman July 30, 2013 at 5:54 am

Julie you ARE our champion —and that beautiful smile tells it all, because now
YOU MAKE ME SMILE—–
Your new epiphany will make PWN’s Allies-Alone-Together World Wide.
Get ready–this one is BIG—–

Arnold

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julie July 30, 2013 at 1:11 pm

Arnold – I’m so glad you are excited about the campaign! I am thrilled by the response so far. Looking forward to seeing more smiling faces from around the world! Big smiles and many thanks, Julie

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Lisa Wright August 4, 2013 at 8:50 pm

I thought there was nothing wrong with me but dehydration when I started just falling/passing out in my early 20’s it was not until I had a major “crash” could not stay asleep at night and could not drink enough coffee to stay awake during the day that I was finally given a sleep study and the information that I have narcolepsy and that I was born with it ____ then all those fainting and falling problems became real.

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julie August 4, 2013 at 9:35 pm

Lisa, I’m so sorry to hear that you too have narcolepsy. I’m glad you finally found the right diagnosis. Sending wakefulness and big smiles your way, Julie

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Liesbeth September 23, 2013 at 5:48 pm

I am soooo glad i found ya! 🙂

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julie September 30, 2013 at 4:32 pm

Thank you for your comment, Liesbeth. I’m glad you found me too. 🙂

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Jennifer Taylor September 30, 2013 at 2:24 pm

Hi Julie,

I just wanted to let you know ever since I found your blog about a month ago I feel like I can show other’s what Narcolepsy & Cataplexy is about. This weekend I had the courage to play horseshoes with the family and 1 friend that was over. I normally never do because of the Cataplexy. And yes, I threw a ringer, and down to the ground I went. But this time I wasn’t embarrassed and it felt good. Thank you so much for your encouragement, and support. You are truly a blessing!

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julie September 30, 2013 at 4:32 pm

Thank you so much for your kind message, Jennifer. Is COURAGE contagious because your story about the horseshoes makes ME feel more brave! I’m so very thankful for your support. Sending wakefulness and big smiles, Julie

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Laura Forgie October 28, 2013 at 12:15 pm

Hi Julie!
I came across your Instagram just by chance but I think fate had a little to do with it. I’m 27 years old, I started having symptoms when I was 16 it took 4 very long 4 years to get diagnosed. I feel like my family and friends are really supportive but at the same they do make jokes here and there about my condition. I always say it is hard to live to with but it’s not cancer. More just an inconveinance than anything. Living with the condition is hard but I also find some of the symptoms of the medicine another hard aspect to deal with. I could go on and on but I just wanted to deeply thank you for making this site and all your time and effort you put into making people like me feel like I’m not alone.

Thanks again,
Laura Forgie
Pgh, PA

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wendy October 29, 2013 at 1:34 am

I think this campaign is awesome! My 6 year old son was diagnosed in July so I’m trying to get plugged in anyway I can!

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Hersholt Ford " January 20, 2014 at 11:47 am

Hi Julie,
Thank you for Making us PWN to not feel alone.. Last week when I discovered your links… I was feeling very much alone again. I was diagnosed the first time in June 2001 after collapsing at a Church Youth Camp… I was taken to a hospital in Columbus, Texas. They ran all kinds of tests that week, and released me on Friday with Seizures, with instructions to see my GP so that he could refer me to a Neurologist. I saw my Dr. as soon as I got home. Our daughter lived in Dallas and came to Columbus to get my wife and me. My Dr. continued
to treat me for seizures until later when I went to LSUHSC emergency in Monroe La. He had found that the quickest way for me to see a Neurologist, was to check into ER.. I registered at the desk and was in a long waiting line, when I had another Cataplexy Attack..They put me in Triage from 8am until 11pm. At
11pm, a black Dr. came in my room and said, Mr. Ford, we have been observing you all day. You are not having seizures, it could be several things, I was admitted went through several more test and referred to Dr. Andrew Chesson a Neurologist at LSUHSC. for October 2001. After arriving home, I called my brother Acie in Memphis and he told me to look up Restless Legs Syndrome..My wife did and while she was looking she briefly read about Narcolepsy and she stopped there and said this describes you. Remember in December 1966 when you were in the Osteopathic Hospital after hitting that telephone pole and Dr. Freiberg said that he thought you might have a rare condition. I went to my GP
the next day. Dr. Michael Smith treated me with Provigil until I met with Dr.
Chesson.
Anyway, I join you in Narcolepsy Awareness and I would like your help to
organize NARCOLEPSY AWARENESS IN BRANSON, MO. My Daughter,
Cheryl Ford and I have directed MS Walk in Branson…I have personal friend who is broadcaster at local Radio Station…Please send me necessary materials for this,,, I would like to do the NA walk this spring or early summer….
Sleepy Preacher
Hersholt Ford

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Stacia January 30, 2014 at 1:56 am

Julie,

My name is Stacia and I’m a sophomore in college. I started experiencing excessive daytime sleepiness in high school and was diagnosed in the summer after my junior year, but it’s taken me all the way until my freshman year of college to really sort out medications and feel like I’m in control of my life again. Like the experiences you talked about in your book, I too go through phases of being intensely thankful for the wonders of modern medicine and times where the thought of continuing to gag down that salty abomination seem downright depressing! My sleep specialist recommended your book to me and I ordered it right away. In fact, it just came in the mail today and I finished it in a matter of hours! Thank you so much for not being afraid to share your story, it made me believe that I can achieve more than what I think is possible!

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Robert Pickett March 28, 2014 at 11:28 am

Hello, Julie.

I was diagnosed 35 years ago with narcolepsy. It began the summer before sixth grade. There is a coincidence that my siblings and I received MMR vaccinations that particular summer and my episodes began right after. I’m not saying that’s the causation, but as I said, an interesting coincidence.

At first, I had horrible night terrors, followed by out of body experiences. My mother taught me lucid dreaming techniques which alleviated my anxiety that had developed over going to bed. Then, September came and school began. At first, I thought my excessive sleepiness was due to getting up at 6am to commute to school. I quickly realized this wasn’t the case and something was very wrong. I approached my mother one morning and informed her that I just couldn’t stay awake no matter how hard I tried.

She immediately went into action and got me evaluated and immediately diagnosed. However, diagnosis didn’t come with any support. Coping was something I had to learn on my own. I think that was the hardest part of all. Everyone around me thinks they know what’s best for me but they don’t realize that over my entire life, I’ve tried it all: vitamins, trying to be “more active”, focus my attention, acupuncture, chiropractic, Modafinil, Ritalin, and on and on. Finally, about five years ago, I told them all to go to hell. If my body says it’s time to sleep, I’m going to honor that and take a nap. If you’re hungry, you eat!

For many years I suffered from depression because of narcolepsy. My episodes were extreme when I was young. You couldn’t have a coherent conversation with me because I feel asleep so fast and so frequently, sometimes my eyes wouldn’t even close. I lived in two worlds and didn’t know the difference between what was real and what wasn’t. I thought I levitated down the street. I thought I passed through doors like a phantom. Finally, I tried to walk through a sliding glass door and when I bounced back (thank goodness it didn’t shatter!) I had to think to myself, “Hey, something’s wrong here.” And so I began to sort out reality from the hypnogogic phenomenon.

The most awful part about it isn’t falling asleep. It’s the way people treat us. I can’t tell you how many people have thought I’m on drugs or drunk. I have one friend who, out of genuine concern, is constantly asking if I need to take a nap, which is really annoying. Or even worse, people GIVING ME PERMISSION to fall asleep. (Ugh. Really?) Often, I feel like I have to stay in motion somehow to signal to others that I really am awake: I tap my foot or fingers, I run my hand through my hair, I polish my glasses, I hum. Whatever I can do just so they quit poking me, jostling me, throwing things at me. Leave me alone!

I’m not angry, just frustrated. I’m actually a very optimistic, positive person. I’ve done some pretty cool stuff. I never went to college (but am finally getting prepared for that) and have run a restaurant, had my own general contracting business, worked for several top law firms, been a public speaker (getting back into that as a matter of fact), and have traveled more than the average person. I’ve worked in politics at an executive level. I just regret that I’ll never be able to be a deep sea diver – seriously. I can drive now and am planning on learning to skydive.

As I’ve aged my narcolepsy has become less severe. I hardly ever have a cataplectic event anymore. My excessive sleepiness confines itself to certain predictable parts of the day, mostly. I recognize automatic behavior better and can usually halt myself before I do any damage, like walking into a store display with a grocery cart. Most of my acquaintances take me in stride. When I’ve nodded off, one of my better friends told the people around me that I’d gone into power-save mode. (I love her!)

Anyway, I just read that Stanford University has isolated the cause of narcolepsy as an autoimmune disorder that attacks and destroys a very small portion of a certain group of brain cells, causing us to fall asleep. I don’t know what that means in terms of cure or therapy, or even if we’ll be able to count on that in our lifetimes. Sometimes I wonder if I even care anymore. I’m 45 this year and have had to live with it for so long I can’t remember at all what it was like to be typical.

Anyway, I applaud you for your efforts. I hope something positive comes out of it and will keep checking to see how things develop. Sorry for the essay.

Sincerely,
Rob Pickett

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Nikki Hurst May 10, 2014 at 9:14 am

Julie,

I just got my shirt in the mail from Booster and when I opened up the package I just started balling. I have been officially diagnosed for 4 years, I have felt so alone, unable to relate to anyone about what was happening to me and how I feel on a day to day basis. The daily fight of all the symptoms, how most people only see the EDS and unaware of all the other symptoms we face daily. 4 years ago there wasn’t was much information out there as there is now. February of this year I started re-researching narcolepsy and was so blessed to come across your inspiring site. Its one thing to see your site and to feel the hope it filled me with, but receiving my t-shirt in the mail made it reality, tangible, real. It released so much pent up emotion of struggle, frustration, exhaustion of the day to day we experience from fighting through our day and expressing either education about narcolepsy or holding your tongue (for those you realize don’t care/not interested in understanding, not at all saying they are bad people at all! Most of them are my family lol)

I have lost relationships, friends, jobs, social life, activities, family support/understanding and more to narcolepsy.

And I have to say I am damn proud to have narcolepsy. It has shaped me into the woman I am today with the people I am blessed to have in my life. The struggles I have faced, continue to face, and will face in the future in my belief is all for a reason. I feel very blessed to be given the life I have and I am grateful for everyday and more thankful everyday. I fight for each day, give each day my all, and I don’t regret one thing. Narcolepsy has taught me to love, appreciate and cherish each day and the people that are in it. Narcolepsy has taught me to love myself and all my traits for who I am. I wouldn’t trade it for anything.

Thank you, thank you for having the courage to stand up. I am behind you Julie 110%.

Dream Big and Never Surrender,

Nikki Hurst
HD Enterprises

Within the next couple years I plan to donate at least $10,000 towards research. I love the quote, “If I can open others eyes to narcolepsy and its symptoms, maybe someone will lead a better life.” Worth every single penny plus some.

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Tanisha May 17, 2014 at 6:00 pm

Wow!!!!

Julie,
I am very pleased to see that you are doing so muchnto promote narcolepsy awareness. I am a nurse, and was recently terminated from my job for falling asleep, when I explained tonmy boss that I have a sleep disorder, I was told that I can’t use my disability as a crutch. I have lost so many jobs and dropped out of college so many times because of this disorder. However, after finishing nursing school, I am ready to stand up and fight….no more feeling isolated and sorry for myself. I have been reading so many blogs and stories about people with the same condition, some are success stories, others are people like me, wondering if anyone else knows what its like to be narcoleptic. This year I plan on bringing narcolepsy to light as well, I would like to know when you will be in the Michigan area to help educate others, and employers in particular on how to help rather than mock people, or simply fire them for being sleepy, when it is due to narcolepsy. Keep your eyes and ears sharp….and Julie….I am pleased that God gave you the strength to educate and advocate, I pray that I can do some good for others like us as well.

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Vinodh June 25, 2014 at 8:11 am

Hey Julie,
I congratulate you for creating this blog and helping out people.
It’s good to connect with people who has Narcolepsy so that we can support each other.
I am Vinodh from India, I am living with this for the past 5 years and finally I got diagnosed about a year back. I have faced all the problems along with the embarrassments that everyone of us face and now I am a post graduate in engineering.
My friend supported me saying ” Do sleep when ever you want and read only when you are awake”
“When all my friends read I slept and when all all my friends slept I read”.
What we all need is just to support each other and for that I am here with Narcolepsy, NOT ALONE.

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Erika B July 7, 2014 at 4:51 pm

I was diagnosed right before college graduation in Jan 2000. I went on to graduate school but stopped when I found myself behind the wheel trying to commute to Boston from Warwick after working full time days. Despite medication I was sleepy and it caused depression. Years later I married, had a baby and decided to try again. I graduated last spring (2013) with my Master’s in Counseling and currently work in community mental health (as I have since I was a teen.) I tell my clients just because you have a brain disorder, it does not define you. You are not your disability. You just happen to have one. You can do anything you want to. You might just have to circumnavigate.

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Andri Neophytou January 21, 2015 at 4:03 pm

My story is really…long! I am 41 years old and I have narcolepsy from the age of 13. I have a girl 10 years old, no work for 2 years, and 2 months ago the only man that I trusted ,loved ….walked out of my life for …..living!!!!(married 20 years! ) I live in CYPRUS ….alone…..For 24 years!!! I am afraid of living…can’t trust people 🙂

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Maryellen August 10, 2016 at 11:09 am

Julie, I am blown away by your book. I am only on chapter 9 and as I am reading it , it is as if I wrote it myself. I was dx 17 years ago after spending 2 years trying to find out what was wrong with me. Reading your books has brought back a lot of memories for me. Unfortunately not good memories but that is ok because it is inspiring as well. People with Narcolepsy should not feel alone and it sounds like you have helped many people realize this. Anyways, I am enjoying your book and will recommend it to others.
Maryellen from Maine

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