Narcolepsy Network's Annual Conference

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This past weekend was the Narcolepsy Network's 27th Annual Patient Conference, which I had the pleasure of attending! Conveniently (for me), located in Cleveland, OH on the campus of the Cleveland Clinic, the conference's theme this year was "Banding Together Over Narcolepsy", noting the city's fame as the birthplace of rock 'n roll.

These conferences are a great way for people with narcolepsy to meet others just like them from all over the country (and even internationally from Canada and Australia this year!) and support each other. I had a fantastic time this year; same as last year, just a different city!

The speaker I was most excited to hear was the amazing Dr. Emmanuel Mignot himself; the Parisian director of the Stanford Center for Narcolepsy who is internationally recognized as having discovered the cause of narcolepsy. Just as exciting was getting to see my role model, REM Runner Julie Flygare, again after an entire year! (By the way, be sure to check out Julie's amazing essay "Sleep's Choice", recently published in SleepMatters: A Publication of the National Sleep Foundation).

Lucas and Ethan

I was so glad to see all my "sleepy" friends doing well and having improved in many ways since I last saw them. Bailey from Texas has found ways to drastically minimize her horrible cataplexy and has even gotten her driver's license--much better compared to a year ago when she thought she'd never be able to drive. Cejae was the most popular attraction of the conference, with her new masseuse certification and massage chair on hand to provide some professional relaxation instead of just "homework practice" as we called her massages a year ago. I met plenty of new friends as well. There was Ethan, a junior in high school who had us laughing the whole time; Raenah and Autumn, step-sisters who were there to either learn more for herself (Raenah, the narcoleptic one) or to gain a better understanding of what her sister has to go through every day (Autumn, the non-narcoleptic one); Lucas, the soccer champ from Australia who came a long way with his family for the conference; and so many more it would take me forever to list them all!

My Public Awareness Award :)

I was so honored to be given an award from the Narcolepsy Network Board as well! The annual Public Awareness Award has been given to some great narcolepsy advocates in the past, such as advocacy devotee Julie Flygare and professional golfer Nicole Jeray. This year the award was given to three people; narcoleptic couple Katy Scruton & Robby Roden and myself, for our roles on MTV's True Life: I Have Narcolepsy. Unfortunately Katy and Robby were unable to attend the conference, so I had to make a short thirty-second impromptu "few words" by myself... To call that the most nervous moment of my life would be an understatement!

As a final note, I'd like to give a shout-out to Cassie from Oklahoma :) Her father, Larry, sent me an e-mail to tell me that he liked my blog (I have fans, like actual fans?! This e-mail totally made my day!) and told me a little about Cassie. Being a freshman in high school is hard enough, and adding narcolepsy into the equation doesn't make it any easier. Keep on smiling, Cassie, and good luck with volleyball!

I suck at volleyball now thanks to my cataplexy making my arms go weak when I try to hit the ball, but I still play with friends and make an absolute FOOL of myself! :D

Julie Flygare Talks About Life With Narcaplexy on NBC!

You've read my posts about Julie Flygare a.k.a. the REM Runner before (Meeting The "Other Julie"), and now she's found her way back into the spotlight once again, finding new ways to educate the world about Narcolepsy and Cataplexy. On paper, you never would guess that she struggles with anything other than deciding what amazing thing she should accomplish next. From marathon running to memoir writing, she pretty much does it all! Watch her latest Narcaplexy awareness effort here; an interview she recently did with NBC News. Then make sure you check out her blog--she always has something interesting to talk about there :) 

Watch It Here!

Meeting "The Other Julie"

As I mentioned before, the conference in Las Vegas was full of Narcoleptics young and old, each with their own story to share. One woman who really struck me as a truly amazing person was Julie Flygare, a woman with Narcaplexy who has devoted her life to being an advocate for this disorder. She ran the Boston Marathon for the group Wake Up Narcolepsy in April 2010 which raised money for Narcolepsy research, worked with Harvard Medical School to create an informative Narcolepsy video to be shown to all of its students, and has a blog where she keeps her fans updated on her daily trials being an advocate for Narcolepsy and her work on her memoir.

I attended two of Julie's sessions at the conference; one about blogging and the other about advocacy. It was almost like hearing a motivational speaker, I imagine. She was so inspirational and made me want to tell go tell every person in the casino about Narcaplexy (now THAT would give Narcaplexy a weird reputation!). I still can't believe that I spoke with her, and then she asked to take a picture with me for her blog! That was a pretty great moment for me :)

And then to make things even crazier, my True Life episode, True Life: I Have Narcolepsy, aired on the 18th! They changed it on me at the last minute so I haven't even seen it yet :( I was flying home from Las Vegas when it premiered. So if you didn't get the memo and missed it, be sure to watch out for reruns or when it gets posted on MTV's website.

Cataplexy Man

Today is the first time that I've ever met another Narcoleptic person besides myself! Not just one either, I met so many Narcoleptics today it was just so surreal. I'm excited for the actuall conference to start tomorrow, to hear what these speakers have to say. Hopefully after this week I will have made some new friends and have a better understanding of my illness and how to help others :)

BTW, this is my new favorite dude "Cataplexy Man''. He was a gift from someone at the NN conference and he falls just like most of us! Haha check out why he's so special below:

In The Words of Jimmy Kimmel...

What It Feels Like...to Have Narcolepsy

By Jimmy Kimmel, 35, host of Jimmy Kimmel Live, as told to Brendan Vaughan

Truth be told, I'd rather have narcolepsy than not have it. When I get on a flight to Vegas, I'll fall asleep before the plane takes off and wake up after it's landed. I'm always very close to sleep. [Yawns]

I had no idea I had it until recently. All I knew about narcolepsy was a character on Hill Street Blues, Vic Hitler the Narcoleptic Comic, who would fall asleep in the middle of his act. But I did know that every afternoon between about three and six, I would get very tired for no reason. I would doze off in meetings, watching TV, even driving. You know how when you're regular tired, your whole body is tired? With narcolepsy, just the inside of your head is tired. It's like somebody's gently sitting on your brain. You have almost no focus. All you're thinking about is not falling asleep.

When I was emceeing Win Ben Stein's Money, I actually fell asleep during the show a few times. I would sit on the safe over to the side and just sort of doze off. But that was probably a combination of the narcolepsy and Ben's voice. Another time I was on the freeway in bumper-to-bumper traffic. My head was diving, then jerking back up. All of a sudden, this loud voice over a megaphone says, "Are you awake enough to drive that vehicle?" And I practically jumped out of my skin. It was the police, one lane over.

Anyway, I just always figured I wasn't getting enough sleep, so I would drink gallons of iced tea to get me through the afternoon. Finally I went to a doctor. When I told him how much iced tea I drank, he said, "What?!" He decided I was self-medicating, and he prescribed these pills called Provigil.

I have a pretty mild case with no other symptoms. Some narcoleptics experience cataplexy, which is a limpness in the arms and legs. I don't have that. I'd like to, though. It sounds great.

I've never used my narcolepsy in my work, though I do have a dream to someday use up an entire hour of television time by sleeping. Have I been approached to be the public face of narcolepsy? No, nobody wants me associated with their groups. I hope that changes, though. I would like to be to narcolepsy what Camille Grammer is to irritable-bowel syndrome.



Read more: http://www.esquire.com/features/what-it-feels-like/ESQ0803-AUG_WIFL#ixzz1FKcMwX9n

Happy Valentine's Day!

For all those who don't suffer from this condition, consider yourself lucky!
I definitely feel for this poor guy :( and am fortunate to, so far, not struggle with this trigger (although I'm only seventeen, so what would I know? haha)

http://www.theglobeandmail.com/life/the-hot-button/when-valentines-day-makes-you-sick/article1906648/