Wake Up Narcolepsy's Marathon Runners

The Boston Marathon is one of the most renowned and largest marathon road races in the world, drawing over 20,000 participants and 500,000 spectators to Massachusetts each year. As a person who has never liked long distance running of any form, especially recently with cataplexy making it more difficult, marathons have never meant anything significant to me, other than being an insanely long distance to run! My friends on the other hand run varsity track and get a kick out of taking a two or three mile trot through the woods in between homework assignments. They see more into the Boston Marathon than I ever could, simply from their love of running.

But recently, six amazing selfless people have given me a reason to be interested in this year's race, through their incredible goals of running the marathon for a good cause. Tomorrow while struggling through another long and sleepy morning of high school, my thoughts will be with the six runners that make up the Wake Up Narcolepsy marathon team:

- neuroscientist/sleep-expert Nancy Chamberlin
- WUN co-Founder and mother of a narcoleptic child Monica Gow
- WUN board member and mother of narcoleptic child Tabitha Crawford
- uncle of narcoleptic child John Leahy
- narcolepsy supporters Ken and Kim MacAskill

Wake Up Narcolepsy

These six strong and inspiring people all have separate reasons for their determination, but the thing that remains the same is that not one if them suffers from narcolepsy personally but they all have been working hard to raise money to fund narcaplexy research at two leading narcolepsy labs in the United States. One hundred percent of the $60,000 raised by running the past two Boston Marathons, as well as all funds raised by this years' team will be split between Harvard and Stanford's narcolepsy labs for continued research into this very misunderstood field.

So in closing, I'd like to thank all six of these awesome runners for working so hard to help everyone living with narcolepsy today and in the future, including myself. I'm so grateful for all of the people who care about narcolepsy and the future of this sleep disorder. Every penny raised is more hope that researches will be able to someday cure every one of us living with narcaplexy and prevent anyone else from having to go through their lives perpetually sleepy.

Read the full press release here: Six Wake Up Narcolepsy Runners Go The Extra Mile in Support of Narcolepsy Research

Good luck, WUN marathon runners!

Happy Easter and Passover!

Here's wishing you and those in your life a happy, healthy, and wakeful Easter and Passover holidays! :)

National Sleep Awareness Week 2012

In case you didn't already know,  the week of March 5-11th was the National Sleep Foundation's (NSF) National Sleep Awareness Week (NSAW), an annual week dedicated to promoting the importance of sleep.  The week intentionally falls before Daylight Savings Time, when Americans have to advance their clocks forward one hour and lose that sleep time. It's common to hear people complaining about Daylight Savings and the adjustment in their sleep schedules, which proves to be a perfect time to talk about maintaining a healthy sleep schedule for the other 364 days of the year (well since it's a Leap Year, it'd be 365 this year). Across the nation, events were held to educate everyone young and old on good sleep hygiene, the process of sleep and cycles involved, and of course various sleep disorders and their symptoms. The NSF even sponsors community events, providing sleep screening to the public.

The Saturday of this week was of particular interest to me; Suddenly Sleepy Saturday is (unofficially) referred to as Narcolepsy Awareness Day. This year the date of Suddenly Sleepy Saturday was March 10th, which also happened to be my 18th birthday! With a pretty big milestone birthday, a full year of starting to find relief from my narcaplexy with medications, and Narcolepsy Awareness Day all at this time, I had a lot to celebrate that day.

Across the country on March 10th, Suddenly Sleepy Saturday was celebrated in the only way that makes sense: by raising awareness for narcolepsy. Sleep Walks, events that were supported by the organization Wake Up Narcolepsy, were held in Washington D.C., Chicago, and Sacramento, and this year had a great turn out of participants! REM Runner blogger Julie Flygare (and my role model!) was an organizer of the event in Washington D.C. where media representatives received awards for their work with narcolepsy coverage in 2011 and a good-sized crowd of participants walked and danced their way around the National Mall. Be sure to check out Julie's blog post, When Dreams Come True - SLEEP WALK 2012, for pictures and details about the fun everyone had at Washington D.C,'s Sleep Walk 2012!

Count 'em, 18 candles! :)

Unfortunately I wasn't able to attend one of these events as my family and friends threw me a 'surprise' birthday party. But to everyone who did attend a Sleep Walk or any other narcolepsy awareness event on March 10th, I personally thank you for showing your support and speaking up for everyone dealing with narcolepsy, with or without cataplexy. Your efforts mean so much to me and the rest of the narcolepsy community!

I did what I could from right here in Toledo and posted awareness information on my Facebook and wore my Narcolepsy Network button proudly. My mom knew how excited I was for this celebration coincidence and how important narcolepsy advocacy is to me, so at my party she surprised me with a platter of narcolepsy awareness cookies! I think these might be my new favorite kind of cookie :)

My Narcolepsy Awareness birthday cookies... Thanks Mom! :)

Black ribbons are the awareness ribbon color for narcolepsy.

  The Narcolepsy Network  logo: the blue side is sleep, the orange side is all levels of wakefulness, and the inner circle represents the intermingling the two.   

My best friend Hayden and her sister Gracie with me at my birthday party :)

Narcaplexy Milestones: My Bowling Revenge

If you've watched True Life:I Have Narcolepsy then you've seen my experience the last time I went to Nortel Lanes which was a year ago, almost to the day. That was when my narcaplexy was at its worst, before I began taking medication and my other treatments to maintain the shred of normalcy I hoped was left in my life. I spent practically the entire time there either slumped in a chair or sitting on the floor clinging to the ball return, and MTV only showed you about 1% of the entire experience.

Well last Saturday, I went back to that bowling alley for the first time since then, with a different group of friends that make me laugh even more. My best friend Samantha who I haven't seen since Thanksgiving drove up from Georgia to visit her family and friends here in Monroe. I was severely in need of some quality fun and I got a huge dose of it, and can proudly say that I *mostly* managed to fight cataplexy, beat gravity, and avoid the ground!

So she picked me up Saturday for some mall, Chick-fil-a, Paranormal Activity 3, and cosmic bowling with our friends. I love when Sam visits, mostly because our friends are insanely funny. Like literally and completely crazy, so much so that even Sam ends up doubled over on the ground from laughing, and she's definitely not narcaplexic. As soon as I walked out of my house I felt that tight-throat weak-knee feeling hit me and I knew I'd have a long night ahead of me with trying to keep my muscle control in check.

Bowling was great and I was so proud of myself for actually managing to bowl for myself almost the entire time. Here those who have seen my True Life episode might remember my friend Kyle offering to bowl for me, because I couldn't move off the floor. I even sat on the barstools without worrying about falling off! Of course I'm not very good at bowling anymore; either from the cataplexy or the brain damage from my car accidedent, my arm muscles can get weak and randomly drop down limply, especially on my right side and I'm right-handed.

After about two hours we were done and I was grinning ear-to-ear with pride: I had conquered the bowling alley and gotten my revenge!

At least until one of the guys with us who I don't see too often, Scottie, started telling me jokes as I was climbing into the back of the car. One right after another, continuing even as I was leaning on the car and repeating "STOP" in between laughs, until I fell down onto the wet cement. It was all right though; Sam was behind me and caught me so I went down a bit more gracefully and didn't hurt myself, and he apologized and tried to help me up though I wouldn't let him. Plus, it was funny to hear her yell at him a bit once we were all safely in the car :) All in all, a really great night that was made perfect by re-found strength.

And since it was in the parking lot, I can basically say that I won, right? Yeah, I think I'll stick with that!

Rare Disease Day 2012

This year being a leap year, February's will have an extra day, bringing the count up from 28 days to 29 days. So with a whole extra day in the year, how will you be spending February 29th, 2012? 

To me, it will be another day to wake up, take my daily cocktail of medication, and hope that I won't feel too tired or have a bad day full of cataplexy. I'll yawn my way through a long day of school full of boring classes and try not to nap until I can leave for the day. Hopefully my teachers will be understanding but that's not likely--how can I expect them to possibly know how difficult it is for me to resist sleep? 

But it won't be just another narcaplexic day for me; it will also be the day that I will join others around the globe to raise awareness for everyone living with a rare disease, diagnosed and undiagnosed. In the United States, a rare disease is one that affects fewer than 200,000 people, and there are an estimated 30 million Americans affected by rare diseases. Struggling to find a diagnosis, information, and treatment are just a few of the things people with rare disease have to deal with, besides their medical problem itself. And unknown diseases can lead to a lot of misunderstanding when the rest of the world doesn't understand what you're suffering from either.

Rare Disease Day, a day devoted to raising awareness of these rare diseases, is taking place on February 29th, 2012, and people all over the world are going to make sure that these uncommon hidden diseases are well-spoken for. What will you do to help make some noise?

Happy New Year!

Happy New Year everyone! I hope everyone had a fun and safe New Year's Eve and had a blast ringing in 2012 :) I for one am SUPER EXCITED for 2012! Why? Because I'm a proud member of the Graduating Class of 2012! So you can bet that I will be trying my best to enjoy my last year in high school, before my life truly begins. I hope that you all will do the same, regardless of your age or class year! After all, the best slogan of this graduating class says it all:

The world isn't going to end, we're just taking over. - Seniors Class of 2012

Peace, love, and restfulness to you and yours for all the 2012!

-Julie

My Narcaplexy Treatments: Chiropractic Care

Since narcolepsy is a lifelong 'illness' with only a few medications that help narcaplectics fight off their symptoms, we are always finding other ways other than pill-popping to make us feel better. One thing I found fascinating when I attended the Narcolepsy Network 2011 Conference this October was the huge interest everyone took in each other's treatment. The first questions out of anyone's mouth after "Do you have narcolepsy? Cataplexy??" was "What kind of medication do you take?"

The main form of healthcare that I use that helps me is regular visits to my chiropractor, Dr. Nickalis Dumas. Without Dr. Nick, I have no idea where I would be today. 

Dr. Nick was featured in Toledo City Paper's 2009 and 2010 lists of the city's best doctors, and as a runner-up in 2011.

I owe so much to him and his staff for taking care of me and treating me like I'm family (and for my family for convincing me to go for that first visit despite my doubts!). Check out his practice, Rapid Relief Chiropractic Center in Toledo, OH:

Rapid Relief Chiropractic Center