In Retrospect & Call for Submissions

by julie on June 3, 2010

I have a confession to make regarding exercise and narcolepsy. Although I rarely think I’m wrong about much, I must admit I was wrong about something on this blog.

Athletics had always been a huge part of my life, yet I stopped exercising altogether when diagnosed with narcolepsy and cataplexy.  As you know, I reincorporated exercise into my life this past year to run the Boston Marathon for narcolepsy research. Although stubbornly determined to take this challenge on, I originally feared the exercise required to train would negatively affect my narcolepsy. I predicted right here on THIS blog that my daytime sleepiness and my cataplexy would get worse with my running.

I wrote:

“There are plenty of reasons why I should have said no to this opportunity. Intense exercise makes me tired – I’m already tired enough as is, why make life harder on myself? Running could be dangerous with my cataplexy – I could have muscle weakness while running and possibly fall and injure myself. My medications are incredibly dehydrating – I already struggle to stay hydrated, never mind hydrating for long-distance runs.” (From Decisions Decisions, January 26, 2010)

In retrospect, I was wrong.

In the six months I trained for the marathon, my mind and body felt stronger and more resilient than ever. The long runs did make me tired. After my 16 and 18 mile training runs, I was totally exhausted the next day. Naturally, I blamed narcolepsy, and was surprised that other marathoners, who didn’t have narcolepsy, reported similar exhaustion.

Studies suggest that low to moderate exercise reduces fatigue. Originally, I was skeptical of whether this applied to me as a person with narcolepsy, as strenuous exercise often left me exhausted. Low to moderate exercise such as walking, jogging or slow biking seems to be the way to go. 

Not only did the training not negatively affect me, it did the opposite – it positively affected me! Not right away, but after a few months of sticking to it, I discovered new muscles in my arms, legs and stomach I’d never felt before. I felt happier and lighter in my step.  For me, the benefits of this training greatly outweighed any draw-backs. 

Along these same lines: I’m currently writing an article for the Narcolepsy Network Newsletter about different ways that people with narcolepsy have incorporated activity into their lives. If you are a person with narcolepsy and have one or more forms of exercise that you find helpful, please write me at julieflygare@gmail.com. 

Specifically, I’m interested in:
1. How you got started in this exercise/activity
2. What you feel the benefits are for your narcolepsy/life.

(I’d love to get a variety of activities including yoga, pilates, walking, biking, gardening, tennis, any water-sports or team sports!  Thank you in advance for any help with this project.)

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One more thing: Don’t forget to keep voting for Stanford’s Pepsi Project everyday at: http://www.refresheverything.com/narcolepsyimmunochipproject . You can vote once a day!

{ 3 comments… read them below or add one }

Anonymous June 5, 2010 at 7:33 am

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

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Nike Blazer June 8, 2010 at 4:32 am

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

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Bombolino July 21, 2010 at 6:38 am

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

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