How Far Will YOU Go?

How Far Will YOU Go?

Many of you have heard me tell my story either here on this site or in the video from my presentation at last year’s Narcolepsy Network conference.  Intertwined in my story is the story of my son, Glenn.  He, too, has narcolepsy.  A few years ago he wrote a little testimonial and I recently convinced him to add some updated bits to it so that I could share it with you here.  I hope you enjoy reading it as much as I’ve enjoyed watching his story unfold in real time.
x – x – x – x – x – x – x – x -x – x – x – x -x – x – x – x -x – x – x – x – x

Glenn Burrow:

  • Diagnosed with Narcolepsy at age 15
  • Excessive daytime sleepiness since age 12
  • Started using diet to mitigate symptoms at age 18

Before I made a change to the way I eat, I had been using narcolepsy medication for 2 years.  At first, the medication was wonderful.  I was another person, I had loads of motivation, and I wasn’t tired throughout the day.  But after a while, I realized that some problems still remained.  One issue was that I still had extreme difficulty getting up in the morning.  This caused me to be very late to class quite often.  My frequent tardiness caused me to have to attend truancy court and do community service hours.  It was incredibly embarrassing to me, the kid who NEVER got in trouble.  Midway through my senior year, I had to nearly double my dose of medication to stave off the narcolepsy symptoms that were creeping back into my life.  After talks with my neurologist, his solution to worsening symptoms was to add a stimulant.  At the time, I was seventeen and healthy but at six feet tall I was only 125 lbs.  Taking a stimulant could cause a further drop in weight so needless to say, I refused his offer.

I was facing a dilemma.  I had a doctor whose only solution was to up my dose and add stimulants.  Not to mention all I had to look forward to was a lifetime of this, a lifetime of steadily increasing doses until the side effects overwhelmed me.  Or of taking meds to keep meds in check to keep meds in check, like my grandmother had been stuck doing.

I began looking at other options.  Narcolepsy runs in my family, my mother and father both have it. As do my grandparents, although only one of them is diagnosed.  My mom had been experimenting with dietary changes for a little over a year with some success and that seemed the most appealing solution to me.  On June 9, my 18th birthday, I decided to give it a shot.

In the early days I continued to take medication, just to bridge me over the transition to managing symptoms solely with diet.  I began with a gluten free diet and in just a couple of days, I could feel a difference. My motivation was increasing, and it was easier to get up in the morning. Still difficult, but now possible.  I was feeling okay but brief naps were required to keep me going.  I noticed that when I had a large amount of carbs, I would get very lazy.  I began cutting back on carbs and this is when the real changes began happening.  Mornings became comparatively easy, I had a lot more motivation, and I had a higher level of mental acuity.  I felt like I was using a part of my brain that I hadn’t been using before.  It was wonderful and I eventually stopped taking my medication altogether.

Glenn kayakingLast June, I completed “The World’s Toughest Canoe Race” – The Texas Water Safari. I paddled 89 hours straight for 262 miles solo, in the South Texas heat. 

 

 

 

This past September, I spent two weeks on the trail in Colorado, sleeping under a tarp, hiking in the snow and rain.  And this spring I will run in the Boston Marathon as part of Wake Up Narcolepsy’s team. Glenn on mountaintop

 

All this was possible because of the dietary changes I made 4 years ago.  

By changing how I eat I not only have the energy and wakefulness to participate in endurance sports, but I’ve also seen great improvements in my motivation, my ability to get up in the morning, my mental focus, time management, and quality of sleep, as well as having a decrease in my daytime sleepiness.  I eat healthier than ever and I feel orders of magnitude better than my medication ever made me feel.  I feel fantastic and I wish I had started much earlier.   I’ve come so far and plan to go so much further.

So… How far will YOU go?

-Glenn

x – x – x – x – x – x – x – x -x – x – x – x -x – x – x – x -x – x – x – x – x

Glenn has chronicled his travels with some truly beautiful photography.  This post’s featured image is just one of many gorgeous photos taken on his hiking trip in Colorado this past September.  Go check them out for yourself at Glenn Burrow Images.  These photos are for sale and are even more stunning printed than they are on screen.

Should you wish to support Wake Up Narcolepsy’s efforts at raising awareness and funding research, please donate via Glenn’s Boston Marathon fundraiser HERE.

I hope you enjoyed Glenn’s testimonial.  To see other PWN testimonies you can go to the TESTIFY page.  Stay tuned for more stories of PWN that have found their way OUT of narcolepsy and INTO life.

Your Madcap Miss (a.k.a. Gina Dennis)

Let me be totally up front here…I AM NOT A DOCTOR, nor am I a nutritionist, I only have a tiny amount of formal training in such things as a Health Coach.  But I am a person with narcolepsy who uses dietary and lifestyle changes to mitigate my narcolepsy symptoms.  I’ve been experimenting with these changes since July 2011 and have successfully maintained a high level of narcolepsy symptom management since that date.  And so has my family with narcolepsy.   This website contains our personal stories, failures, and experiments.  In this website I will share with you the information that I have found most credible and some practical ideas for mitigating narcolepsy symptoms.  I beg you to check with your doctor before initiating any of the dietary changes I speak of, especially if you are taking any medications.

Madcap Disclaimer

    4 Responses to How Far Will YOU Go?

    1. i love your story your lucky you in a more civilised world we have our story here in africa where very little is known and your own family members dont even understand at times

      • Joyce, yes I feel very blessed. I’ve met other people with narcolepsy that are from Africa and there’s stories are hard to hear. Have you joined their support group? It’s called “Narcolepsy South Africa” on Facebook. Hope this helps you find a community that can support you.

      • Yes!

        We eat high quality, nutrient dense carbs paired with a high fat component (mostly coconut fats and things like fatty fish, nuts, and avocados). My family and I also identified food intolerances. My son has an intolerance to gluten and I have an intolerance to both gluten and dairy.

    Leave a reply