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Chuck’s Story

January 17th, 2024

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“At 63, my health issues were answered with the Type 1 narcolepsy diagnosis…”

How has your life been impacted by narcolepsy and/or idiopathic hypersomnia?
I was diagnosed with Type 1 narcolepsy late in life. Originally, I had planned to continue my profession as an adult educator and improvement consultant into my early or mid 70’s. At 63, my health issues were answered with the Type 1 narcolepsy diagnosis. My work required me to travel extensively, and after several close calls on the interstate and in the airport, it was clear that I could no longer travel safely. I had to surrender my profession and retire much earlier than planned.


What is one thing you’d like people to know about narcolepsy or idiopathic hypersomnia, and the challenges that you’ve faced?
For me, a typical 24-hour day is actually made up of 4 mini days. This is because my sleep usually follows four identifiable periods of sleep during the 24 hours. These mini days do not include the unexpected naps that haunt my waking hours. Each of the four periods seem to me to be the same as a day for people without narcolepsy.


Have you faced barriers to care? If so, please tell us about these barriers (e.g. geographic location, financial, family support, etc)
I have been extremely lucky. I had no issue with obtaining disability status once diagnosed.

I am married to an ANGEL who has been with me every step of the way. She patiently keeps me straight during my confusion and challenges me whenever things get a bit rough. Though she isn’t exactly sure why, she seems to understand the hallucinated woman at the foot of the bed that I talk to from time-to-time, and mistaking her arm in the middle of the night as a vicious python as I try to heave it out of the bed. She reminds me of the progress we have made thus far and helps me see that there can still be joy and fulfillment in life, even with narcolepsy.

We are empty nesters. Three of our daughters have families of their own. Another daughter has given us, well, a grand dog. We are a bit stretched out, but not like other families. No one lives more than 3 hours from us. However, we do not get together as much as any of us would like. When we do, our girls are careful that I am seated with cold water when we catch up, just in case the laughter is too much for my cataplexy to stay quiet.

 

What lessons have you learned that could potentially help others living with this disorder?

  1. Don’t rage against the disease. No matter your determination and resolve, it will always win! Instead, learn your pattern of the disease and adjust your life accordingly to its ebbs and flows.
  2. Eventually develop your own routine that maximizes your rest, alertness and energy. Follow that routine as close as possible. Also understand the dangers when life drives you off your schedule. Make choices and plans to minimize the impact of those situations.
  3. Understand that when you find yourself in the narcoleptic ‘fog’, you are not yourself. You are likely to be irritable and impatient due to the sleep deprivation. Watch what you say and do when interacting with others. If feelings are hurt, be quick to make apologies. Also be quick to forgive yourself.
  4. Keep an eye on your weight and health in general! In my case, the inactivity of my new daily schedule meant that I did not burn calories as before. I puffed up 20 pounds in no time. I am now trying to adjust eating habits, foods and exercise to return to my pre-narcoleptic weight.

 

What is one thing you’re proud of as someone who is affected by narcolepsy and/or idiopathic hypersomnia?
As I began to understand and experience how my life was being altered by narcolepsy, I started down that road, seeking pity from any who would give it. With the assistance and support of my wife, four daughters, other family members and friends, I was able to avoid going too far down that path. I’ve realized (with help!), that life could have dealt me a much, much worse hand than narcolepsy. I am proud that I have accepted this fact. Finally, I am grateful that I can still enjoy my role as husband, father and grandfather to my family. True, this isn’t exactly how I pictured my retirement years, but maybe, just maybe, that imagined picture wouldn’t be nearly as rewarding as this new reality!

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Date Created: January 17th, 2024
Last Updated: January 17th, 2024