55 Years With Type 1 Narcolepsy
I was 26 with one daughter, and 2 more yet to come. Lived in rural Oregon, 68 miles to a doctor and hospital. My wife didn't drive. Besides making a living, I was the driver for the family.
Finding a doctor
I was one of the lucky ones. I picked a doctor from the telephone book. I spent 25 min talking and telling what was going on in my life. This was in 1967, in a town of 10,000. This was before sleep tests or sleep centers.
My narcolepsy diagnosis
I was diagnosed based on my symptoms and the only medicine available for narcolepsy was an amphetamine. There was no internet, and little information to be found anywhere. I never talked with another person with narcolepsy until I went to a support group in 1987.
Working with narcolepsy
I worked in sawmills and plywood mills. In 1981, most of the mills were closed so I worked in the woods running tree shears up until 1996. Most of the time I was outdoors or in open areas in the mills. I quit working in 2004, went home, and took over running the house.
Finding a reason to go on
My wife suffered from lung problems. She was on oxygen for over 10 years. She got to where she had no energy. With her telling me what, and how to do it, we did well. I lost her in July of 2016. She was my reason for being able to carry on and cook and clean and make life bearable. I lost so much when I came down with narcolepsy with cataplexy (NwC). I managed to care for my 3 kids when their Mother left. Ages 6 to 10, for 1/2 years. Then a wonderful lady married me and helped raise our kids. I was doing so so after my wife passed, but I was doing less and less.
Never driving again
November 2019 I was coming back from shopping, 8 miles from where I lived. I had a cataplexy attack, crossed the center lane and passed 3 cars. I made contact with one of them and broke my side mirror off. Nobody stopped. I went home, reported it to the police, and never heard anything back. I called my daughter up and had her pick up the car on Sat. I never drove again. I moved to Salem, Oregon where they had a bus service. I am 82 now, live alone in a 50' trailer. For all those years I had reason in my wife and kids to battle narcolepsy and always keep going. Now I am tired and see no reason to keep going. For 55 years I was always motivated, now I am into resting.
How important is following a daily routine for managing your narcolepsy?
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