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How does narcolepsy affect our exercise?

Narcolepsy affect everyone differently. In some cases, it might make maintaining a workout routine difficult or impact a persons daily energy levels.

Does your narcolepsy affect your ability to exercise? How do you stay active when living with narcolepsy?

If you're active, let us know! What are peoples favorite forms of exercise?

  1. I am thin at age 68. I do not attribute this to good eating habits. Narcolepsy, however, has made me fidgety. That and Sudafed were my coping mechanism when I was younger. Before I was diagnosed with narcolepsy. At work I kept a drawer full of junk food. I had a job involving scientific programming. I'd feel sleepy and bounce around the lab. Walked at lunchtime most days. Biked 12miles after work. At 5' 8" I weighed 125 pounds. Before and after having two children. Now I weigh 130 pounds at age 68. My husband took tirepizide because he became obese eating the same foods I do. I have hypertension. My mother at age 92 is my height and is healthy and she weighs 175. So of all the surprising comorbid positions I'd expect this one I don't have. I'm if anything too skinny. I read that a higher BMI of moderately overweight is the sweet spot for mortality. So I'm not boasting at all. I'm more in danger of losing weight than gaining it. It's not funny. After my second abdominal surgery I left a skilled nursing facility weighing 103 pounds. That's not good looking. So I'm not thin because I'm healthy. I have ample physical energy sometimes - walk those 10,000 steps but I'm an overweight person in the wrong body. Except that I can't chow down the way my husband with his weight problem could. He was skinny as a rail back when he was 19. 6'2" and 155 pounds. Gained 110 pounds the final 50 during COVID being sedentary because of bosses who kept him tied to his desk all day. Calling random meetings for 5:00 pm when he's been working since 6:30 am. Now he sleeps 7 hours plus takes a nice nap. I hardly sleep at night. No naps. He's going to outlive me. Oh well. But the narcolepsy rests at the core I think of why I can't function normally. I seem normal but I'm still struggling. I refuse to make many plans. I'm not cognitively impaired but I'm a big reader. I got a phD I'm mechanical engineering a long time ago and haven't stopped asking questions. But narcolepsy is so hard to figure out for me. What this obvious missing component in my brain at age 68 is doing to me. The science has developed since my first sleep test. But I ain't fixed yet. It would be nice if the folks in Japan doing research could give me back a normal life. Because this really sucks biggly. Not better not worse just different from day to day. No cataplexy anymore. But I don't like this now. I'm sick and tired of this. Give me four years without it before I croak.

    1. I hope you get those four years and more, . Have you ever discussed your weight issues with your doctor? If so, has your doctor been of any help? - Lori (Team Member)

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