Having Duchenne muscular dystrophy brings its fair share of restrictions. You can’t eat this, or you’ll become overweight because of steroid use. You can’t do that, or you’ll damage your muscles. You don’t have time; you need to rest.
The “can’t” statements seem to overwhelm the days. Yes, it is a reality of living with a neurodegenerative disease. But it isn’t everything, and there’s no use in dwelling on them.
Throughout my life, I’ve done my best to identify the “can” statements and focus on them. I can type on a keyboard. I can write. I can love.
When I start to focus on the negatives in life, my emotional well-being takes a dip. That starts to wear on your psyche.
Side note: I’m not just living in an imaginary world where everything is coming up roses. There’s a difference between ignoring all challenges in life and deciding to put more mental focus on the positives in life. I don’t ignore my issues, rather I go to war with them by pursuing activities that aren’t dictated by my disability.
Thanks to improvements in accessible tech, that list of “cans” is becoming longer. Adaptive skiing and sailing are two activities I learned about at a CureDuchenne Cares event in Virginia. Power wheelchair soccer is also growing in popularity.
Math and science clubs at school help you work your most important muscle — the brain. Reading improves your vocabulary and gives you material to discuss with friends. Watching movies requires nothing but your eyes and attention.
There’s plenty of variation in that list of activities. You don’t have to just be into writing like I am. A boy with Duchenne won a gold medal and set a record in the Paralympics for air rifle shooting. I never would have thought that was possible until I read that article.
As you’ll find, none of these activities require much physical exertion. It’s hard to tell a child with Duchenne that. Trust me, I was that boy. But the great thing is as kids get older sports become less a part of life as jobs take over, girlfriends are made, and people complete school. Just hanging out with friends for dinner becomes more prominent. And that’s something I can definitely do.
When you think about it, there’s plenty of possibilities. I can’t guarantee Duchenne will go away (though we are trying our best to cure it), but I can tell you there’s plenty you can do. Finding out what that is will help you create a fulfilling life.