How many 22 year old kids do YOU know who live WELL with a chronic illness? Uh, I can’t say I know many other than one kid who has type l diabetes, which he manages pretty well. So when I read about a kid named Alex, who lives with dystonia—but still manages to bask in glory and excitement every time it snows, I had to know more!
What’s so unusual about this kid—in addition to being fiercely positive, is that one of his legs doesn’t work properly; he has difficulty walking because his leg and feet pull in. His muscles don’t function correctly because he has a mutated gene that causes a misfiring in the neurons from his brain to his muscles. He is like 250,000 other Americans who have this rare movement disorder.
But rather than sitting around, crying, and feeling sorry for himself when he was diagnosed at the age of 12, Alex set out to participate in life!
Did he let the fact that he was losing control of muscle movements freak him out? Uh, no! He jumped into life and somehow, (I’d love to know more about the support he received from his parents and family) he ended up an accomplished skier. He FLIES down a local ski resort in Colorado, effortlessly!
Even his neurologist can’t quite explain it because Alex cannot walk well moving forward, but can walk perfectly normally when he walks backwards. How weird is that? There is no explanation why he can ski so well, either!
Hmm…I wonder…is it the same principle that some people with Parkinson’s disease (another movement disorder) can’t walk without great difficulty, but, ironically, can ride normally on a bike?
If you or your loved one has dystonia, have you discovered alternative ways to move well with your body? If so, please post on Patient Worthy.
Go, Alex! Go!
