Boys are active. Boys with DMD want to be active but they either can’t because of the muscle degeneration or because parents like me are trying to retain as much muscle mass as possible. Once the muscle is damaged, it will never regenerate and turns to fat. Without muscle on the skeletal frame your body cannot hold you up in any way. Hence, preservation of the muscles.
As a family we have to make choices. We have always been active. The boys learned to snow ski at very young ages. Logan tears up black diamond runs (and causes much panic and anxiety in me.).
I finally relented and allowed them to have quads. According to my husband “I don’t know what it’s like to be a boy.” Fair enough I guess. Still makes me nervous. We hike, bike, swim, water ski and more.
When we received the diagnosis most activities for Peyton came to a halt. He is a little kid so it’s a very delicate balance. I control what I can and let him be kid with his friends. He is able to walk up hill and up stairs but not down. The downward motion is what tears his muscles. We had no idea. First thing we did is move his bedroom downstairs. Logan moved right along with him, willingly. They want to be together and neither likes it when the other is not home. Bear is the bed filler during those nights.
Two activities he can do are swimming and bike riding.
We started heating the pool so that he can swim every day and all of us at night. It’s expensive but it’s our child. He also needs to exercise as the steroids cause significant weight gain if we aren’t careful. Our nutritionist is sweet as can be and scares the hell out me at the same time. We are known as the “frosted mini wheat family” and I think we may be failing miserably (More on that at a later date.)
The other activity he can enjoy is bike riding. We have great trails by our house to ride on. The only issues are that he tires out easily and hills can be difficult. Problem solved.
Bicycle built for two. Actually it’s an extension that makes any bike into a 2 person. Peyton LOVES it. I wish I could have taken photos as we were riding. He had his arms in the air like he just won the Tour de France. We love that this gives him the mobility to enjoy family activities. We are going to keep him active as long as possible.