Friday, May 02, 2014

Ask John

What would you tell the family of a newly diagnosed boy with Duchenne muscular dystrophy (DMD) as far as what they can expect in the coming years?

I would tell the family of a boy recently diagnosed with Duchenne muscular dystrophy, that in the coming years they can can expect many changes and challenges with him. These changes and challenges will create frustration, anger, sadness, and feelings of hopelessness. This is natural. But, there will also be happiness and moments of accomplishment. They have to focus most on the happy and positive things in the boy's life. His life, and the family's life is not over with DMD.

DMD takes things away as the years go on. The first, and most devastating thing that DMD takes away is the ability to walk. This usually happens around the age of ten. I was eleven when I could no longer walk and became a wheelchair user. It wasn't easy to lose the ability to walk, but walking had become a struggle, and I fell down a lot. Having to use a wheelchair wasn't all that bad because it relieved the struggle and the falling down. The wheelchair was like a friend. The wheelchair is nothing to be afraid of.

Over time their boy will lose strength in his arms and hands. This speed of this can vary widely. I didn't completely lose the strength in my arms and hands until my thirties. Now I can just move a few fingers, enough to drive my power wheelchair. For a long time, I was able to use the TV remote, to move the computer mouse, to feed myself, to brush my teeth, to write with a pen, and to turn the pages of books. As time went on, it became more difficult to do these things. But, they and their boy will find ways to improvise, find new ways of doing things, and find new things to do. The use of adaptive equipment will allow him to do what he may no longer be able to do, such as using a computer.

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