Learning to Live with Neuromuscular Disease: A Message for Parents

November 2011

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It’s All Where You Put Your Focus

When I was 18, I informed my doctor I'd be attending college in the fall. Later, he asked to speak to my parents privately. He told them that, because I have Duchenne muscular dystrophy (DMD), they shouldn't expect me to survive to graduate.

Scott R. Bennett

Well, I finished college. I’m now in my 40s and working as a software engineer. Ironically, five years after making that statement, the doctor passed away.

Most predictions are based on statistical averages and not absolute certainties. In fact, the most accurate prediction that can be made is that you and your family should be prepared for anything.

Maintaining a positive attitude is certainly difficult, but just as certainly it will help your child do the same. I think the most important thing my parents did for me when I was growing up was to treat me the same as my nondisabled brother and sister, with the same expectations, while still helping me to deal with the physical limitations of my disability.

I hope you and your family will learn together how to live with and adapt to your child’s neuromuscular disease, like making it part of a school project. You’ll probably find that by working together, you’re helping both your own and your child’s emotional stability move further along. Yes, challenges lie ahead, but you’ll also deal with those together, when the time comes.

When I was 15, my dad asked me if I was mad at God for giving me DMD, because he was. My response was that I wasn’t angry at God or anyone else. Someone had to get this disability, so why not me?

My disease was due to a random genetic mutation and no one was to blame. I had to learn to adapt my life to my disability, I explained. I think that response made my father feel a lot better about my having DMD.

I’ve never felt that I was facing a fatal disease, but rather a disease that meant my life span would probably be shorter than average. I guess it’s all in how you look at it. Rather than focusing on quantity — how many years of life — focus on quality — how much life in those years.

Scott R. Bennett
Software Systems Engineer
Taunton, Massachusetts