MDA Mailbag Summer 2011

by on July 1, 2011 - 10:57am

QUEST Vol. 18, No. 3

Letters to Quest: Choosing to have a child * Diagnosis explains past symptoms * CMT exercise warm-up tip * Mike Murphy articles inspire

Choosing to have a child

I’m the mother of a son with Becker muscular dystrophy (BMD). My father and uncle also have BMD, and I was well aware of my carrier status and its implications when my husband and I decided to have our own children without any medical intervention or testing.

I find it very difficult to find support, as every other mother I’ve met with a boy with BMD tells me, “If I’d have known it was possible, I wouldn’t have had my own kids.” And then I read articles in Quest, such as the one on PGD that say, “We had no choice. We wanted our baby to be healthy.” (Love Letters and Preimplantation Genetic Diagnosis, Quest, Spring 2011) As if to say I wanted my baby to have Becker muscular dystrophy just because I knew there was a risk, and I decided to take it.

I’d love to hear more stories from people who made the same choice as me, or would still choose to have their own children despite the odds. Every child is special, and I wouldn’t give my son up for anyone else, though I still pray we’ll see a cure soon.

Kristi Upton
South Sutton, N.H.


Diagnosis explains past symptoms

I am a 67-year-young woman with Charcot-Marie-Tooth disease (CMT). I never found out I had it until I was in my late 50s. I never believed I had it until my son also was diagnosed with it. He thought he had carpal tunnel syndrome.

After he was diagnosed and we talked about it, things started to make sense. We were both very clumsy growing up, and there were things we just could not do gymnastically. We are both still clumsy, but I have more problems with my feet and hands. It seems to get worse with age. We are both still able to walk, but I have more trouble getting around. I have had numerous back surgeries and neck surgery.

I consider myself fortunate because I am not bound to a wheelchair. I need one mainly if I am going somewhere where I am going to be walking a lot.
Diane C. Duncan
Mechanicsburg, Pa.


CMT exercise warm-up tip

I live with Charcot-Marie-Tooth disease. It is my experience that before exercising, especially in the colder months, my muscles have a hard time warming up. I discovered by accident a simple warming technique. One cold winter day I was having trouble getting warm, so I took my hair dryer, turned it on and put it under my blanket while I was lying down. It worked great!

You also can do this by sitting up in a wheelchair with a sheet around you like at the barber shop. Not only was I warmed, but I also could move better. I told my occupational therapist, Rudy Seward, and we started using this technique before therapy.

Rudy warns that there are some precautions that must be followed to perform this technique safely and effectively. The sheet on top of you must be a light sheet so the hot air can travel all over your body. If you have loss of sensation, you should work with a therapy professional due to the risk of burned skin. Always point the hot air up toward the sheet and never directly toward your skin or clothes. When you are completely warm then it’s time to exercise.

Michael Long

Little Elm, Texas

Editor’s note: For more on CMT, see the In Focus articles.


Mad about Mike

I like the articles from Mike Murphy; a lifetime dealing with the challenges of MD and not using them as an excuse, remaining motivated and creative; always inspiring.

Submitted online in response to From Where I Sit: Social Networking and Disability, Quest, Spring 2011.

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