MD and Me - March 13, 2008

Q. What is your handicap?

A. I have Muscular Dystrophy (MD). It affects the muscles by making them progressively weaker. This means that I have minimal use of my arms and legs and I use a power wheelchair to get around.

In addition, I have a tracheostomy and use a ventilator to breathe, as the lungs are controlled by the diaphragm, another muscle. These machines basically keep me alive; one minute without the ventilator and I faint. My trache tube needs to be replaced with a new one every two weeks, since it's made of plastic and gets crusty, increasing the risk of infection. I also have a feeding tube because the muscles that I need to swallow are very weak. I can eat a little, but not enough to get proper nutrition.

As you can imagine, I always have to be with someone who can take care of me.

The doctors first thought I had Mitochondrial Myopathy, but discarded that after more tests. I may have a new type of MD and I'm thinking of naming it. Hearing, "Mr. Smith, I'm afraid you've contracted a condition called Superwalking," just before hearing, "which means you'll soon be learning to walk without the assistance of legs," would in some way soften the blow. I'm considerate like that.

Posted by HotWheelz at 6:45 AM

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