Growing Up with Duchene's Muscular Dystrophy

To those of you who read my friend, George Kouri's article What Life is like with a Severe Disability, this is another version of what could've been his life had situations been different. This is my life experience as a person with a chronic disability. Some of you might've read my first AC article, Duchene's Muscular Dystrophy - A Case Study and Clinical Synopsis, but that is mainly a scientific study of my disability and a rather dry read that many of you won't be patient enough to get through. This article here will be a personal account. I planned on an article such as this and discussed it with George briefly back when I first told George about AC but just never got to it. I have been busy with my own horror site for the disabled, Wheels of Terror (wheelsofterror.com - yes, this is a plug), which George and I began in 2004 (he writes reviews, helped with or slogan "We Put the DIS in DISmemberment" and helps promote us). I will write more about the site in a future article. Back to the meat of the subject.

My disability is Duchene's Muscular Dystrophy, which differs from George's disability. There are forty types of muscular dystrophy with different conditions, onsets and mortality rates. Duchene's is considered the most severe type but that isn't to say George's or others' types of muscular dystrophy aren't as bad; it's just that more people with my disability have learning disabilities (near 60 percent) and nearly 90 percent of us die around age 20.

Duchene's is a progressive disability which means that it gets continuously worse, like in stages. Each stage is a new plateau of severity which is the most irritating and painful aspect. Just when I become accustomed to the current level of severity and its associated problems, BAM! it gets even worse and I'm even more limited to do things able-bodied, or as I like to refer to as "walkers", people, and even my last level of limitations, take for granted.

I'll just take my life chronologically as it's the easiest way to see the evolution of my disability, which is unlike most other disabilities.