I Have Charcot-Marie-Tooth Disease.: Abel's Story. (Part One)

[Guest guest]

A man lives with a little understood neurological disorder that's caused

increasing disability.

I Have Charcot-Marie-Tooth Disease.: Abel's Story. (Part One)

By Lynn Vidra, The Texas Tornado

http://www.authorsden.com

My name is Abel Rosenheimer. I live in Alpena, Michigan, with my brother and

his wife; my brother's wife, who is a nurse, acts as my primary caretaker.

I have a little-understood disorder called Charcot-Marie-Tooth disease, which

is, basically, a disorder of the nerves; it is one of the most common

neurological (neuromuscular) disorders, affecting as many as 37 out of 100,000

people in the US. It causes increasing weakness in the arms and legs,

increasing insensitivity to touch (neuropathy), and other problems.

I now use a wheelchair. I have used a wheelchair since I was thirteen years

old. (I'm now forty.) I was first diagnosed with this disease when I was ten

after having painful tests; by the time I was 11, I was walking with a pair of

crutches and wearing heavy steel braces on my legs; I could no longer walk by

myself.

Each year, my disease has gotten worse. I am now unable to walk,

dress/bathe/feed myself, or use the toilet on my own, and it's getting harder to

move my shoulder and neck effectively. I can talk though (and I can talk your

ear off if you'll let me! LOL); I am thankful for that! (To use the computer,

I type with a pointer stick attached to a band I wear around my head. It's

difficult, but I do manage quite well, as you can see.)

I may eventually lose my ability to speak/swallow/breathe, but I am not worried

about that as of this time. Right now, I plan on enjoying my accomplishments

rather than focusing on the negative aspects of my disease.

As a result of my disease, I am required to watch my weight (added poundage can

cause pressure on my joints, which would only make things worse), maintain my

strength/flexibility by participating in bi-weekly therapy sessions (I have

physical, occupational, and water therapies to keep me supple and not make my

problems worse), and not to get too emotionally upset (emotional upsets can only

make my symptoms a lot worse).

I sometimes get frustrated because I can no longer go on long walks with my

brother and his family, feed, bathe, dress myself, or brush my teeth and hair,

as well as going to the toilet; this is especially degrading for me.

I sometimes have days where I feel sorry for myself; it's only natural,

especially after a day of fighting with the government in trying to get my SSDI.

The damn people keep telling me I am not disabled enough; just how disabled do I

have to be in order to get results?? I cannot work; I can't even take care of

myself or do a lot of things! It's crazy!!

Well, I am going to go; time for supper. Besides, I'm starved.

You haven't heard the last of my story; until next time, this is Abel

Rosenheimer saying so long! Talk to you again soon!

~Abel.