CMT Artist 'likes the challenge'

[Guest guest]

Artist 'likes the challenge'

His mother and home health aide help him cope, but he longs for his

own van to give him mobility

Story and photos by Greg

http://www.azstarnet.com/accent/183730

With a firm grip on his paintbrush, McWhirter, 26, nods his

head up and down, side to side. He pauses, cleans the brush, and

applies a dab of white paint to lighten the blue sky. A lakeside

landscape at sunset takes form on the easel before him.

" There's not much work put into it without the detail, " says

McWhirter. " I like the challenge. "

Coming from McWhirter, that's an understatement. An active child who

loved the outdoors, he gradually lost the use of his arms and legs

during his mid-to-late teenage years. Instead of giving up, he re-

taught himself to paint, among other things, by using his mouth.

McWhirter suffers from a neurological disorder known as Charcot

Marie Tooth, or CMT, named for the three doctors who discovered it.

The CMT Association's Web site says it's " the most commonly

inherited neurological disorder, affecting approximately 150,000

Americans. " In the same family as muscular dystrophy, CMT differs in

that it affects the nerves that control the muscles, causing

degeneration in both. It has no effect on brain function or life

expectancy.

McWhirter's case is more extreme than most. At 6 feet tall, he

weighs 59 pounds. His mother, Barbara Muterspaugh, gets him up and

ready each day, which often takes an hour. Muterspaugh's back

problems make it hard to lift or carry her son.

Once awake, McWhirter navigates his wheelchair around the house

using a joystick he moves with his chin. His home health aide and

good friend Molly Roepke spends about 15 hours a week with him. She

acts as his hands on many of the projects he takes on, from fixing

computers to building projectors. McWhirter's know-how comes from

the Internet. " Good old Wikipedia, " he says. " Google is wonderful.

I've learned more just using the Internet than I did in school. "

McWhirter ventures outside a few times a day, but only to his

backyard for an occasional cigarette. The gray brick fence he faces

is a stark contrast to the colorful landscapes he paints. He would

like to go farther, but his family can't afford a van with a lift

for his chair.

While there are services available, McWhirter has found them too

difficult to use. He longs for his own van to give him the freedom

he wants. He's due for a doctor's appointment and an evaluation of

his five-year-old wheelchair, but, most important, he wants the

chance to get out and live his life like anyone else would.

[Guest guest]

That's an inspiring story.....but it seems very extreme for his CMT to be that

bad. Why does he weigh so little? Do you think he might

have a rare form of CMT?

Amelia

[Guest guest]

I thought the same thing. Under the comments section, there is a

little mini-article about how his teeth were all rotted (which was why

he could not eat) and a dentist generously donated a set of impants for him. He

was so excited that he would eat again. Sounded like he

hadn't been able to bite down for three years.

An interesting story and I get the feeling this is a small window into

a much larger tale. I hope that he feels better soon.

Lenka