Life w/ CMT (best article yet!)

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He is receiving email, but I don't know his email address.

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http://www.philly.com/mld/philly/sports/5282498.htm

Posted on Fri, Feb. 28, 2003

MacCulloch aches to play again

But future uncertain with rare disorders

..By PHIL JASNER

jasnerp@...

HE DOESN'T WANT to be seen as a profile in courage. He's not interested in

being a hero.

Todd MacCulloch would be more than happy just to be good, old Todd MacCulloch

again. And none of the doctors he has seen can really tell him that.

All they can tell him is, he has elements of chronic inflammatory

demyenlinating polyneuropathy and Charcot-Marie-Tooth disease and that his

future is uncertain.

CIDP is a disease of the peripheral nervous system, neither hereditary nor

contagious, that is being treated with infusions of immunoglobulins; CMT is a

genetic disorder for which there is no specific treatment. In both cases,

symptoms include pain, weakness, numbness and tingling in the hands and feet

and difficulties with coordination and balance.

The same 7-foot Todd MacCulloch who went to the NBA Finals as a backup center

with the 76ers in 2000-01 ad started at center for the New Jersey Nets in

last season's Finals now sometimes struggles to climb stairs. Things that

once came naturally - his ability to catch passes and finish plays was among

his best attributes on the court - have become a chore, sometimes beyond his

grasp.

He doesn't expect to resume playing any time soon, even though he hopes to

continue light workouts and travel with the team. The Sixers, more concerned

with the person than the athlete, don't expect him to play the remainder of

the season. If CMT is, in fact, the primary problem, it seems unlikely he

would play again, but he could live an otherwise normal life.

" I wouldn't expect to see myself back very soon, " MacCulloch, 27, said

yesterday. " I know the season's winding down, but I haven't written anything

off. I wish I could play tomorrow. I don't expect anything miraculous. "

He was evaluated by two specialists in Philadelphia and another in Boston.

His mother and older brother were tested for CMT, even though there is no

singular test for the disorder; his mother might be evaluated again at the

University of Washington Medical Center, a strong research site that is

closer to the family home in British Columbia.

He is flabbergasted by the flow of e-mail from well-wishers, people who have

been diagnosed with CIDP and/or CMT. Wherever he can, he has been more than

willing to reach out, share experiences and offer support. He has a new

appreciation for true adversity. He got that, in part, from Senque Carey, a

former teammate at the University of Washington now at New Mexico.

Carey suffered a spinal-cord injury in a game against Northwestern State on

Nov. 25; he took a charge, landed on his head and was motionless for 10

minutes, temporarily paralyzed. He had no movement in his legs for 2 weeks.

" I called him, expected him to be down, depressed, " MacCulloch said. " He was

talking to me as if we were old friends, talking about my career. This guy

didn't know if his legs were ever going to work anymore. I need to call him

back, ask how he [handles it]. He's much better now. I want to ask him where

his strength came from. "

MacCulloch, ever gracious, said: " I haven't had a ton of adversity, haven't

had a lot of people close to me pass away. This is the biggest test I've had

so far. "

He has a greater fear of the unknown, which is why he has tried to identify

his enemy. He knows there are various levels of both CIDP and CMT; he knows

people respond differently to various treatments and medications. He knows

both can worsen.

" Sometimes they say if you have CMT, that's not a good thing; sometimes they

say it may shorten your career, that you may have to quit before you want

to, " he said.

He was asked whether it helped that doctors seemed to think he had " a mild

case " of CMT.

" That's like a mild salsa, " he said, smiling at his little joke.

" I've been told, " he said, " that I could be able to live pretty much a normal

life.

" My hands don't bother me in an everyday setting. I only notice when I'm

doing [specific things]. My feet just feel strange most of the time. Not an

excruciating pain, but it drives me crazy, only because I always know they're

there...a burning, usually numbness, sometimes tingling, spasms a little.

" It's very strange. My dog doesn't want to be anywhere near me. I can walk up

the stairs and just be kicking them, because I'm just not really aware of

where they are. I haven't fallen down yet, which is a good thing. I just find

myself teetering quite a bit. "

He has heard the foot problems described " as if you're walking on pillows. "

He does not know whether trying to play again would worsen his situation;

there seem to be no cases of professional athletes who have had either

disorder.

" I don't want this to get any worse, " MacCulloch said, " and we really have no

way of knowing. "

The first series of infusions helped to some degree, but the doctors have

explained that relief can be quick or take time, or might make no difference.

" I've heard some people call it a miracle drug, " he said. " Some people have

blocks in their neural pathways and [the treatment] will instantly get rid of

the blocks. I don't really feel different. I've been told that sometimes it

takes time, that sometimes it stops the progression [of the CIDP].

" Everything I've read [indicates] the more you can stay conditioned, do light

lifting, stay physically active, the better. I'm not sure physical

conditioning would really have much to do with a genetic disorder. But no one

is saying, 'You need to sit on your couch the rest of your life.' "

He copes as best as he can.

" It's better now, " he said. " Slowly, you start to worry less about what you

can't control. I don't have any answers. I don't want to spend my entire life

wondering what it was. If you understand it, put a name to it, it's easier to

deal with. "

He's reaching, and knows it. He's just a guy fighting an enemy that seemingly

came out of nowhere and refuses to go away. Todd MacCulloch just wants to be

good, old Todd MacCulloch again.

He'll take all the help he can get.

====================================

Kat

Seattle WA USA

http://www.icewindow.com