CMT in the News!

[Guest guest]

This article Appeared in my Local paper on Monday about the 2nd Annual

" Miles for a Miracle " walk for CMT research walk a thon though the MDA that

Wheeler and myself started last year in my hometown. All the money

raised goes straight for CMT research through the MDA.

I thought I would share it with for all to enjoy. :-)

Monday, May 10, 2004

Miles for Miracle walk slated for Bradford

By MERRILL GONZALEZ/Era Reporter

Still hoping to find a cure, people who suffer from Charcott-Marie-

Tooth (CMT) Disease and those who support them will turn out for the

second annual walk later this month to raise money for continued

research.

The Wheeler " Miles for a Miracle " walk for CMT research will

be held at 11 a.m. May 22 at Callahan Park, with a check-in time of

10 a.m. Even though the walk benefits them, affected participants

walk only as far as they can -- if they can.

CMT is one of 43 diseases for which the Muscular Dystrophy

Association offers programs. The money raised, however, will not be

pooled with other money the MDA raises; it will go directly into a

fund set aside for the research of CMT.

Following last year's walk, McClintick of Bradford, whose

husband and stepsons suffer from the disease, decided to get involved

with the campaign.

" I am interested in the research because it would be an advantage to

us as they raise money to find a cure for it, " said McClintick. " We

went to meet other people at last year's event. It was interesting to

find out about other people and what they have been through. "

McClintick said at that event those affected by the disease were

comparing their hands and feet, which is where the disease often does

the most damage.

CMT is a neurological disorder that damages the peripheral nerves,

which are tracts of nerve cell fibers that connect the brain and

spinal cord to muscles and sensory organs. The nerve damage causes

muscle weakness and wasting, and some loss of sensation in the

extremities of the body, feet, legs, hands and forearms. The disease

is a very common inherited disease named after the three doctors who

first identified it more than 100 years ago.

McClintick, 47, said he discovered he had the disease when he

was in his late 20s after undergoing a spinal tap to try to find out

why he kept having " muscle spasms. " Currently, he takes Neurontin to

combat the spasms he gets as a result of the disease. His sons were

tested after his diagnosis; results show that both 25-year-old

Jr. and 16-year-old also have CMT.

" It's a very painful disease. With your body thrashing all over, it

feels like you are outside of your body, " said McClintick. " It would

be easier if there wasn't so much pain and loss of mobility -- it's a

killer.

" I was active all my life -- now I can barely get out in the woods

(to hunt) like I always did, " added McClintick.

McClintick said he had served in the armed forces and had worked as a

mechanic. Though he has held some odd jobs since the diagnosis, he

said most of them didn't leave much time for him to rest between

activities -- a necessity with the disease.

" He was brought up to work, " McClintick said. " They (doctors)

told him to take it easy, but if he does he stiffens up. So he keeps

moving, and then he has to take a rest.

" CMT is strange, " McClintick added. " It works on people in its own

way -- it's an individualized set of problems. He has charley horses

that don't release. I sometimes rub them for him and sometimes it

works and sometimes it doesn't. I feel helpless. "

She added her husband still has strength in his upper body but not in

his legs.

" One side is more dominant in me, " McClintick said, adding that

he sometimes falls. " I lost all mobility in my foot, and I can't feel

them either. It makes you kind of blind -- if you can't feel it, you

don't know that you are starting to fall until you go over the

center. "

He said his symptoms continue to worsen each year, but he keeps

watching for any medical advances. McClintick added the word about

CMT is getting out and he's glad, because when he was first diagnosed

he found only one three inch paragraph about it in a medical journal.

Laurie Rafferty Pascoe, health care service coordinator for the MDA

in Erie, helped Tina get the walk-a-thon going last year.

Pascoe said wouldn't do the fund-raiser unless she knew the

money was going directly to the research for CMT.

She called " a real go-getter. "

and her son both suffer from CMT, her son having been a " toe-

walker " when he was born. When he was three-years-old, physical

therapy stretched the tendons in his foot. He then wore braces until

he was five-years-old.

His mother has a loss of hearing due to the disease, and realizes she

may have had it as a child because she couldn't do cartwheels.

enlisted the help of Wheeler of Eldred to help with the

fund-raiser last year, and she will continue to help this year.

Wheeler and her son suffer from the disease; he had been

a " toe-walker " too and uses a wheelchair when he goes shopping with

his family. For her part, Wheeler has trembling in her hands and

loses her balance easily, and also has a difficult time walking.

There is no set criteria for the disease or its progression, and some

individuals may first notice symptoms into their 30s and 40s.

Tina

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