A Better Understanding -- Local women start support group for CMT Disease

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A Better Understanding -- Local women start support group for CMT Disease

http://tricountycitizen.mihomepaper.com/news/2010-07-11/Health/A_Better_Understa\

nding__Local_women_start_support_.html

By Hillary Grigonis Staff Reporter

Up until a few years ago, there were several little things that Carolyn Koski

didn't have an answer for. When she was little, she couldn't do a cartwheel. She

still has trouble with balance and is often fatigued.

However, when Koski found an answer in 2001 with a Charcot-Marie-Tooth (CMT)

disease diagnosis, she still had questions. But with the help of Montrose

resident Ellen Albert, Koski formed a support group that has helped her, her

family and many others understand CMT disease.

You really don't see anything wrong, so its hard to understand CMT, " she said.

" This group has helped my husband better understand what I am going through. "

CMT is a non-fatal genetic disorder affecting the peripheral nerves in the

central nervous system. A normal nerve cell communicates by sending signals down

an axon to other nerve cells, or neurons. The axon is insulated by the myelin

sheath, which prevents the signals from breaking up. CMT disease affects the

axon or the myelin sheath, depending on the type, resulting in weakness and

numbness in the legs, feet and sometimes hands. The disease's symptoms often

vary from person to person.

Its like a short curcuit in an extension cord, " Koski explained, " You get shocks

and some feeling, but the whole thing isn't there. "

Albert said she has known she had CMT disease all her life because the disorder

runs in her family. Her nine-year old daughter also has CMT disease.

It has been nice to find other people in the area who have it too, " she said.

Koski and Albert started the CMT Support and Action Group for the Chesaning area

in April. The group averages about 14 members at the meetings, held every other

month. The group includes a variety of people from different areas and ages.

Some come from as far away as Waterford, Lapeer and Bay City. The youngest

member is a nine-year-old boy who was recently diagnosed.

The support group keeps variety in their meetings, sometimes just talking and

other times watching a video or talking with a health professional. Recently, a

representative from True Touch Therapeutics visited the group, offering tips on

managing and decreasing the intensity of the symptoms. The group also has plans

to bring Dr. Shy, a doctor specializing in CMT, to a meeting in the

spring.

Koski was diagnosed with CMT Type II after several tests to determine what was

causing the numbness in her legs. She now wears leg braces for extra support.

The diagnosis was relief in a way but it was also scary in a way because I knew

I wasn't going to get better, " Koski said.

The support group meets on the second Sunday of even numbered months at the

Chesaning United Methodist Church. For the August meeting, the group is planning

a potluck at Showboat Park. To learn more about the group, call Koski at (989)

845-5731 or search for the group on Facebook.