Quality of Life question..

October 8, 2005

Greetings;

It's been a while, but I wanted to respond to the quality of life question that

was posed a few weeks back.

My initial reaction is to say that I don't think one could make

a lot of generalizations about qualify of life and CMT safely; QOL is going to

depend on several factors to include severity of CMT (there is broad variation

here), attitude, individual sensitivity, levels of social support and acceptance

of CMT.

For example, someone who relies on AFOs or a wheelchair but has a very

supportive family, friends and colleagues, is likely to report a much higher QOL

than someone similarly affected without social support. I also find that my

own QOL has improved as I learned to

deal better with the anxiety of having a " progressive " illness.

While I am comparatively mildly affected by CMT (work full-time, no longer wear

AFOs, am pretty active), I used to be riddled with anxiety about progression

24/7 and that DEFINITELY lowered my QOL. Attitude changes and self-care have

really improved my QOL and outlook.

Although I could once say that I thought CMT lowered my QOL due

to not being able to wear lots of different types of shoes, not being able to

walk really far and general self-consciousness, I'm now almost (not entirely),

grateful to have CMT. I say this because my CMT has forced me to take my

overall health seriously, to exercise, to eat better, to take vitamins and to

take better general care of myself. If I did not have CMT, I may not have ever

chosen to do any of these things - I could have taken my health for granted and

not exercised, become overweight, etc... and could have had all sorts of OTHER

health problems because of that. I'll never know.

Anyway, I think QOL for CMT is slightly different than for those w/o

it, but if one were to get answers from all 1000 plus ers' there'd probably

be as many different responses as different individuals... Just my .02 c.

Thanks.

Peace, Marti

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