Family members denial of CMT

[Guest guest]

- this is a tough one. BTW I'm also 48 and was diagnosed

(mis-diagnosed, that is) at age 12 with Friedrich's Ataxia. My

family's denial is not so open as in yours. I have always had

questions about how my " feet " are doing; I quess because that is the

most visible part of the CMT. Any attempt to explain the disorder

further was met with glazed eyes. As a teenager, my father never

really said anything and my mother wanted me to stop doing anything.

Over Christmas, I discovered a nephew's " curled-up " toes and, after

some initial discussion with my brother, nothing more has been said.

I bring it up every once in awhile and discuss the genetic

implications. There is squirming, but I think they do listen a little.

It is so hard when we can't get the support we need from family. I

have been so thankful for this and other forums and a local MDA

support group I attend. We need one another. Hang in there.

Jim