Re: support groups

[Guest guest]

In a message liliwigg@... writes:

<< I ask so many questions because I have met so many people with CMT, and

while we all have it, there's such a variety in our experiences and I am just

so interested in how others with CMT live in this world! >>

There is a very active group in Oregon, too. There were 18 people at the last

meeting. Sometimes they have a speaker, other times not. Theirs is affiliated

with some neurologists now, which attracted more people. Just being able to

talk to others, like in the chat rooms, but in person, can be helpful. I've

never attended one, but MDA is interested in starting a group in my area,

sort of. It might be all of the MDs, not just CMT, so it may not be so

helpful.

The problem with sorting by age, quality of life or gender is that we are so

spread out. I hear it's hard enough to get a dozen people of any sort to

attend a meeting. I think the socializing can be great, perhaps moreso if

children are involved, but many CMTers have never met another CMTer in person

(perhaps other than family).

Like your experience Gretchen, people who are not very affected can be upset

by people who are more seriously involved. When one takes time to get to know

people, walkers, wheelchairs and such aren't scary. Some people who are

mildly affected may be upset by Crabtree's newsletter. Somehow they

only see the stories about difficulties. She includes a lot of copiing hints

that people NEED, too, including info about surgeries, hand splints, AFOs,

scooters and such. And positive stories. If you are in denial you only see

the negatives, IMO. (That is a general YOU, not a specific you. LOL) I think

it may involve a lot of denial. " I'll never need to use THAT! "

Some people never see the need for a support group, and others benefit from

them. We are all different, once again.

Friday I had the pleasure of meeting Pool, a CMTer from the SW Oregon

coast. We were able to chat for 2 hours, and we learned even more about each

other than we have by email or in the MGH chat room. I got to see her " moon

boots " and her van with the lift for her Jazzy chair. She is my second

in-person CMTer, the first being Angel.

Kat in Seattle