MDA Support Groups

[Guest guest]

Does anyone out there attend MDA Support Groups in your hometown? I

have never been to one, due to scheduling conflicts. Have they been a

help? I would like to know what I'm missing...

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[Guest guest]

, I regularly attend MDA support group meetings. They tend to

differ in content depending on the individual group and the group

moderator. Some groups concentrate on having disability issue

related speakers and some are pretty much social groups. The group I

attend currently gives the opportunity for everyone in attendance to

speak about whatever issues that they are currently dealing with. We

discuss and share issues such as insurance, housing, wheelchairs,

bracing, jobs, relationships, accessible transportation, mobility and

daily living aids, changes in the disease, ways of coping physically

and emotionally... The moderator has a topic for each meeting which

is often thrown out in deference to the needs of the attendees.

These meetings are a safe and inviting place to ask questions and

discuss aspects of your lives that are bothering you and to be fully

accepted. A place to talk about things that your " outside " friends

do not want to hear. Everyone at these meetings is empathetic to

your pains and difficulties and accepts you as you are, because they

all are experiencing similar things. The group encompasses all

neuromuscular diseases. Currently there are two of us with CMT; also

ALS, FSH, Friedrich Ataxia, limb girdle, Becker's. The successes of

established group members are always inspirational to the newly

diagnosed and give them hope for their futures, much like this group

does, only the bonds are greater, because you are face to face. Our

group meets on a Sat afternoon. Maybe you could contact the

moderator in your area and ask about the possibility of changing the

meeting to a time that would fit into your schedule. Ruth, Santa

Barbara