Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 , as I said once before I went to 1 CMT support group meeting at UCLA when I was in my late 20's. A group of older women sitting around complaining and whining. And a Dr. and Orthotist, neither of whom have CMT, 'telling' us what we needed, it was awful. I already had lived with CMT for 17 years and knew about the topics they presented. I left at the break and never went back. I would have liked to have discussed things like we discuss here at CMTUS back then. Everything I have learned about effective support groups has come through my involvement and continual participation in 12 step ones. There people find great camaraderie, there is shared refreshment duties, and meetings are led by members. In other words no 'experts' telling anything, just peer to peer sharing 'what works'.There are focused 'topic' discussions.These meetings are highly successful and are also good for leadership training. These groups are also daily, sometimes many a day. Alot of people get excellent support that way, and even people who do not have an addiction sit in to learn about the program, steps, etc. Truly remarkable. I created this group at CMTUS because those of us with CMT need support. But we are scattered throughout the world and the Net brings us all close. I look forward to all our discussions. And there are no 'experts' here, just peer to peer sharing our CMT etc. As they say in 12 step programs " stick with the winners " ! And all of us here at CMTUS are " winners " ! Gretchen jege6666@... wrote: > > Hello the Mitchel House, > The following is not meant to discourage you, only to show some of > the pit falls. > We have a CMT or we had a CMT support group, I'm not so sure where it > is at this point in time. Anyhow, one of the problems I found we had was > keeping everyone's interest. and it soon begin to effect attendance. > Presentations by doctors like neurologists, geneticist, orthopedic, physical > therapist, occupational therapist, nutritionist, someone from Soc.Sec. (on > disability Insurance) , etc., would keep everyone's interest. We had people > coming from all over the state and some out of state, so you have to have a > good program to give them a reason for coming. We started out with around > 25-30. The last meeting I went to there was only 4. We tried collecting dues > to cover materials used, coffee and cookies for a night and maybe a social > gathering some where along the line, but the attendance dropped even more. > There is only so much talking of personal problems before people start to get > bored. It seems that support groups start out like a house a fire then > dissipate over a period of time, but I believe that's par for the course. I > hope you have great success with yours. > E > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 In a message dated 7/27/00 6:54:10 PM Pacific Daylight Time, liliwigg@... writes: >> , as I said once before I went to 1 CMT support group meeting at UCLA when I was in my late 20's. A group of older women sitting around complaining and whining. And a Dr. and Orthotist, neither of whom have CMT, 'telling' us what we needed, it was awful. I already had lived with CMT for 17 years and knew about the topics they presented. I left at the break and never went back. I would have liked to have discussed things like we discuss here at CMTUS back then. >> ************************ Gretchen and all, I'm sorry you had a bad experience with you 1st CMT support group. Of course they are not all like that.... Most of the speakers we have had in our group have either dealt with CMT or have CMT. Dr. Bird's sister has CMT, he spoke on the different genes, Dr. Sampson has CMT, he is an Orthopedic surgeon, Mike Canton's daughter has CMT, he is a Pharmacist... That left LaVonne who is an RN that spoke on Pain Management - she didn't have CMT. Another thing we do if we have a special speaker is to allow 30 min. for questions and answers. If we don't have a speaker we discuss our recent dealings with MDA or a therapist, Doctor, Orthotist, Pediatrist and any new trick or gadget we found to help us get around. Remember a support group is for all. You can't go just to get get get. At our support groups it is a get and give. We ALL get and we ALL give. That's what makes it survive. Jeanie I love the support group here at CMTUS, but I also need the one on one in person support, just to see that there is someone else like me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 have u tried calling the hospital where you're undergoing surg? lori h. > I am scheduled to have the surgery Jan 04. I am looking for a > support group to attend in the Northern Va area. Any suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 have u tried calling the hospital where you're undergoing surg? lori h. > I am scheduled to have the surgery Jan 04. I am looking for a > support group to attend in the Northern Va area. Any suggestions? Quote Link to comment Share on other sites More sharing options...
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