Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Would someone enlighten me on what actually goes on now in a CMT type support group? Are these groups for adults or children or both? Are people all ages and stages of CMT, or are these 'grouped' individually? Is there an equal mix of women and men? Do they include non-CMT family/spouses/significant others/friends? Are their speakers? How often do groups meet? Do you follow a 'program' like 12 step support groups? Is there a cost? Who are the 'leaders or moderators' - do they have CMT? I went to one CMT 'support group' years ago and all it was was a bunch of old women in wheelchairs sitting around listening to a Dr. tell THEM about CMT! (this was about 20 years ago and I never returned) So, just wondering if CMT support groups have evolved? Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 >Would someone enlighten me on what actually goes on now in a CMT type >support group? Are these groups for adults or children or both? ****** ours is mainly adults, but children are welcome also ******* >Are people all ages,stages of CMT, or are these grouped'individually? ****** ours is not grouped, we have had as young as 12 and as old as 73, some are slightly affected (some loss of movement in feet), other's more severe (hands that are withered and total drop foot), some walk in without help, others use canes, arm crutches, and wheel chairs. Most of us don't know what type of CMT we have. ********** > Is there an equal mix of women and men? ************ we usually have more women by 2 or 3*********** >Do they include non-CMT family/spouses/significant others/friends? *********** ours include family members and others are welcome. Anyone that has anything to do with CMT, or that wants to learn about CMT is welcome in our group. 2 months ago we had 2 student nurses sit in on one of our meetings.... ******** >Are their speakers? ******* yes, we have special speakers when we can. Usually up to 4 a year.******* >How often do groups meet? *******We meet every 3rd Saturday of each month (Excepting for December). ******** >Do you follow a 'program' like 12 step support groups? ******* No, we don't have a program. If there's any business to take care of it gets handled first, then if there are new individuals they are offered the floor for any questions or concerns they might have. If no one is new then the group shares thier latest knowledge. It's never been boring yet. ******** > Is there a cost? ****** we have a $5.00 yearly dues that helps pay for mailing's of Newsletters, plus anytime we have a special speaker we leave a basket out for donations to be given to the speaker. ******* >Who are the 'leaders or moderators' - do they have CMT? ****** Darlene (Blzerbabe@...) is the moderator of our group at this time. Her husband has CMT. In the past all the leaders were individuals with CMT and each of us (including me) found it to be more than we could handle alone. ****** >I went to one CMT 'support group' years ago and all it was was a >bunch of old women in wheelchairs sitting around listening to a Dr. >tell THEM about CMT! (this was about 20 years ago and I never >returned) So, just wondering if CMT support groups have evolved? ******* when we have a special speaker we do sit around and listen to him tell us about CMT also, but we always ask for time at the end for questions and answers.******* Jeanie > > Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 >Would someone enlighten me on what actually goes on now in a CMT type >support group? Are these groups for adults or children or both? ****** ours is mainly adults, but children are welcome also ******* >Are people all ages,stages of CMT, or are these grouped'individually? ****** ours is not grouped, we have had as young as 12 and as old as 73, some are slightly affected (some loss of movement in feet), other's more severe (hands that are withered and total drop foot), some walk in without help, others use canes, arm crutches, and wheel chairs. Most of us don't know what type of CMT we have. ********** > Is there an equal mix of women and men? ************ we usually have more women by 2 or 3*********** >Do they include non-CMT family/spouses/significant others/friends? *********** ours include family members and others are welcome. Anyone that has anything to do with CMT, or that wants to learn about CMT is welcome in our group. 2 months ago we had 2 student nurses sit in on one of our meetings.... ******** >Are their speakers? ******* yes, we have special speakers when we can. Usually up to 4 a year.******* >How often do groups meet? *******We meet every 3rd Saturday of each month (Excepting for December). ******** >Do you follow a 'program' like 12 step support groups? ******* No, we don't have a program. If there's any business to take care of it gets handled first, then if there are new individuals they are offered the floor for any questions or concerns they might have. If no one is new then the group shares thier latest knowledge. It's never been boring yet. ******** > Is there a cost? ****** we have a $5.00 yearly dues that helps pay for mailing's of Newsletters, plus anytime we have a special speaker we leave a basket out for donations to be given to the speaker. ******* >Who are the 'leaders or moderators' - do they have CMT? ****** Darlene (Blzerbabe@...) is the moderator of our group at this time. Her husband has CMT. In the past all the leaders were individuals with CMT and each of us (including me) found it to be more than we could handle alone. ****** >I went to one CMT 'support group' years ago and all it was was a >bunch of old women in wheelchairs sitting around listening to a Dr. >tell THEM about CMT! (this was about 20 years ago and I never >returned) So, just wondering if CMT support groups have evolved? ******* when we have a special speaker we do sit around and listen to him tell us about CMT also, but we always ask for time at the end for questions and answers.******* Jeanie > > Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 >Would someone enlighten me on what actually goes on now in a CMT type >support group? Are these groups for adults or children or both? ****** ours is mainly adults, but children are welcome also ******* >Are people all ages,stages of CMT, or are these grouped'individually? ****** ours is not grouped, we have had as young as 12 and as old as 73, some are slightly affected (some loss of movement in feet), other's more severe (hands that are withered and total drop foot), some walk in without help, others use canes, arm crutches, and wheel chairs. Most of us don't know what type of CMT we have. ********** > Is there an equal mix of women and men? ************ we usually have more women by 2 or 3*********** >Do they include non-CMT family/spouses/significant others/friends? *********** ours include family members and others are welcome. Anyone that has anything to do with CMT, or that wants to learn about CMT is welcome in our group. 2 months ago we had 2 student nurses sit in on one of our meetings.... ******** >Are their speakers? ******* yes, we have special speakers when we can. Usually up to 4 a year.******* >How often do groups meet? *******We meet every 3rd Saturday of each month (Excepting for December). ******** >Do you follow a 'program' like 12 step support groups? ******* No, we don't have a program. If there's any business to take care of it gets handled first, then if there are new individuals they are offered the floor for any questions or concerns they might have. If no one is new then the group shares thier latest knowledge. It's never been boring yet. ******** > Is there a cost? ****** we have a $5.00 yearly dues that helps pay for mailing's of Newsletters, plus anytime we have a special speaker we leave a basket out for donations to be given to the speaker. ******* >Who are the 'leaders or moderators' - do they have CMT? ****** Darlene (Blzerbabe@...) is the moderator of our group at this time. Her husband has CMT. In the past all the leaders were individuals with CMT and each of us (including me) found it to be more than we could handle alone. ****** >I went to one CMT 'support group' years ago and all it was was a >bunch of old women in wheelchairs sitting around listening to a Dr. >tell THEM about CMT! (this was about 20 years ago and I never >returned) So, just wondering if CMT support groups have evolved? ******* when we have a special speaker we do sit around and listen to him tell us about CMT also, but we always ask for time at the end for questions and answers.******* Jeanie > > Gretchen Quote Link to comment Share on other sites More sharing options...
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