Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 I just do not know of any in my area.I really do need to visit with people with CMT. Geoff in Phoenix > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 Wow I think I could speak a lot on this and everyone may not agree. Our support group has just had three meetings. I missed the last one. The first one was close to my house and I loved that. They lost the room and had to move and now have to drive about an hour and a half. That itself isn't really an issue but obviously closer is better especially during the winter. I felt the meetings could have been better in that we didn't really get to talk to each other and discuss issues as much as I would have liked. We had speakers at both meeting which was good but when the speakers ended the meetings kind of ended funny and we just left. I volunteered to collect referrals on dr's and specialists because we all have them but I got very few. It almost seemed like people didn't want to share or didn't want to bother. I ended up pulling the names from the CMTA website to add to the list. We attend because my son (age 11) has CMT. I did not feel I really got the support I was looking for. People who have CMT and have kids with CMT better understand the kids needs and I cannot understand it as well so was looking for some guidance /suggestions from others who already have experienced what we were going through. I get more daily support from this group as I can post whenever and have a better chance of hearing from someone who can offer support or suggestions. I think the good thing about a support group is the speakers and topics discussed. Also getting to possibly know someone local would be beneficial for my son but that has not happened. I wish our support group has a group similar to this one but they do not. Basically the two meeting I went to left me sad at the prospect of my sons future and less hopeful than I might have liked. I am hopeful that he has time on his side and research on his side for the future. I want to thank everyone on this group for your support and encouragement that I do not get from the local support group. I will only attend a support group meeting in the future if the speaker is someone I am interested in hearing from or about. Lori From: [mailto: ] On Behalf Of gfijig Sent: Tuesday, February 23, 2010 1:47 PM Subject: Support Groups for CMT I'd just like to hear from those of you who are attending CMT Support groups? Do you feel you receive the 'support' you need? Do you share notes on doctors/physical therapists? Has your group made a listing of doctors/PTs/orthotists/other services in your area? Has your group been active in any fundraising projects? Do you like the social aspect of meeting others you have something in common with? Do you leave all the organization to leaders and just take what's offered? Has your support group established any goals? And for those of you who choose not to participate in a Support Group, can you tell my why? Driving distance, already know about CMT, don't want to meet with others and hear problems? Too busy? Prefer online CMT communication? Other pros/cons? Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2010 Report Share Posted February 24, 2010 San Diego just had their second quarterly meeting and it was very well received. One of the members brought along his chiropractor, who gave a demonstration of exercise using a Chinese Wand. He brought extra sticks for us to use and try some of the exercises he'd shown us. http://www.stickstretching.com/ I think room dynamics might have a lot to do with interaction. The San Diego group is small enough that we can sit in a circle, which really facilitates discussion, to the point where the moderator sometimes has trouble regaining control of the group. Just being able to share stories means alot to people. Knowing that someone else understands what you're experiencing, and can maybe offer their perspective on how they've dealt with similar issues, is very worthwhile That's what support groups should be all about. It's no a lecture series. O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2010 Report Share Posted February 24, 2010 Regarding the difficulty of putting together a list of doctors, contacts, etc. I wonder if that's because few of us have someone that is truly knowledgeable in CMT? In my case, I've got a primary care doc that, along with me, has learned a lot about the disease. But is he someone that could be beneficial to the next person with CMT, based on his experiences helping me? And I was diagnosed by the neurologist named in the CMTA list. He was not helpful, and no one I would recommend, so that list can't always be trusted either. O Support Groups for CMT I'd just like to hear from those of you who are attending CMT Support groups? Do you feel you receive the 'support' you need? Do you share notes on doctors/physical therapists? Has your group made a listing of doctors/PTs/orthotists/other services in your area? Has your group been active in any fundraising projects? Do you like the social aspect of meeting others you have something in common with? Do you leave all the organization to leaders and just take what's offered? Has your support group established any goals? And for those of you who choose not to participate in a Support Group, can you tell my why? Driving distance, already know about CMT, don't want to meet with others and hear problems? Too busy? Prefer online CMT communication? Other pros/cons? Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2010 Report Share Posted February 24, 2010 O, I have to agree with you. A smaller group may be better than a larger group. Maybe the larger groups should break up into smaller ones by interest or age etc. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2010 Report Share Posted February 24, 2010 I'd like to go. I've tried several times. I even drove almost all the way to your meeting in Santa Barbara but got caught in bad traffic and realized I'd never make it. I am just so busy with 5 children and a husband, a small zoo and full time job. I guess that is a good problem to have. One of these days I'll find a group that is meeting when I can come. Holli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2010 Report Share Posted March 7, 2010 I don't feel like I get the support I need when I go to a support group. No relationships are built.It's just information and then we all leave.I like to see more realtionships built. > > I'd like to go. I've tried several times. I even drove almost all the way to your meeting in Santa Barbara but got caught in bad traffic and realized I'd never make it. I am just so busy with 5 children and a husband, a small zoo and full time job. I guess that is a good problem to have. One of these days I'll find a group that is meeting when I can come. > > Holli > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 Hello, friends, I guess I understand what means. According to theories, communication has several levels. The lower levelis just sharing information. For example, I went to a seminar, people there talked about how to calculate a math equation, how the government implements a health policy, how the weather is in New York and UK, how to do this, how to know that, what is this where is that. The higher level of communication is sharing feelings, that is, talked about emotions and other stuff. For example, how does this relate to me, what is the relationship between me and that, how I feel about this, what we are doing together and so on..... This way of communication cause more connections. People don't pay a psychological counselor to hear the counselor talks about what is Virginia Satir's psychological theories and models. People need to be heard and understood. The real psychological and emotional supports come from the higher level of communication. Why I must go to the " support " group, if I can search and find all the information on line. You guys are still lucky to have suppport groups. I have no support group in Taiwan. So I join CMT facebook group. These are just my shallow opinions. Hope this might be helpful. Please take care On Mon, Mar 8, 2010 at 7:46 AM, fittness35 <no_reply > wrote: > > > I don't feel like I get the support I need when I go to a support group. No > relationships are built.It's just information and then we all leave.I like > to see more realtionships built. > > > > > > > > > I'd like to go. I've tried several times. I even drove almost all the way > to your meeting in Santa Barbara but got caught in bad traffic and realized > I'd never make it. I am just so busy with 5 children and a husband, a small > zoo and full time job. I guess that is a good problem to have. One of these > days I'll find a group that is meeting when I can come. > > > > Holli > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 Hi , The forming of member relationships was a main topic of discussion in Las Vegas. Having presenters is great, but the bonding and getting to know others at sg meetings is of equal importance. Hopefully you will see changes in the meetings to come. Thanks, Ouellette > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.