Jump to content
RemedySpot.com

Re: Support Groups for CMT

Rate this topic


Guest guest

Recommended Posts

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

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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

Link to comment
Share on other sites

  • 2 weeks later...
Guest guest

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

>

Link to comment
Share on other sites

Guest guest

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

> >

>

>

>

Link to comment
Share on other sites

Guest guest

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

>

Link to comment
Share on other sites

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.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...