there weren't any online groups (that I could find) back when this whole MSss started for me.

and yes, seeing people in W/Cs frightened the HECK outta me.

my support group (in rural California) met only once monthly, and the people were all at such varying stages and forms that sometimes it was HARD to see what we had in common.

then, our group leader went through a divorce, a nasty relapse, and then moved away, and there was nobody willing take it over... so I did it for a couple of years.

my main function was supplying a listening ear, and making information pamphlets available, and lugging around our library of books for folks to check out.

I arranged monthly speakers, or sessions on particular issues or symptoms, and it was educational and friendly.

I turned the group over to someone else when I relapsed, and wasn't able to give it my full interest and attention and energy.

but if I had EVER gotten to the point of that guy, Beauty?

where I was *talking* and not listening, or so cog-foggy that I couldn't remember someone's NAME, well then, I would've stopped doing it for SURE.

oh, and Beauty?

FIGHT it, with all your MIGHT, never give in to the MS, never back off, just make little necessary adjustments along the way, and you'll do fine.

in solidarity, Kay.

PS: you are doing well, kiddo, keep it up!

I went to one. It wasn't for me. Everyone was super nice, but pretty uninformed. It was a minimal symptoms group and I don't think most people there had learned very much about MS. I never went back. I like the online version much better, but for some, the IRL provides more of a sense of community.

That being said, my mom loved her IRL group. It served a real purpose for her and gave her some nice friends that she could share with. She's not particularly computer savvy so that format worked best for her.

Hi,

I would like to add something concerning support group meetings. I know a gal who has MS and it is at the present not that bad. Her doctor advised her not to go to a support group meeting as it would bring her down.

I know from personal experience after having gone to support group meetings for CMT that they can bring you down. By that I mean after having gone over quite a number of years (not to every one of them due to the distance) that it can bring you down. After that period of years, I can see how the people I know have progressed and how much worse off they are now. And I have to add myself to that list as well.

But, having said that, I have made some good friends by going. Now due to the distance, as I mentioned, I only pretty much go if they have a really good speaker like a neurologist who is an expert on CMT. That way I usually learn a bit more as to what research is being done, etc. And, I get it from the "horse's mouth".

In the end, it is up to the individual and I would never discourage anyone from going. It is a big help to many I'm sure. Thanks for listening

Thank you so much!! Really!!!

Thanks everyone for sharing your insight and experiences.

I am going to go to this one on Thursday. I will see how it goes, and take the good, some bad, and leave the rest behind. Maybe there will be someone there that I can click with. There is also another new person going (as told to me by the leader), so I am sure they are just as scared...

I also thought this would be good for DH as he has not been taking in as much info as I have.

We shall see. I do LOVE it here, and if the IRL doesn't work out (and even if it does) I shall reamin here as well Boy are y'all in trouble =)

Thanks again!

I think it's going your going to the meeting. You've got nothing to lose and everything to gain.

I've tried different groups here, and found a great one in Colo. Now I'm back here and I've yet to make it too a meeting, but maybe next month.

You have an excellent attitude and will be fine. If all else fails, start your own group. Wait, you don't have time for that. Just hang with us.

Be sure and share you experience with us.