Do IRL support groups really help?
 

I lead a support group for Weight loss surgery. It is positive and upbeat.

I have my first MS support group meeting on Thursday. I called the leader of the group. While the is nothing against him at all, he scared the crap out of me.

During our 20 min conversation, he asked my my name at least 6 times, even after JUST telling him it in the sentence before. He asked the age of my daughter 3 times. He said he was DX'd at 35 and went on disability almost immediately because of his progression. He has RRMS. He says he won't use a cane or walker but there have been times he has had to crawl to the bathroom. Said his wife left him 2 years after his dx. Asked if I could put one foot in front of the other, I said, Yes. He was stunned :confused: Asked if I could write well, I said yes, he was stunned :confused: Asked if I worked, I said, yes, 2 jobs as well as going to school, writing a book, being a full time mom and wife. He said, well you might need to give some of that up :eek:

I understand this disease takes a different course for everyone. I understand some are worse than others. Right now, in the newness of the diagnosis (although I;ve known of the possibility for 8 years), I find myself absorbing EVERYTHING that I can learn. That is a good thing, but when I talk to people or watch my friend with ms struggle to get in and out of her wc, it scares the bejebees out of me.

The guy I talked to was in his mid-forties. I don't wanna be on disability by that time. I don't wanna hear I can be. I wanna hear that I should fight this, and I am doing well, and people not be surprised that I still have abilities that I do.

I guess I have (so far) a very mild course. I have had 2 relapses in 8 years, and when in remission, other than fatigue and the occasional balance issue, there is nothing wrong.

AGGH. I just wanna talk, but don't want the negative shoved down my throat and me beat into submitting to this disease. Does that make sense. I wanna see others who are still working at 50, and not in a wc. I wanna hear THAT is possible. I want hope!!!

I just feel if I go to a support group, I may leave even more depressed. I already have insecurity issues. Even though my husband and I have been through he!! and back, we have a wonderful marriage, but I wonder if THIS could be the breaking point, when/if it gets bad.

The dynamics of this group is great. We have all different aspects of the disease represented. That makes me feel good. I can take the good and the bad. I can know the wat ifs of the good and the bad. THAT is what I want. A balanced representation.

Just thinking out loud!!! It was just a scarey and weird phone call last night. Got me pretty depressed.

Thanks for reading!

I am an IRL (took me several tries to figure out what that meant LOL) MS SHG leader. (In Real Life Multiple Sclerosis Self-Help Group leader) and I pray I never talk with a person considering going to a MS SHG like that leader did.

I have gone through some extensive training with the NMSS and when I can no longer follow their guidelines I will step down.

But I will never sugar coat MS for anyone. It is what it is. There is hope for everyone and that is what I concentrate on when I talk with a new caller and/or someone who has been in our group. We vary from the very able to the very disabled both in cognitive and physical sense.

If that SHG doesn't seem a good fit for you call the NMSS 1-800-FIGHT-MS and see if there are any other groups in your area. Also, if that leader is affiliated with the NMSS then please share your concerns with your local chapter.

I'm sure you know as a SHG leader yourself you will never be able to meet everyone's needs all the time.

Good luck, let me know if I can help you find a local group for you.

Thanks Sassy! You are right not to sugar coat it. I don't want sugar coated... but I don't want surprise when I tell my abilities as well!! He seems like a very nice person. As I said, it was nothing against him. He saounded like he just needs someone to talk to (VERY MUCH, I think he is alone). I am hoping that they have the whole spectrum represented as well, that way, as here, I can take the good with the bad. Know the potentials of both sides, and lear the way everyone copes, so I can start making my own coping skills, and be preared IF I do start taking a more progressive course.

Funny - Today, tomorrow and Friday, I work 7 am to 11 pm. Thursday was my only day off, and I found out that the group is this Thursday... so I guess there is a reason I am supposed to go!

Thanks =)

I felt the same way as you when I attended my first MS group meeting back in 1991. It was terribly frightening for me. :eek:

I found that most people who attend those meetings, at least in my location, are shut in. Many use this as their only "social" of the week as they were all quite disabled.

There are 4 mothers on my daughter's baseball team with MS, and the only reason I know is because I am the most disabled so they talk to me. I suspect plenty of our neighbors and co-workers have it, and we are none the wiser. Those aren't the one's we will run into in the meetings though usually.

I stopped going, until the MS became a full-time job for me. When I was on more of an even playing field (or at least clearly headed that way), that's when I was able to attend again.

Just don't go. :)

Cherie

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:winky:

Sassy makes some very good points!

I have been to some SHG in my area and am very involved with the NMSS organization here. There are several groups that meet in my area and I occasionally attend a meeting here and there.

I tend to focus on the positive rather than the negative as I have learned that this disease is different for everyone (all 7+ that I have had this disease!) ;) I also have many real life friends with this disease and each and every one of them are different. ;)

When first dx'd, you have to sift through the minutiae and find what fits for you. Trying to absorb everything WILL scare the carp out of you. That's why a lot of docs say to the newly dx'd stay away from the internet and stay away from SHG. Figure out what's best for you, get comfortable with yourself and this disease before you see how it affects others.

I think at some point we have all been where you are so don't feel alone. SHGs do fit for some people, but not all. They do serve a purpose.

Maybe by going, you can help someone else. We are not all in wc, and we will not all end up in wc. Some people may have one relapse and never have one again. Others are not so lucky. It's an unknown disease course for everyone.

So sit back, relax, and enjoy the ride. You never know what the day will bring! ;)

Thank you so much!! Really!!! :hug:

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 :eek: Boy are y'all in trouble =)

Thanks again!