Any thoughts about real-life MS support groups?

[agate]

I just did a survey that came by e-mail from one of the MS organizations, and a couple of questions concerned MS support groups. I'd post a link to the survey here so that others could take it but it was one of those e-mails where you take the survey but you can't provide a link to it for anyone else.

I realized when thinking about the question that my experiences with real-life MS support groups hasn't been very good.

I was wondering if anyone else has tried one of the groups that meet in person, and if so, how was it?

I recall Howie tried to start one a while ago but got discouraged because there was only one other person, or maybe there weren't any....

[flatcap]

Good topic, agate.

I never stated my own group, but Howie's experience mirrors mine.

There was (maybe still is) a local support group led by what I would call an MS Hobbyist, but it never amounted to much when I was still in a attendance. I think the most that ever showed up were two or three people at a time, and I do not recall ever seeing another man there. In some ways, I always felt more alone than I had before I went to a meeting. I did not last long as a member of the group, if only because there wasn't one.

I might attend another MS support group (or a Parkinson's support group) in the future, but probably not. I'm not sure there is any point. I am not very capable in groups consisting of more than one other person — at most. That applies across the board, not just in support groups. YMMV

[agate]

My experience has been similar.

1 - I went to a support group that met in a member's home. There were about 4 other women there, and a couple of them had known one another since high school and spent the whole time talking about what they had in common. I didn't go to any more meetings of that group.

2 - The local MS Society chapter began having regular monthly meetings at a more public location, and I went to a couple of them. At one meeting a local neurologist was the guest speaker, and it was well attended--about 25 people. I heard the speaker and left, and had the impression that that is what everyone else did.

3 - Since moving to this state, I went to a local MS Society chapter meeting that had been scheduled. It was at a church. The leader never showed up, and no explanation for his absence was offered. There were 2 other people present--a man and a woman--and we tried to carry on a conversation briefly but it was awkward as one person had too much difficulty communicating and I can't recall much about the other one but it was clear to me that if there is going to be such a group, it should have a leader who is able to lead and work at involving everyone in the group to some extent. Such people are probably hard to find, however.

4 - I'm still a member of a women's MS support group sponsored by the MS Society. It used to meet monthly at area restaurants but I never went to any meetings though I did meet the leader once. She came to visit me some years ago. It was just too much effort (and expense) to show up at a restaurant, and by that time I had become fairly discouraged about MS support groups. The group is still meeting but since COVID the meetings have been by Zoom. I don't think my computer is up to Zoom, or maybe I'm not up to Zoom, and so I haven't tried to attend those either.

[flatcap]

Out of curiosity, I went looking for MS support groups and found this resource:

Multiple Sclerosis (MS) Support Groups

Only registered and activated users can see links., Click Here To Register...


This led me to:

MSWorld Message Boards

Only registered and activated users can see links., Click Here To Register...


Which, in turn, led me to:

CU Professor Leads Study on Discontinuing Therapy for MS Patients Over 55

Only registered and activated users can see links., Click Here To Register...


Which, last but not least, led me here:

Risk of new disease activity in patients with multiple sclerosis who continue or discontinue disease-modifying therapies (DISCOMS): a multicentre, randomised, single-blind, phase 4, non-inferiority trial

Only registered and activated users can see links., Click Here To Register...


I also found that, according to the NMSS, our local MS support group no longer exists.

[Virginia]

I immediately joined a live group when I was diagnosed. I went once a month and I really did enjoy it. I was a member for a number of years and hated the thought of missing a meeting. We met in a church for 1 1/2 hours to 2 hours. Then those of us who could went to lunch together. Sometime there might be 15 people and then there were times there might only be 6. When I joined the group they had been meeting for years. It was started by Minister, however that never came into play in our meetings. If a person didn't know he had a PhD in Divinity, they could never guess. He had a lady who was co-facilitator. I met some really nice people and learned a lot from that group.

After I had been there for years the facilitator got so bad that he had to leave. The co-facilitator moved quite a distance away and could no longer come. Another lady moved up close to Charlotte with her son and two people moved into an independent living place. So finally it kind of fell apart. I hated that happened.

Since then I have read of a number of people in that group who died, all were younger than me. I would not want to join another group because I have progressed to the point that I just don't feel like doing things like that.

[agate]

Virginia, it sounds like your MS group was one that was run the right way. I'm so sorry it didn't last longer.

Yes, it is difficult just getting to and from any place outside the home for many of us. That's why it seems particularly bad when groups are so badly run. The one I mentioned where no leader showed up was a prime example. The other two people who showed up were very disabled as I recall. It was just a shame that they had gone to the trouble of getting themselves to a meeting that didn't even happen though we did try to chat for a while.

When I was first diagnosed, I was living in Chicago and looked into possible support groups. There were a couple of them, but they were far out in the suburbs, much too remote for me to think about getting to.