About a year ago a local woman with MS started a badly needed support group for this area. There were several attempts at getting groups started in this area, but the leaders never hung around long enough to make it work. They would do two or three groups and then quit. This got folks discouraged, and many simply stopped coming. Several times you would show up, only to find a cancelled sign on the door and no further instructions till the new leader took over.

A new woman took control of the group about a year ago, and well...she is ...pushy. I cant blame her one tiny bit, but it bugs me. I say I cant blame her because the locals here need encouragement to get anything done. There are more than 100 names on the list, and yet frequently she is sitting with one or two folks. She takes alot of time out of her own busy schedule to find speakers, and arrange meeting places, and be supportive only to find herself abandoned on meeting day.

the few meetings that I have gone to were dominated by the newly diagnosed. Which rightly so, they have many questions, and many fears, but we never seemed to get off the "how do I do this" topic. or the "how to be a new patient" at least 50% of this crowd is no longer new, and many of them are PPMS or SPMS and dont wish to hear over, and over and over about DMDs. for example, one month was a copaxone speaker, and the next was a betaseron speaker, and the next was a LDN woman, and then it was a cancelled speaker to talk about DMD side effects. If you have a computer, or a town library you can easily look up the basics yourself. I think support group meetings should be about support!

so, recently this woman has found herself ALONE on meeting day, and is now starting to get aggressive with her campaign to get folks in the door. I feel bullied into going, and yet I feel badly for leaving her sitting there alone. yep, I have MS and Yep, I feel like I can contribute to a meeting, but its hard to get there, and its hard to stay there. I dont want to hear about being newly dx for the 20th time.

I have spoken to her after her last email blast about "how could all of you leave me sitting here alone!" she wanted input and suggestions on how to pick a better day/time for the meeting, but didnt seem receptive to to what info to have at the meeting. She said she works very hard to get speakers of ANY kind, and its too hard to be picky. I suggested maybe NOT having a speaker, but allowing those who attend to share their stories, and be supportive of each other, instead of having to sit for a 45 minute speach about stuff we dont want to know. It upset her, and she called me ungrateful and told me that if I thought I could do a better job, to bring it on! it really did make me sound ungrateful.

I could use some advice here. If I stop going, the group will die. If I keep going I feel like I am wasting my time, efforts and energy hearing over and over and over about stuff I dont need or want to know. Should I keep going so the group stays afloat? Should I take care of me and just stay home?

Why would the group die if you stop going? Are you the only other member besides the pushy lady? That's alot of pressure on you alone....and nobody should have to bear the entire burden of keeping this group together.

Maybe after she's had some time to calm down and think about it she'll change her viewpoint and not think that you're being ungrateful....just realistic. If not, I'd just tell her that having MS is enough....you don't need more stress and pressure. If she won't take constructive criticism and other ideas for the meetings then she's going to find herself alone. Not too many people will keep going back if all their ideas to help are poo-pooed.

This sounds like just about any support group. It sure sounds like my CMT support group. After years and years of going, I have pretty much quit. There is nothing new and some very boring speakers. And some of those speakers do not even pertain to CMT. I can find anything new out on my other reputable sites. There is no cure/treatment for any type of CMT at the present time so nothing much new there. Yes, research is going on.

Don't get me wrong. Group leaders work hard to find speakers, set times and a place to meet, get material out there, etc. There needs to be someone to help them out as they burn out. Some faster than others.

And I personally do not care to drive over 300 miles round trip to just sit and talk. Sorry but I do not. If I'm going to make that trip it really needs to be worthwhile with some expert neurologist who knows CMT and what is going on. Then weather enters into the picture as well. And we can have it big time where I am.

I also do not care to see how people have progressed; myself included. And you see this as the years go by. That alone can make a person feel stressed and anxious. I don't need to see it. I saw enough of that in my mother, her brother and her father.

So for myself, I have chosen not go much anymore. Stress like that is not good for my health. You will have to decide what is best for yourself. I know a doctor in my area advised a gal with MS not to go to an MS support group meeting as it would just bring her down.

I wish you well in whatever you decide . I hope I didn't overstep here but I believe this pertains to a lot of support groups. And yes, some groups are just all fine. But there are others that are not.

I went to my local a few times. Half of them get tears as they go around circle. I open my mouth to add to what they said and usually I have them all clapping, smiling like a AA meeting lol (no I never been to aa just what I see on tv) so Dej, you're call. If you can be the uplifter and get that good feeling inside from helping others (and not want to go home and hang yourself), do it!

I am one of 3 who go on a regular basis. There are 5 others that come rarely, or occasionally, and a few dozen come once in a blue moon, and only if it is a brilliant speaker. They want high quality snacks, and while one is too warm, the other is too cold, and one is crowded, while the other complains that no one is here. Yes, I fear that as one of the 3 if I stop, its just one other and the pushy lady.

I think support groups can be so valueable, but I too dont want to hear that folks are amazed I am not in a wheel chair "yet" or to see that John has gone from walking and bouncing to a rollator and then into a chair. its hard to watch them fall.

I do want good speakers, but I dont want to hear the same thing over and over and over. I dont want someone to "sell" me on their drug, alternative or idea. I love that they will tell me what they have to say and let ME choose what I want for ME. The BVT or bee venom person had some really awesome info but didnt seem to appreciate that I am allergic to bees. The monavie sales man was very nice, and had good info, but gave off the attitude that we were sealing our death warrent if we didnt use his product. I dunno. am I being picky?

I know I cant continue to go simply because I fear the group will fold if I dont. The pushy lady gets so upset if the core 5 dont show. I cant blame her, and completly understand how frustrated she must be to give up so much of her own time to just have folks tune out.

Its a no win situation. This isnt going to end well.

Holidays can be stressful for some(the group) but Dej, you'll handle it. Bet ya 1$.

Hey how about you get the whole group on Marinol and have a laugh fest? I mention it often! It works

Gosh Dej, I feel really guilty now. Today is our meeting and I decided I just couldn't be bothered going. My bad! Our meets are monthly and I used to go every month if I was well, but lately I have become apathetic about it.

When we lived in a different state, my hubby were really involved and worked hard to help the group make money which was given back to the MSers in our area (providing equipment, medications, repairs, etc), but since moving I just can't raise the same enthusiasm.

I put it down to several things, like the different personalities. The group is small (about 8-15 people) and there's always one who moans and complains, nothing ever pleases her. There's one who knows everything and talks over the rest of us, and there's one who's always saying something smutty ... you get the picture?

Also, this group won't do anything for themselves. While our group (in the other state) was smaller than this one, it was very active helping each other by raising money, this group refuses. They want the Govt. and the public to donate everything as they believe it's owed to them because they have an incurable disease.

I guess that's why I have become disallusioned, and it is a shame to have good speakers arrive and have few people to listen to them but it's always a select few who decide who's to be invited to speak, and who isn't. Does that happen with your group? Does everyone get an equal say?

If none of my reasons apply, then can I suggest a social meeting? No guest speakers, no stress.

Rather than the room/hall or whatever place you have the usual meetings, may I suggest that you have a meet in a park with a barbeque, at some-one's home and everyone bring a plate, or anything else along those lines? Send out invitations to all on the list and ask for an RSVP.

Then, have coffee and something to eat and before people leave, have the meeting. Ask for suggestions on how to get people interested again? You could even ask those invited to suggest one thing each if they can, without puting them under any pressure if they decline to do so. Maybe this simple change (and it might or might not be, a one off thing) would be less threatening, especially if there's a good reason why the number's have dropped off.

That's all at the moment, but I'll add anything else I think of later.

I live over 60 miles from a town that has a support group. I have always wished I could go....but now I'm thinking maybe I'm not missing out! It seems like a hard thing and I surely don't know the answer. It seems like there are as many different support needs for each person are there are different symptoms.

I do admire you for trying your best to help keep it going...but please don't let it cause you more stress than it is worth for you. You certainly don't need extra stress. I know it took me years of exhaustion (before I even knew I had MS) to finally learn it was okay to use that nastly two letter word..."NO". You can only do so much and you can only worry so much!

Here is a big for you. I can feel your frustration! Hang in there...or don't!!! (The meetings I mean!)

Let us know how it goes.

OMG you hit the nail on the head! not only the earlier part about one whining and one that knows it all, and one who is smutty, but the fact that the folks in my group feel and act so powerless.

We spoke about getting a yoga person to come and teach yoga, but the crowd complained that if they continue to do yoga the classes cost money that isnt covered by medicaid. They want PT or OT or massages that are covered. When I mentioned fund raising you would have thought I brought up mass murder. I spoke about maybe calling some local legislators to give opinions (dont care which way) on some hot topics in our corner of the state (medical MJ) or (clean air action days making riding the local buses free) and not one wanted to even pick up the phone.

What happened to trying to help yourself? Since when is being accepted into state services an excuse to give up, sit home and eat ring dings? They dont want to hear about nutrition because they believe the foods being spoken about are not covered by food stamps. Of course food is covered! They dont want anyone taking away their diet soda or mc rib diet, cause we all know that losing weight is too hard if you are sick.

When I mentioned that losing weight and feeling better with small amounts of exercise would help many be able to cut back on their insulin I was blasted with the "dont you realize we are sick!" comments.

I guess after some reflection on why this group bothers me so much, I have seen several issues that have hit the nail squarely on the head. Its hard to help people who dont want to help themselves. I gave up on my family for many of the exact same issues, and yet here I find myself once a month sitting in the middle of a group with the same attitudes and ideas that I refused to accept from family. *sigh*

Maybe I just dont feel kinship to 99% of the folks that when they do come, only come for the handouts. They are furious if they dont have a fatty snack and a bucket of coffee at the meeting. I too have MS, but I want to get up! I want to fight! i want to work out what I can work out. I want to know about things that can make this better, even if it means some work on my part. MS is incurable, but that doesnt mean you sit down in your chair and sink with the ship, does it?

Maybe its me.

I admit...I'm not a big fan of "in person" support groups. I'm not anti-social.......but it's a big energy zapper to actually go to one of these meetings only to find that the ones there are only there to complain about everything that isn't just to their liking. The location is bad.....the food isn't good enough.....the speaker doesn't talk loud enough.....or talks to loud......the parking is bad......etc. At some point, MS or not, people just have to realize that everything is not about them! I hope that doesn't sound callous or cold but c'mon people.......if you look hard enough you can find something good! That's the main reason I stopped going......even if I did only give it a few tries. It's just too exhausting to be around such negativity. If I'm going to expend the energy to go out I at least want to have fun.

Maybe if MS wasn't the main focal point......just meet to be social and get together with friends who understand if you don't want to hit the dance floor or if you spend 20 minutes in the ladies room just to wee wee!