Has anyone gone to a local support group meeting? I went to one the other night for the first time and it was not what I expected. The head of the group did nothing but talk about herself and her problems and kept trying to get all of us to go on a ms diet that is working for her and she even handed us papers of her logs of how she felt before the diet and how she felt now on scales of 1 to 5. Then she handed us papers of what she cannot eat and what she can now eat. She kept trying to push the ccokbook up for us to see so we can get it. There were three of us that were new to that group and she never had us talk about ourselves our symptoms what led to our dx, nothing about anybody but herself. Does anyone know if this is a normal meeting or should I try a different meeting?
WOW hotflash....thats AWFUL and I can tell you that Ive been to several different chapters of MS support groups here in NJ and have NEVER experienced anything like that at all !!!!
When I used to go to the groups, I would experience a group of people who were really interested in making me feel welcome....we would discuss one particular topic to start...for instance, every other month they would have a speaker...one of the speakers was talking about Epidemeology and who is more susceptible to getting MS and why....so, we'd open the next month with a talk about that...and get into discussion about what we agreed/disagreed with.. Then, another month, one of our regulars had delivered her baby- she had stopped taking her meds, started immdiately after delivering, and 3 weeks later was having an awful relapse...for awhile, we discussed both the Estriol trials going on, and the risks of getting pregnant with MS... but in EVERY MEETING we would open the floor to discuss whatever was on anyone's mind..>I can remember myself talking about disclosure, with bosses- and new applications, whether or not to list that I had MS when applying for a new job..I can remember others talking about bathroom issues- sex issues- anything that happens in real life to us MSers.....but what I can tell you is that each and every meeting I went to, I walked out of there feeling less alone, and more informed!
I stopped going to meetings when I got a promotion at work, and couldnt find the time to get to them, but at that point, I felt pretty secure in my MS world- and put all my support emphasis on this group, here....I still think this is my favorite place to connect...but never the less, it was important to me in the beginning that I met other people with MS and found out how they led their daily lives...
Contact the place who told you about this group and tell them what happened..and start looking for a "newly diagnosed" group...they seem to be the most helpful as far as dealing with people who havent progressed to the point that they have dealt with MS for 10+ years...you want a group you can identify with - one with members just like you, in your same age bracket, with your same concerns..
And, im really sorry you had a bad expereince...it shoulndt have been like that.
Thanks you all! I can tell you that there were three of us who were new to the group and there were no introductions, but we were given name tags. Not one person got to speak just going on and on about how she had no time for anything even with a gardener a housekeeper and a handyman. The ms society gave me two numbers of meetings in my area. I thought maybe I would go one more time to see if it's different next time, then I would try the other group in Sept as they don't meet in the summertime.
Nikki, you said contact the ms society about her, is that for a complaint or just let them know that she excludes other people? I honestly felt as if we were HER support group instead of us as a whole. I hope I'm not blowing things out of proprtion but I only wanted to go so I could talk to other people and maybe do other things as a group. If I don't feel as though I'm getting any support then we know why all of us feel as though we are family. It sure would be nice if we all could meet face to face at a resort sometime for a ms family reunion. So until that happens we will all just have to be happy writing our letters to each other.
I never went to one either. I got an invitation to one but didn't go when I saw the itinerary. There was going to be a speaker from our city bus system. I completely understand why being aware of the bus system would be beneficial for MS patients, but I can still drive, and I worried that it would be more like a sales presentation. I really hope that next month's will be something I'm more interested in.
Avonex started 11/07,
Stopped 4/10 due to no insurance.
I think it depends if you're in a good place or a bad place. Personally, things are good with me, and I have no interest in seeing some worse case scenarios that might never happen to me. Call me selfish but I find this sort of forum much more supportive than sitting round a table with everyone eyeing everyone else up thinking "he/she's so lucky/unfortunate". I try to keep a very positive outlook and, at this moment, don't need anyone else to help me feel better.
I never found that to be the case....when I get lists of support groups, they break them down into Newly Diagnosed, where the people are all having had MS less than 2 years or so into other catagories such as Mobility Challenged or Wheelchair Bound...maybe I am lucky, living between 2 major cities (NY and Phila) but I find that going to support groups where you can talk to people with the same fears, same circumstances and same issues really helps.
It also helps on occasion to meet people you can actually call up or meet for coffee to discuss things which happen, when the online board just isnt possible (like when we are at work for example). The other thing I found helpful was since we are all in the same geographic area, we could share opinions on MS docs, Neuros, Homeopaths and PT centers....
I found the most perfect support group for me. Thanks!! They are a younger crowd and the guy who runs it talked to me for over an hour. He and his wife both have ms. They actually have get togethers more than pity groups like the one I first went to. I am so looking forward to thurs night. And you were right keep looking.
I went to the best support group ever last night. I t was like going to your company christmas party. They were very friendly. There were hot appetizers and fruit. When we went around the tables and introduced ourselves and what meds we were on everyone who said they were a caregiver got an applaude. The guest speaker was a neuro who was telling us how far they have come within the last 36 years he has been practicing. He told us how ct scans were new and america didn't have them yet and since there were no mri machines yet the way they checked for ms was to stick you in hot water and if you had a reaction you had ms. The whole experience wasGREAT. Any of you who are afraid should not give up.
Hotflash, Im glad you had the same positive experience that I had, when I went.. in the beginning, i found it really helpful to be around others who were in the same boat as me...>Ive even managed to keep in contact with some of the people who I met...eventually, with my job promotion, It got to be too much and I found that I really didnt need to go monthly, but its really nice to know that If I felt the need- Id be welcomed back with open arms...I told you, if you find the right group, it can be a really positive experience. Im glad it went well for you.
I'm now in touch (through email at this time) with the Multiple Sclerosis group in my city. They're going to help me find a place to live (selling my house at the moment). I'm very particular with living accommodations (single female, I work weird hours, so I need mature folks around me, quiet building, and without a car, a location where I can walk places and has laundry facilities). I'll likely join one of their group meetings one of these days. Without the car, travel is challenging. Buses in this city are terrible (some will only run by an area 3 times daily).