Support Group?

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Support Group?

Postby msmything » Mon Jun 30, 2008 11:39 am

I want to start by thanking everyone o this site, there is a wealth of information shared, as well as just a good attitude.

I work for the Advocate health System, and am involved in opening an offsite Imediate Med Care place quite close to where I live.
The building has a community room which no one seems to have a use for as yet.

My thought was to start an MS support group for information exchange, much like this web site.

However, I want to discourage whiney people. We're all in agreement this sucks, but it is what it is, what challenges are you facing and how are you facing them is more the tone I want to set.

Any ideas? I've contacted MSAA and the other national one who's name escapes me. (maybe the 1st topic discussed can be cognitive issues)lol
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Postby robbie » Mon Jun 30, 2008 1:47 pm

However, I want to discourage whiney people.

lol, whining is complaining about a cold or a sore throat not having your life stripped away from you.
Had ms for over 19 years now.
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Postby Loobie » Mon Jun 30, 2008 2:21 pm

Ha! That is some profound shit right there Robbie! I agree, "I can't stand this congestion!", is a bit different than "I can't walk today!".
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Postby gwa » Mon Jun 30, 2008 4:08 pm

Many years ago I attended some MS groups thinking that I would learn something about the disease. I was wrong because no one knew any more than I did and it was a waste of my time to go to the meetings, so I stopped.

I have learned more from online groups than from face to face groups and prefer the internet friends that are in similar circumstances. There is no getting dressed, figuring out how to get to the meeting place, and now days, using up high priced gas to go to a place that is not a necessity.

It might be a good thing for you to find the post by robbie that gives a chart for the various stages of MS. Being "whiney" is indeed part of the earlier stages and these people have different outlooks than some of the rest of us.

As robbie said, they have just had their life as presently known jerked from them and they may be somewhat whiny. If your personality does not allow for views from all types, you might be better off just watching from behind the scenes online.

gwa
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Postby msmything » Mon Jun 30, 2008 4:11 pm

Ya know, I'm about 1/4 of the personI was just 3 years ago. I push myself to work 2 days a week so I can have insurance to cover the cost of this disease. I've lost my home, my livelihood, social life, lifestyle. My car has 245,000 miles on it. I can't feel my hands, I'm in constant pain, I can't string 2 coherent thoughts together. I fall, walk into walls, am sometimes afraid to go anywhere alone in case I forget where I am.

Ya know what I feel like crap now just thinking of all that lost hope.

This disease has won in alot of ways, but not completely.

Not until I'm dead.

I prefer not to dwell on the can't, and salvage the I kind of can.

It is a choice I still can make whereas MS has taken most other choices away from me.

THIS is MS
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Postby msmything » Mon Jun 30, 2008 5:21 pm

Wow GWA, I guess all viewpoints are not welcome here, thanks for putting me in my place.

I'll stay behind the scenes and not participate online. What was I thinking trying to be positive in the face of personal difficulties.

If this site is for sharing info regarding eradication of MS why would someone who has given up resent my attempt to not give up.

If you had read my initial post you would see that I was hoping to find a group of folks that could exchange strategies, and treament information like the various threads here.

I have no interest in spending any time with anyone with why me, or why bother attitude. Just as I have no interest in being that person.

Lesson learned.

Colleen[/i]
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Postby robbie » Mon Jun 30, 2008 6:39 pm

Colleen if you do start an ms supoort group please allow all persons with ms regardless of their attitude, the ones with the poorest attitude probably need the most support and you may better understand ms.
Had ms for over 19 years now.
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Postby GeoGuy » Mon Jun 30, 2008 7:42 pm

Starting a support group may be a good thing, but check to see if there is already one in your area. No sense in re-inventing the wheel.

I go to a support group that meets monthly and is sponserd by the local NMSS Chapter. It's called MINDs (Minimally Impared Newly Diagnosed). That is a bit of a misnomer since we have people with SPMS, canes, and wheel chairs in the group. I guess that just shows that attitude is a big part of coping with MS.

I started going right after my diagnoses in 01/07 and it has been very helpful to me. Meeting other people with MS in the group, and here, has been very positive. I've made some good friends there and here, and learned a lot. There's nothing better than finding someone that can relate to you. So I encourage you to start a group. It will help you and others, but as Robbie said, it should be open to everyone, because we all need a friend that can relate, especially those that are down the most (i.e. whiney).

Jack
RRMS since 01/07.
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Postby nenebird » Wed Jul 02, 2008 10:31 pm

I think it therapeutic to be involved in a support group. Yes, there will always be whiners, but what can you do?

I go to a group and we have one who always pipes up about specific issues like no one else has had difficulties. It is a bit tedious but the conversation moves on and luckily this person doesn't try to monopolize the conversation.

But there there are others, way more disabled who sit there grin and bear it. I go to see and interact with those brave ones. The whiners? I kind of ignore them.

If you wind up with a lot of whiners, bring cheese snacks to go with the whine!!
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Postby robbie » Thu Jul 03, 2008 6:23 am

But there there are others, way more disabled who sit there grin and bear it. I go to see and interact with those brave ones. The whiners? I kind of ignore them.

WTF has being brave got to do with it.
Had ms for over 19 years now.
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