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#11 | |||
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In Remembrance
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When I was dxed the 2nd time in 1993, I met a friend who headed a support group. I loved it, no one biotched, everyone was up beat and so helpful to newbys. We had parties and stuff too.
I stopped going when the local NMSS office moved to Cincinnati and the dynamics and support from NMSS dropped off. ![]() My friend stopped heading it and then she too, stopped attending. I blame NMSS for that failure..the turds.. ![]() Anyway, just like coming here, it's hard sometimes to talk about our MS and that's why we have the Stumble Inn, so we can just have fun. ![]() ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#12 | |||
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Elder
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IMHO, support groups are whine festivals...unless they have a specific issue at each meeting, someone ends up taking over and talking ad nauseum about the first twitch they had, and tells every symptom up until that moment.
I've tried one for incest survivors, and one for fibro patients, and both were serving whine but no cheese ![]() You have to do what is best for YOU, Dej...sometimes you have to just let go...no matter who is hurt/insulted, etc...
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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#13 | |||
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Grand Magnate
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A study (for what that's worth to anyone) found support groups can bring people down rather than being helpful. I think I would not like them and have never gone to one.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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#14 | |||
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Wisest Elder Ever
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I found this to be true with the bereavement group I joined after my DH passed away. I left feeling worse than I did when I got there. After a while it was apparent that this type of "support" was not helping me. I think the same holds true for any type of support group. If you aren't getting any benefit from it then it's time to move on.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#15 | ||
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Grand Magnate
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of any kind can bring you down after awhile. Especially true I found as you see people progressing (as they do with CMT for example) including myself.
And also after awhile, there is nothing new to be learned. I can find anything new on my other sites, if and when there is something new. You just have to do what you feel is right. I don't go anymore due to the distance, weather, the bringing me down stuff, etc. ![]()
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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#16 | |||
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Wisest Elder Ever
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The MS support group I attended for a few meetings was really nothing more than a whine-fest for a select few. Anytime anyone tried to steer the conversation towards anything remotely positive it was quickly turned back around. I think alot of people (including me) got tired and quit going.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#17 | ||
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Member
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![]() I judge everything by this statement, "I'm under strict doctor's orders to only do Happy. ![]() Plus, if I am going to spend any energy going out - you better believe it is to enjoy life - art, yoga, theatre etc. Just my little 2 cents.
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DX: Graves Disease DID=Dissociative Identity Disorder Kidney Disease Liver Disease MG Occular MS - Bladder/Bowels/cognitive/muscular/fatigue Partial Complex Seizures of Frontal/occipital focal radiating into an encephalic whole brain high intensity centralizing in autonomic system area. Brain atropy/brain tumor/brain skull thickening Transient Periodic Paralysis . . . . |
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#18 | |||
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In Remembrance
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I went to an online bereavement support group, after DH died and at first, it was nice, but you're right Kell, after awhile it was depressing.
![]() I guess that's why some come and go here, but I come here mostly because you are my only friends now and I enjoy your company. ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#19 | |||
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Senior Member
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Quote:
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~ Friend2U . . HANG IN THERE! If I had to sum up FRIENDSHIP in one word, it would be COMFORT. ~Adabella Radici MS/dx2006 BETASERON (Quit May 2011) COPAXONE (Began June 2011) |
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#20 | |||
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Member
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I am lucky enough to have a fantastic support group in my little town. When first diagnosed (2001) I went, and to my horror there were three older women in wheelchairs (one terribly disabled), two younger men with walkers, and a couple of people with walking sticks.
It was like a snapshot into a very scary future. Unti we started talking. It was then I realised that this was an upbeat, fun and intelligent and diverse group of great people - defined not by their disability, but by their genuine desire to support and nurture others along the path that they have taken. We alternate between social and formal meetings - and sometimes we just get together for a catch-up. People have come and gone, but the essence is still there. I have been around other groups that do nothing more than complain about there symptoms and how little support they get, and it does get you down. You can't be responsible for other people like that - it is their choice how they 'live their disease'. Lyn |
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