MS support group

[rjoneslaw]

Has anyone gone or joined a MS support group? What did you think of it? Was it helpful?

[WAshingtongirl]

rjoneslaw , I attended a support group after I was diagnosed. Only a few people were there and no one seemed to be 'the leader.' A very unhappy woman took control of the meeting and I left feeling depressed and frightened for my future. I never returned.

But that was a single episode and certainly not representative of most support groups.

Are you asking because you're thinking of going? Do so! You won't know until you try it. You may make friends with people who live near you. You can encourage one another and share information on local services, etc. I hope it is a great support group and fits you and your needs.

[StacyHayward]

I was in one in Wyoming until I moved. I enjoyed it for the company.

[agate]

@rjoneslaw, by all means give it a try. I went to one in WA state many years ago. It met in members' homes and the members were a few women who already knew each other well. I didn't go back.

Years later in the same town there was a building where another MS support group met regularly. They usually had a guest speaker, often a local neurologist. I went to a couple of those. One was so well attended that the room was pretty crowded.

I didn't go to many of them because I use the paratransit van to go places, and the waits for rides can be very long. The meetings lasted 2 hours, and I might be out and around for 6 hours if the transportation didn't work out well. It was tiring.

When I moved to OR I went to one support group meeting, 7 years ago. There were 3 of us there but the leader never showed up. Shortly after that the group fell apart and the leader resigned.

A business and professional women's MS support group also meets every month or twice a month in this town. I expressed an interest in joining but they meet at local restaurants that cost a bit, and restaurants just aren't in my budget. Again, transportation would be a problem. And I don't hear well in a restaurant, have problems seeing, might need to get to the restroom but it's remotely located, and I tend to drop and spill things. So that situation isn't ideal for me, and I've never been to their meetings.

[erash]

rjoneslaw im sure each group is different but the 2 I've been to, while very nice friendly people, just weren't for me.

Not sure I can put my finger on it, I just know that I've chosen not to go back...at least for now.

[ddeadred]

I co-facilitated a support group in cow country which was very social. It was needed in a county that was really large and required travel to get MS specific treatment. We were ale to fill in some gaps for folks in the entire craziness of this disease. Both of we facilitators had MS in different stages. It was comforting to know that we were not alone...

[4fishylady]

rjoneslaw Having this label, (as someone else put it) MonSter, for only 2 years, and living in rural NC, I have not yet learned of a nearby social group. I may attend if I learn of one. On the other hand, at 73, dizzy headed, and fatigued at night, I probably would not make it. Did recently attend a dinner given by Biogen at a nice restaurant 10 miles away, which I insisted my husband take me. He needed to hear from others, including a Neuro, what this thing is. The drug companies put these on all over the place, in restaurants we could never afford, and they are free to all attendees!!!! Have at it! Get online with all the MS websites and MS drug maker sites that you can, and take advantage of their good food, question and answer sessions, and personal stories. We need all the help we can get, to get through this battle of our lives!

So far, sitting in my isolated little patch in the woods, this forum is the best I can do. I am also currently beginning a trek into the dark recesses of my mind and personal history with anxiety. I thought it was just something that has happened along the way, but in going back through my own family history, I came by it naturally. When I get it all down in print, I may share with those who would care to read about a wild ride on one of life's roller coasters. Meanwhile, let me suggest you research "Celebrate Recovery" which is a Christian based self help program, that I am just entering. There are locations all across the USA, where this program is working to help people, with hurts, hang-up's and habits, that they need a secure place to unload and get help with. I have just learned through this program, that I am "codependent". I did not know what that meant until a few days ago, with CR's 20 bullet point statements. I need help. I am willing to receive help. With God's help, I will survive all this! I know who I am in my Christianity, but I don't know who I am in my marriage. Leave no stone unturned to find your best forum, or forums. Grab it wherever you can. Life is short. Pray hard! Let's all learn to fly with the eagles!!!!!!

[WAshingtongirl in reply to 4fishylady]

Ah 4fishylady , your post tugged at my heartstrings. I wish you didn't live such an isolated life, that we could sit and chat over a cup of coffee, or that you were able to get out more often. But I am happy to hear that your faith is strong and will help you through the dark times. Celebrate Recovery is an excellent group. A number of the churches we have attended have had various groups, with many in attendance. I understand it has helped many people overcome many things. I love your reference to Isaiah 40:31.

If you ever need to chat, or a listening ear, I'm only a private message away. 💕

[4fishylady in reply to WAshingtongirl]

Tutu thank you so much for your kind words. I will remember you and get back for that chat.

[greaterexp]

It's wonderful to link up with people with similar interests or abilities (or disabilities). Though I think there is a small local MS support group, I have found what I was looking for right here. For many, however, having someone whom we can see in person is very important. I do appreciate the very therapeutic hugs I receive at church each week! If that group isn't all you'd like at first, you may be able to add greatly to it.

I wish you well!

[Hidden]

I go to a local support group that has been going a very long time and is run by a retired nurse. I find this group has several benefits for me, but I suspect it depends on the group. I look forward to the monthly meetings which often include some education about MS and how to deal with it.

[bxrmom]

Thanks to everyone who has replied, it really helps. I really am thinking about going to one of their meetings to see what it is all about. I'm sorry I didn't back to you all individually, but I do appreciate your comment.

Jessie

[CalfeeChick CommunityAmbassador]

There are none that are within 100 miles of me. I'm not driving right now until I feel stronger and get a car with automatic transmission. I did have the pleasure of meeting Tutu last week. I was so wonderful to meet her in person and chat about all the joys of MS.

[Iggyvair]

I am in a support group. Because of the MS my world is shrinking. The MS support group gives me an excuse to get out and meet new people. Erie Pennsylvania

[rjoneslaw]

Thank you all that responded to my post. It is great to hear from others and what they have done.

I plan to attend one next month in Oaklawn IL

[imascatterbrain]

YES, I went to the same group for years and it was wonderful. Not only did I have a chance to discuss EVERYTHING MS-y, but I also made friends!