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ethansmom

Starting A Local Support Group?

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I was wondering if anyone would be interested in starting a local support group in the Washington DC Metro Area (to include DC, Virginia, Maryland, West Virginia, even Pennsylvania). I have noticed a lot of members of this board live in this area, and I just keep thinking it would be wonderful to have monthly meetings where we could all get together. I have wished for years that I had others to meet personally and talk to that could relate to what I was going through. I'm not sure how to go about doing this, or if anyone is even interested, but I am really trying to be proactive and get things moving along. Let me know if you have any ideas, suggestions, advice, thoughts, etc...

Thanks!!

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I'm up for it! I have a hard time sticking to schedules, and might not be able to make it depending on how I feel on a particular day. This would keep me from being the 'host' for this kind of event any time soon. Some of the Richmond/Charlottesville Virginia folks talked about getting together before, but it kind of fizzled out. I think its a great idea though....

-Dan

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That would be great . . . although I'm sure a few people would have trouble showing up at a certain day & time depending on how they are feeling. I had actually thought that what we could do is maybe have 2 meetings per month, in hopes that some of us could make it to at least one. Any and all thoughts on this would be appreciated, I'd be more than happy to get things moving in a positive direction- I think I am feeling well enough overall to help "host" if needed. Thanks for the response!!

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That is a great idea! I would diffently be up for it! I live In Maine, and wouldn't mind driving up there! I have always wanted to meet others! I would try to make it as much as possable. It's not really all that far away..and I like traveling. :D

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Guest nancy

Hi, y'all I'm Nancy. I remember some of you.

On the topic of a support group. I know there is already a group going on in the VA/D.C. area, at least there was one last year. My mother was the one that saw a write-up in the Washington Post about a meeting of the Dysautonomia Support Group - or something like that, and that is how I first found out what might be wrong with me. I'll see if I still have the newsletter that my Mom got for me. If I remember correctly, they would meet once a month. And I remember in the newsletter I had, the next meeting was to be in Northern Va (which is way too far for me in Baltimore).

I'll see if I can dig up the info, or else, maybe it is on the dysautonomia web site.

Nancy

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Hi Nancy!! Thanks for the info, I wasn't aware that someone had already started a group in this area. I'm sure several of us would love to add to the group if we can find out more info about it!! Baltimore is about 2 hours from the DC area, right? It is a bit far, but maybe you would be able to make it on occasion? Let me know if you have any more info . . . thanks again!!

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Guest nancy

Hi, Jessica!

Actually Baltimore is anywhere from 50 minutes to about 1 1/2 hours from D.C. depending on where, and traffic.

I located the newsletter I was referring to. It was from February 2002 so I don't know if the info still is accurate.

Here's what it says:

No (for Northern) VA MVPS/Dysautonomia Support Group Newsletter

Elly Brosius (703) 968-9819 14404 Brookmere Dr.

EleanorBB@aol.com Centreville, VA 20120-4107

I can't recite the entire newsletter. It's 2 sides of an 8 1/2 x 11 page. But it appears that they used to meet at Reston Hospital but are now meeting in "my house" (I guess Elly's house) unless the numbers (of people) get too large.

Regular Meetings

The Northern Virginia Mitral Valve Prolapse/Dysautonomia Support Group normally meets the 2nd Tues. of every month from 12-2 PM at the Brosius residence (the name given above) Directions are then given. The info is from 2002 so I will not give out too much info in case it's incorrect.

If you want a group email sent to you, email her your address. There's also a "2001 list of most helpful stuff" which contains things such as Vitamin D, sunning, cod liver oil (I use this), fatty acid tests etc. etc. There's books listed, a CFS support group update, resources are listed and an "About Us" section which says:

This group of 300+ is comprised mainly of persons with MVPS/D. We are informal, education based and rely on volunteers and donations. Please volunteer (take calls, send meeting notices,...), please donate. We discuss symptoms, coping, treatments, etc., but we do not dispense medical advice. See a qualified professional for care, if you can find one.

Etc. etc.

I guess we should get on the email list for info, if they're still around.

Nancy

P.S. There's a large write-up at the top that says "Common Symptoms of Mitral Valve Prolapse Prolapse Syndrome (MVPS/D)". This is what my mother saw and told me about when I didn't know what was wrong with me. It says:

MVPS is an imbalance in the autonomic nervous system, a dysautonomia. Common symptoms include abnormally rapid throbbing or fluttering of the heart: a feeling of apprehension, worry, uneasiness or dread that leads to problems in maintaining attention and concentration; chest pain; rapid, irregular and shallow breathing; feeling very tired for no apparent reason; depression; sleep problems; digestive problems; migraines; feeling unsteady; cold hands and feet; difficult standing or sitting still; heat intolerance; alcohol intolerance; feeling too cold or too hot or both; being afraid that you are going crazy.

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Thanks so much for the info! I wrote her an e-mail, so I'll let you know what I find out over the next few days!! I really hope they are still holding the meetings.

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