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Would You Attend A Support Group?

After meeting so many wonderful people over the last couple of weeks of doing this fundraiser, who have just been diagnosed (or at least within the last couple of years), I realized that maybe I should start up a support group in my area for people who are newly diagnosed.

I know I mentioned this the other day, but I think it would be a great thing to have. I have had many people who have MS and their family members mention that they feel very overwhelmed. It is hard enough to wrap your mind around being diagnosed but there is so many questions to go along with it. Where to go for information and/or help? Who are the doctors in the area that specialize? What if my insurance company won't pay for my do I get them? I feel like between my experience with MS as a patient and my experience working in the medical field that I can really help people.

I have found that this online community is a great help. Not everyone feels comfortable talking about their experiences online, heck it can be even more difficult in person. I would hope that we could create an atmosphere that allows us to come together and discuss MS if one would wish, but also to have a place to come and just be okay with being a "member of this club" if you will. MS can be a very lonely diagnosis if you don't have a support system. Most people have a support system within their family and friends, but sometimes it can be difficult for them to relate and so it is also important to have people who can relate because they are going through the same thing. I guess I will just have to see how it goes.....I think it is important that everyone is comfortable!

So, if you are reading this and you live here locally (Richland, Pasco, Kennewick) let me know if you would attend a support group if I were to start one. I think it is important that we each live our own lives and not get so wrapped up in our illness and so maybe meeting once a month would be appropriate. Whether you live here or not, please leave me a comment and let me know about any experiences you have had with support groups (I want to hear both good and bad). If you have any suggestions on how to make this the best experience possible, please let me know. I hope to hear from all of you.....especially if you live here locally.

Take care.


mdmhvonpa said...

The support groups in my area were an organized gathering of codependants and enablers ... it took me 2 visits to realize it would make me less happy than if I forged on alone. Hopefully, you can get a more rational group of people.

Malcolm Friend said...

Jamie, thanks for following up with me at Multiple Sclerosis Association of America this week. I have passed along your contact information to Sue Pencoske, the North West Regional Director of MSAA and she will discuss support groups with you further.

Needless to say, I have recommended you most highly as a support group leader and advocate for MSAA to Sue.

Keep up the GREAT effort!

Malcolm Friend
Director of National Volunteer Services and Special Events
Multiple Sclerosis Association of America, National HQ

Charles-A. Rovira said...

I just went to our (not so) local support group meeting.

I suspect that we'll be the ones doing the supporting. :-)

Oh well. There's nothing like feeling needed.

Gandksmom said...

HI Jaime - I was just diagnosed with MS by my GP and am waiting on my appt with the neuro. This is all new to me and I was sent your way via vivian! I look forward to reading about your journey!

Jaime said...

Mdmhvonpa & Charles,
I sure hope that if I can get a support group up and running that we have better luck than you two.

I actually spoke to a woman today who has a different illness and she wanted to know about support groups for women with chronic illnesses. I guess I will just have to see how things go and if people in this area would prefer to have a support group that included people with other illnesses or just with MS.

Thanks for your feedback. :)

Jaime said...

Thanks Malcom for passing along my information to Sue. Anything I can do to help would be great!

Take care,

Jaime said...

Welcome! I am sorry to hear of your recent diagnosis as I don't wish this illness upon anyone. Just know there is a lot of great information available and a wonderful network of people with MS here online.

If you ever need anything...want to talk...whatever just let me know. You can also reach me through my email (link on the front page).

Take care of yourself,

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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