Your experience with the A.W.A.K.E. Group in your area?

[mindy]

Good for you, Joy! I haven't been to an A.W.A.K.E meeting in my area yet, but had some experience with chronic disease groups some years ago. Where I lived then they had no support group. I felt a real need for one and talked with a nurse who worked in that area at the local hospital. She was interested in helping but not in doing the organizing. I set up a meeting and invited one of the local docs to give a talk and put up posters in doctor's offices and various other places. We got quite a few more people than I expected. Just about everyone expressed an interest in a support group and I took the lead on that. We would periodically brainstorm topics and then sometimes someone would know a speaker with that expertise and other times we checked around. Everyone agreed that we wanted some meetings without a speaker to share war stories and solutions.

I found it took a good deal of my time to keep things going because we all had spells when our disease was active and then didn't have the energy to put it together. It was definitely worth it. When I moved away several years later, I heard that the group kept going - and I was very happy that it did.

I can understand why nobody wants to take on running these things and people with the disease/condition sometimes don't have the energy to do it all. I tried to get as many people involved in planning the meetings as I could which helped - when everyone feels they have a stake in it they are much more likely to stay involved. I've seen other groups fall apart because either patients or professionals just don't have the time/energy to keep it going or one person dictates to the group.

When it works well it's definitely worth it!

Good luck

Mindy

[Marie]

There is an AWAKE group 30 miles away from my home in Louisiana. I have been a member for almost 5 years, and have been notified of only one meeting about 2 years ago.
That meeting demonstrated the different kinds of masks one can use. I think they have trouble finding someone to head up the group.
Marie

[Gerryk]

I attended the group in my town again last night. What a difference the weather makes. The meetings are every odd month and our last one was the night of a major winter storm. Ok, not really a major winter storm but it was for the people around here who forget how to drive.
Anyway the roof was packed, their were at least 40 people there and four people from the DME.

Last night was an open forum Q & A session, with pressure testing of machines being done.

I don't know if it is a good thing or a bad thing but everyone there from the DME knew my name but I never saw them before or met them.