A.W.A.K.E. Support Groups

I was offline with another member and mentioned the AWAKE support groups, and she had never heard of them. I have seen them advertised, but not tried them:

http://www.sleepapnea.org/awake/aboutgroups.html

There is one near me in Lakewood, WA that think I'll look in on:

http://www.sleepapnea.org/cgi-bin/database.pl?WA&&State

Has anyone got any input on them? Or any other support groups?

Thanks!
Barbara in Tacoma (Well, actually Lakewood, but no one outside of Pierce County knows where that is, unless you watch "Cops" regularly...)

I called several of their groups when first diagnosed, some of them had disconnected phone numbers, some called me back to say they have no meetings during the summer, and would let me know when. Only one actually claims to meet, but was a bit far. The narcolepsy support group run by a famous center for narcolepsy research in Monetfiore Med Ctr in the Bronx, wanted a high fee for a very amateurish home typed newsletter, and thus turned me off.... but they claim they really do meet.
I was very disappointed, 3 hospital sleep centers told me that of course they have regular meetings and added me to their mailng list. Haven't heard yet.

Three or four hospital sleep centers in the Denver metro area offer AWAKE groups. The one I go to has programs every other month, including an annual vendor fair where you can see products. I was disappointed at how little the vendors knew about the equipment they are selling. They couldn't answer even basic questions.

I go to a meeting if there is a speaker who looks interesting. The few I've attended have been worth the time and drive. The best part of each meeting is that people ask questions of the sleep techs and the DME RTs who attend. The RTs seem to be a much more informed group than the RTs at the DME I am forced to use on my insurance plan. The sleep techs check your machine pressure for free.

If you attend, you too may be able to share your knowledge gained from cpaptalk.com. Attending is a good way to empathize with the large ranks of uninformed patients who haven't discovered this forum and who aren't getting good information from other sources. The light bulb/our collective wisdom section has a meeting design, in case you want to lead a meeting.

I imagine the quality of AWAKE meetings varies a lot, so the only way to know how good they are is to attend one.

So far, it seems there is a VERY WIDE VARIANCE in the quality of DME's out there. Hence, the need for support groups and this forum. As I have dropped my DME after one week with them, I think an opportunity to meet other DME's would be a good one. I think I'll go check out the local support groups and see what I find out.

Thanks!
B.

I am going to one May, 8 will be my first meeting. I asked my sleep Doc. how many vendors would be there, sense I have a Remstar M series auto with C-Flex, he said just one, he said he made the mistake of having more than one and they got in to an argument over who had the best equipment, so he only invites one at a time now. Should be interesting, will let you know how it goes, may get some free-bees.

Dan

It is so hard organizing and keeping an A..WY.A.KA.AE. group up and running. I am the coordinator of the the Southern Nevada(based in Las Vegas) A.WY.A.KA.AE. group. I spent 4 months looking for a sponsor until finally the CEO of local sleep center finally stepped up. People will respond and it will look like we'll have 10-12 people attend(not bad for a start) and then only 2-3 people show up. Very frustrating since we have gone through trouble of arranging speakers... Our big inside joke has become-maybe we would get better attendance if we offered cocktails and gambling. Still I get 2-3 calls a week from people interested in our group and then after I mail out postcards for meetings people sometimes aren't even courteous enough to even call me back.I don't mean for this response to sound so negative but Iamb just venting. Our A.WY.A.KA.AE. group is something that I feel very strongly about and Iamb gonna plug on and keep it going. Any suggestions???