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A.W.A.K.E. Support Group Meetings

Anyone have experience attending these AWAKE Support Group Meetings and know if they're worth it?

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Permalink Reply by sleepycarol on March 31, 2009 at 7:55am
We don't have them in this area so I don't have any experience with them. I am interested in how others have benefitted from attending these meetings.
Permalink Reply by Judy on March 31, 2009 at 9:22am
It depends on the individual support group. Some are VERY worth while .... others ....?? The only way you will know for sure is to go to 2-3 before deciding on the worth of the local group. I was impressed w/the first one I went to, bored stiff the next two but the following two were very worth while again. So don't judge based on just one meeting.
Permalink Reply by Judy on March 31, 2009 at 9:35am
Sorry, Carol.

One meeting they had a sleep pulmonologist speak. I wasn't impressed. He was one of those prima donnas who never consults w/the patient, just (supposedly) scores the study, dictates his results and recommendations and FAXes them to the referring doctor (who most likely knows next to nothing about treating OSA) and is available ONLY to the referring physician for consults.

One meeting they had representatives from the various local DME suppliers, each of which brought a different xPAP for demonstration and various masks and accessories.

Another they had a diabetes dietician speak. Since that meeting the refreshments have been fruit, cheese, crackers, sliced sausage of some sort and fruit drinks and water instead of cookies, coffe and tea.

Yet another they had an EXCELLENT and INTERESTING sleep cardiologist who was really progressive and open-minded and even admitted to the failings of some in the sleep and medical profession.

Another they had a Resmed Rep and a Respironics Rep w/scads of masks and who offered mask fittings.

And there was an "open" meeting that involved questions and answers between group members and sleep lab staff. The lack of knowledge by the group members was .... irritating and frustrating, at least for me. The majority didn't know brand and model of xPAP they had been using for months and even years, had no idea of what mask they used or even their pressure setting. I was close to walking out on this meeting it was so frustrating!!! Many had computers but have NEVER looked online for ANY OSA or CPAP information!!!!! Duh! I wasn't able to figure out why or how they managed to find their way to the support group meeting!!!
Permalink Reply by Judy on March 31, 2009 at 9:38am
I really took a liking for the Respironics Rep and he has assurred me he is going to try to make every one of our support group meetings from now on. The Resmed Rep has been at the last two meetings as well and it is no secret how much I have liked my Resmeds. NOW, if we could just get a DeVilBiss Rep to at least one our support group meetings to demonstrate and tell us more about the capabilities of their new DeVilBiss IntelliPAP AutoAdjust!!!!!
Permalink Reply by Mike on March 31, 2009 at 2:20pm
the AWAKE Group Meeting where i live in the SF Bay Area is held at Stanford Sleep Center, and is always well attended. It's held on the first Wednesday of every month and consists of a half hour session before the "main event" where newbies gather to have their questions answered by the head lab tech at Stanford, and then the main event, during which a different expert speaks on a different subject each month. the experts are usually Stanford sleep doctors and sometimes Stanford research scientists. The topics range broadly from "how to read a sleep study" to "melatonin and sleep" to insomnia to "sleep and aging," etc. These talks are very well done, usually accompanied by a powerpoint presentation, and there are a ton of questions from a lively and engaged audience. I almost always get something out of it.
Permalink Reply by Banyon on March 31, 2009 at 9:52pm
Of course it depends on how good the local chapter organizers are. I am going to one that has been started by a sleep practice. They eventually want the members to take over and let them drop out of the administration and oversight.

At the first meeting, I was the only patient present. The doc gave a long and informative PPT presentation (to me alone!) about sleep apnea. Of course I was able to ask plenty of questions. After the meeting ended he stayed 45 minutes more to discuss my case with me. I never had such a chance with the doctors I was paying.

The same doc has given presentations on the damage done by untreated sleep apnea and the danger to the heart. A doctor doing bariatric surgery gave a very nice presentation at one meeting. All meetings have been relaxed and the doctors were willing to try to answer any type of questions.

They asked about topics we would like to have at future meetings. Of course I told the doc I would like to hear about how patients are optimizing their own therapy with the use of data-capable machines and software. The made note of my request. We will see what happens. :) :) I will say the doc heading this up said we can't build enough sleep labs to diagnose everyone in the country who has sleep apnea and therefore we need to be moving toward more portable home diagnosis. !
Permalink Reply by Judy on March 31, 2009 at 10:14pm
Oooh! Banyon! What state are you in? I wanna come to YOUR local support group meetings!!!! :-)

You sound like your support by Stanford is a good one too, Mike.
Permalink Reply by RichM on April 1, 2009 at 12:31am
They have meeting only every 3 months here. I just found out about them the day after the last one so I will attend for the first time April. Its held at the local hospital So I not sure how they are going to be.
Permalink Reply by Mary E. Dow on April 1, 2009 at 12:46am
No idea if they have meetings in this area. How would I know?

RichM said:
They have meeting only every 3 months here. I just found out about them the day after the last one so I will attend for the first time April. Its held at the local hospital So I not sure how they are going to be.
Permalink Reply by Mike on April 1, 2009 at 12:49am
the American Sleep Apnea Association (ASAA) keeps track of A.W.A.K.E. S....

Mary E. Dow said:
No idea if they have meetings in this area. How would I know?

RichM said:
They have meeting only every 3 months here. I just found out about them the day after the last one so I will attend for the first time April. Its held at the local hospital So I not sure how they are going to be.
Permalink Reply by Mary E. Dow on April 1, 2009 at 12:56am
Thanks! I found one nearby. I'll make contact tomorrow!

Mike said:
the American Sleep Apnea Association (ASAA) keeps track of A.W.A.K.E. S....

Mary E. Dow said:
No idea if they have meetings in this area. How would I know?

RichM said:
They have meeting only every 3 months here. I just found out about them the day after the last one so I will attend for the first time April. Its held at the local hospital So I not sure how they are going to be.
Permalink Reply by Patricia Heinze on April 1, 2009 at 9:33am
I live in New Jersey and would love to belong to one of these groups. I think they could be very beneficial. I definitely need a support group. Sometimes I just feel like forgetting about that mask but I know I can't.

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