Why Don't AWAKE Groups Work?

[johnnygoodman]

Howdy,

Why Don't AWAKE Groups Work?

What would the perfect regularly meeting CPAP discussion group be like?

What would make you want to go to your local group meeting? What would keep you coming back?

Johnny

[Ric]

Since I have never been to an A.W.A.K.E. group meeting, I had to look it up. Plenty of material out there:
http://www.sleepapnea.org/awake/aboutgroups.html
http://www.sleepapnea.org/awake/groups.html
(and lots more, litereally hundreds of them). And besides, previous posts (linda, slumberer and others) made me curious about this.

I almost can't IMAGINE anyone actually going to those religiously over, say, years. But I can imagine a lot of newcomers with lots of questions would derive a benefit from asking questions, listening to other people ask questions, pretty much like happens here. And apparently there are formal presentations as well.

That suggests a reasonably large referral base, and continuous influx of new faces and probably lots of the same questions getting asked and answered repeatedly (sort of like here). The formal presentations by health care providers (who probably have something invested in the process) would tend to keep it going.

Not at all unlike the questions and answers that appear on this forum. I would prefer NOT to have to wait a whole month to get simple questions answered, peer-to-peer, as it were, like what happens here. For myself I think a forum is pretty efficient: think of a question, a few minutes later you have an answer. Otherwise it seems like a pretty good idea for people without computers. (?) (are there any?)

What would make you want to go to your local group meeting? What would keep you coming back?

FREE COOKIES !

[Barb (Seattle)]

Answers to my questions from providers. Having CPAP manufacturers, DME providers, and doctors at the meetings to answer my questions, and respond to my problems. About every other night, I have mask problems. The Activa will make a "ssssssssssssss" noise that wakes me up, and also my hubby. I am STILL waiting for the perfect mask *sigh* I do NOT feel "heard" and I have a feeling I'm not the only one

[wading thru the muck!]

Johnny,

Maybe you mean to ask "What about AWAKE groups doesn't work," because in many cases I think they DO work.

That being said, the fact that cpap is something we use everyday makes monthly meetings too infrequent to provide timely answers to our day-to-day concerns. This is where a forum like cpaptalk steps in.

As Ric pointed out, a poster can get nearly instant answers to just about any question that arises, but seeing that we are human animals, there is an intangible element to "support" that only personal contact can communicate. This is where a local in-person group can prove to be invaluable... that is "What would make you want to go to your local group meeting."

"What would keep you coming back?" ... the same things that keep you involved in any organization... commonality of purpose... camaraderie... snacks???

If I was to envision the perfect support group, it would provide the convenience and instant response of cpaptalk with the personal interaction and hand-on aspects of an AWAKE type meeting. Perhaps, in an ideal world, we (the members of cpaptalk) could all gather once a month to review what transpired in the previous weeks and get our hands on all those inventive interface "mods" we so often read about... and of course, for Ric, there would be cookies.

[NightHawkeye]

Never underestimate the importance of Chocolate Chip cookies. Of course, a large variety of cookies is also good; for instance, Double Chocolate Chip, Chocolate Chip with Nuts, Chocolate Chip with Macademia Nuts, Chocolate Chip with White Chocolate, Milk Chocolate Chip, etc . . .

Of course, I'm still not sure I'd go to an AWAKE meeting, particularly if it were moderated at all like ASAA appears to be (and I'm sure that it would be). My preference is a free flow of information.

Regards,
Bill

[Marie]

I would go to one, if I could find one.


I located one about a year and a half ago, then was notified that no one was available to conduct the meeting.They met every other month, and I can see why one would not want to wait for answers that long. I have never heard from them again.
I was new to cpap then, and just wanted any kind of info I could get, and at the same time I found this forum, which has been invaluable to me.

Guess I should try to see if the group is up and running again. It was in a town 30 minutes away.

Marie

[wading thru the muck!]

Of course, I'm still not sure I'd go to an AWAKE meeting, particularly if it were moderated at all like ASAA appears to be (and I'm sure that it would be). My preference is a free flow of information.

The one I attended was run by the President of the ASAA, Dave Hargett. I never felt as though I was not able to speak my mind... but then again it was the first time I was there.

I got a kick out of the fact that the Respironics Rep that was speaking quickly realised that I was going to rebut any mis-information he was about put forth. He did an admirable job of walking the line and after the meeting (off the record) agreed with much of what I had to say.

BTW, the 50 +/- folks that were there, mostly over 60, were fascinated by what was going on at cpaptalk. I guess, "the free flow of information" has universal appeal.

[tomjax]

IMHO, it may just be a fuction of group dymamics and demographics.
In any group for whatever purpose, there must be a critical mass of people necessary to attract enough to get it going and keep it rolling.
Like a Drake equation, there must be enough people, a percentage with sleep problems, enough aware enough with the ability and interest to seek out.
A program or topic that interests them enough to come back.
Forums such as this and others may just adversly affect such by providing as many answers as a person needs.
I am probably just too lazy to be interested and would never consider participating. Probable a lot like moi out there.
This is not unlike the reason a person posts. Many could, but just a small percentage will, thankfully enough do.
This is only a very cursory reply and there are many other reasons.
Just the nature of people, I suppse.
I could be wrong

[wading thru the muck!]

The Drake Equation proports to estimate the number of communicative civilizations in the Galaxy.

TJ, maybe you could further explore your cursory look at the topic and develop a formula to predict the number of sustainable cpap support groups in the Galaxy... we could call it the tomjax equation.


Drake Equation

[mikemoran]

Convenience is the greatest impact to the success of AWAKE or any other support group. I think you will find a majority of those that do attend are of the oldest demographic and found out about the groups by referral not research. Doctor and DMEs directing them to a local chapter. They just aren't as computer savvy or as used to the latest methods of social interaction.

I heard about AWAKE in doing my research online, but the idea of actually setting aside some time to transport myself to a meeting and attending was too much. Especially when I can come on here and get support.

I think our generation is the first to truly embrace electronic communication both in message boards and chatrooms. I remember my dad got a computer and even hooked it up to online but never perused a chatroom even in his interest area. Communicating by typing did not appeal to him, he needed the interaction he could only get face to face or by telephone.

Johnny I know you tried to set up weekly chats on here, but even then you ahd problems with attendance. The board allows you to just drop in and interact on your own schedule nto some specific time.

I also don't know the benefit of having a local meeting from an experiential standpoint for this therapy. We are part of a much braoder community and I want to have as much input as possible. While local input might be available regarding a storefront DME or doctor, there is jsut as much chance those in attendance don't have the same as me. It doesn't matter to me when struggling with mask issues if the person with relavent information lives down the street or on another continent.

I think the only path that may work for AWAKE is if they created a chatroom that was moderated at specific times and had featured guest "typers". this would broaden its impact and creat a lurker environment for those who don't care to interact directly. Johnny you might consider creating an AWAKE hour in your chatroom. But I don't see much more attendance than you had with your shceduled chats.

[slumberer]

To my dismay, before I discovered this fine forum for all thing apnea, I tried to connect to the nearest AWAKE group, which turned out to be a one hour drive away though afternoon LA traffic; I neve went, hence the idea to start an AWAKE group for the metro LA area.

As to why groups don't work, I question the assumption that they are all failures. Also, the criteria by which a group is judged a success needs to be part of the discussion (as it has begun here).

This summer, I would like to begin a group. Because Kaiser Permanente hospital is so close to where I live, I think I'll start there. I would also like to see a Spanish-speaking group to accomodate so many in the LA area who suffer from sleep apnea and for whom there is no informational groups to attend.

Hopefull, more folks will respond with the thoughtful comments that are legion in this forum and I will continue to get a better idea about what success means for an AWAKE group.

[Amigo]

I think the only path that may work for AWAKE is if they created a chatroom that was moderated at specific times and had featured guest "typers". this would broaden its impact and creat a lurker environment for those who don't care to interact directly. Johnny you might consider creating an AWAKE hour in your chatroom. But I don't see much more attendance than you had with your shceduled chats.

Good solution for our electronic age, Mike. It would also be helpful if the "chat" were saved so that those who were unable to attend could still browse through it.

I agree with most about AWAKE group meetings...inconvenient, not cost-effective, and definitely not timely. We do a much better job here in that regard, but I won't argue that it would be nice to have a few "experts" to query now and again.

[Mile High Sleeper]

I'm relatively new to APAP and went to one AWAKE group meeting. My metro area has 3 groups, all about a 45 minute drive thru metro traffic,
sponsored by hospital sleep labs. The dozen or so attendees were almost all senior citizen couples with varying length of xPAP experience. Moderator/speaker was very good, the lead sleep tech. About three DME people were on an informal panel, knowledgeable (unlike my DME). In this open Q&A forum, thanks to my new-found APAP knowledge from cpaptalk.com, I'm afraid I was a know-it-all! Meaning that I contributed several helpful comments. A DME person was fascinated by the AEIOMed mask (aura) I brought w/ me, bought from cpap.com. Meetings every other month, may have a cardiologist next time. If expert speakers are
booked, I'll probably attend for a year.

In general, I agree w/ Wading's comments.

[wading thru the muck!]

A DME person was fascinated by the AEIOMed mask (aura) I brought w/ me, bought from cpap.com.

Based on my AWAKE experience and MHS's quote above confirms to me that the info we get here is cutting edge.

[NightHawkeye]

. . . the info we get here is cutting edge.

As it should be. Free flow of information allows that.

So now I'll take a stab at answering Johnny's provocative question as to why AWAKE doesn't work. If I thought going to an AWAKE meeting would benefit me, I'd go there tonight, or whenever the next meeting is, probably even if I had to drive across state to get there.

I consider this to be important stuff I'm dealing with, as it is to each of us, I'm sure. You can almost always feel the pain and frustration of the newbies who stumble in here. Sure, we have fun with it and discuss it as if we're tuning a carbeurator or working on computers, but it's a lot more than that for most of us, I believe. If it weren't, you wouldn't see the passion exhibited here that is evident every single day.

Now, I've never been to an AWAKE meeting, so I can't speak from experience about that, but what I can speak to is the general mindset of many in the health profession that prevents them from helping nearly as much as they would like to, and is also, I believe, the source of the massive lawsuits against them.

I'm OK. You're not OK. That's it. That's the mindset. It's that simple. It's a deeply ingrained mindset in the medical community. That's the reason the nurse or the lab tech can't tell you squat! That's the reason so many things are treated as controlled substances when they're not. That's why you often cannot get reliable information, much less up-to-date information from a physician's office. They don't believe in the free flow of information because you can't handle it! The mindset is that only they are responsible enough. They believe that somebody else is better at making your important health care decisions than you are.

Operating from that basis is it any wonder that this meagerly funded cpaptalk is so much better than the ASAA forum, despite the massive amount of money that obviously was poured into ASAA.

If I were treated at most businesses the way we're all routinely treated by our health care providers, I wouldn't ever go back. So, somebody please tell me what the benefit of going to an AWAKE meeting would be. All I see it would be is old outdated information; even if they bring in a specialist for a Q & A. Somebody, tell me where I'm wrong. Please.

Regards,
Bill

P.S. OK, so maybe if they had Respironics' latest machine I might go, but I wouldn't drive across state for that one.