Why Don't AWAKE Groups Work?

[NightHawkeye]

[Actually, the problem is more likely to be finding a physician willing to stick his neck out and answer questions in anything other than very general terms, for fear of being sued over something he/she says at the meeting.

I agree. It's a no-win situation for all involved. The status of physicians has been so exalted beyond lunacy that errors are simply not tolerated. (Actually, the truth is that admission of errors is not tolerated.) And yet, by attempting to lock down even the minutest details as they have, they have effectively stifled all attempts, short of lawsuits, to correct the rampant errors and misjudgements which do occur.

In my opinion it is a problem of the profession's own making though, largely resulting from the very mindset they carefully crafted for years. Transparency and openness is necessary to correct it. But, I doubt they are even considering that, because of the short term pain and legal problems it would create for them.

Regards,
Bill

[SnoozeHunter]

Remember, we aren't even suppose to HAVE the software, much less know how to interpret the data. LOL! ...I agree that what you describe would be VERY useful.

Oh, that's right. I keep forgetting that if that information were to fall into the wrong hands, the free world as we know it...

I'll just put my mask back on and not worry my pretty little head about all of those numbers and squiggles anymore.

[tomjax]

Amazing that this thread has been resurrected=- maybe do to a spam posting.

Another thought is that there is little new to be learned and most of those in attendance ask questions that do not interest experienced users.

Maybe a bit like this forum. I am sure many lose interest in the same old postings by newbies and the same old answers. This is perhaps very useful to a new user, but it makes oldies bored.

But this is necessary I suppose. Look over at sleepnet,com and note that the older forums had several postings a day and now only a trickle.There are about 160 days on the present forum- less than 5 per day. In the old days there were 30-40. Maybe the draconian posting rules and removals was the problem and explains why this on is so busy.

But what do I know?
I am anxiously awating the next story on the Britney Spears divorce and her upcoming home movie. That and Madonna's adoption.
With this I do not have time for AWAKE meetings.
tom

[wading thru the muck!]

I am anxiously awating the next story on the Britney Spears divorce and her upcoming home movie.

That's too bad... I thought that marriage would last. Nice to see that they are going to release some home movies... Shots of the family picnic... the kids first Christmas concert... and maybe even a few shots of "the puppies" LOL!

I can't wait.

[JM]

Well, since this thread has been resurrected...

My 16 yr old son is scheduled for a sleep study in early January. I've convinced him to go to an AWAKE meeting with me tomorrow night. My purpose is to take away the mystique and any fear he may possibly have regarding the treatment.

The local meetings are held the 3rd Thursday of every other month. But, for this reason, I might have attended when I first started my therapy. But, in the three weeks I waited for the 1st meeting, I needed to change my settings, mask and had developed many questions. Through this, I realized the DME and Doc I was working with were incompatible to my health.

Had it not been for this group I might have given up immediately.

JM

[RachelM]

My first few days/weeks on CPAP I desperately wanted to talk to someone. I did a web search on CPAP Support Groups and thus was made aware of AWAKE. There are a few local chapters in my large metro area but none are currently meeting. They took my name in case they start up again. Somehow I also found a link somewhere to CPAPtalk.com. Most of my questions have been answered and the requested empathy found, right here. I didn't realize until I read this post that I no longer am interested in a local support group. I guess my needs were met right here. Thanks to all who responded to my needs.

[Wulfman]

My first few days/weeks on CPAP I desperately wanted to talk to someone. I did a web search on CPAP Support Groups and thus was made aware of AWAKE. There are a few local chapters in my large metro area but none are currently meeting. They took my name in case they start up again. Somehow I also found a link somewhere to CPAPtalk.com. Most of my questions have been answered and the requested empathy found, right here. I didn't realize until I read this post that I no longer am interested in a local support group. I guess my needs were met right here. Thanks to all who responded to my needs.

Glad you could make it to the meeting, Rachel.

Maybe it's more like a "gathering"......24/7.

Best wishes with your therapy.

Den

[rock and roll]

If somehow the DMEs or doctors would support them these meetings might work. I would attend but only if I did not have travel across Houston, they actually offered something for my time, and they supplied answers. I thought jokingly that they should be held in the wee hours of the morning as that's when so many of us are on here and can't sleep, maybe do one at a Starbucks. Maybe it could second as a night owls club at that.

[snufflepgs]

I'm in favor of support slumber parties. We can check out each other's jammies and sleep equipment, try on each others' masks, call up our sleep doctors, giggle, and hang up...

[rested gal]

ROTFL, snufflepgs!! I like that!

[KimberlyinMN]

I've never been to an AWAKE meeting and I don't really think I'd be all that interested either. Why? Because I think this discussion board goes above and beyond with answering questions and providing helpful tips, hints, resources. Also, I like to get answers NOW. I don't want to have to wait a day or two, or a week or even a month to maybe get a chance to ask a question and even then you might not get an answer until the next meeting. Additionally, some of the questions that I've found being asked here might not even have been asked if you were face to face with a bunch of people. Would I have even thought to ask some of the questions? No.. but I sure am glad that others have.

Kimberly

[DME daddy]

I work for a DME and have attended literally a 100 awake group meetings over the years on many states. Most of the meetings have some good content and provide assistance of one sort or another to patients.

Why are there so few support group meetings? Simply put, they are run by sleep labs or Doctors. They are a LOT of work. They often cost money, especially if mailings are done.

Why don't labs get together with each other to put on awake groups? Because they are competitors and generally do not like or trust each other. Why don't doctors get together and do them? Same reason.

Why don't DMEs do awake groups? A few do. You might be surprised to hear that my DME was told in no uncertain terms by a local group of doctors that we were to stop our awake group or they would no longer refer patients to us. They said that we had a commercial interest in the group even though we had an open door policy to other DMEs. Needless to say, the support group was shut down.

Patient run awake groups have existed for short times and no doubt do exist now. They are as good as their leadership. Some do a geat deal of good. Some just repeat their same old sleep story till no one comes.

Usually DMEs want to attend and sponsor awake groups but are under the watchful eye of the sleep lab director or doctor. It is a weird situation where the patients want to buy filters, hoses, maybe a mask, but the powers that are consider this commercial and improper. This makes for a numerous parking lot transactions from the trunk of the DME's car. It is totally nuts, especially on winter evenings!

I would say overall awake group meetings are fun and interesting, but the quality is very inconsistent. For actual help, cpaptalk.com is the very best support group. My thanks to all who make it so.

[JM]

I took my son to the AWAKE meeting Thursday night. We were fortunate in that we met the lady who schedules the sleep studies. I recognized her voice and told her she had scheduled my son for Jan 4th. She started talking to him and took a liking to him. She asked If he would like to get in sooner. I explained it would be great if he could get in before the new year because of deductibles etc. Well, Fri afternoon we get a call saying his study has been rescheduled to next Tuesday night. Wasn't that nice???
I also got to see the "M" autopap the Respironics rep had on display. Wow, it sure is a great deal smaller than the "brick." I asked her when the "issues" with the "M" would be fixed. At first she said that it never had any issues but after I brought up what I had read here regarding the high pitch sounds she said it had already been addressed with more insulation.

JM

[Vader]

I heard that the next AWAKE meeting near me will feature a performance by an accomplished didgeridoo player. He's supposed to be offering playing tips and also info on where you can buy a didgeridoo.

Somehow I don't see this working here, because the last meeting I went to was mostly senior folks who didn't have interest in much more than the free food and drink.

[lvwildcat]

Yes-2 words-VERY FRUSTRATING!! I am the the coordinator of the Las Vegas
A.W.A.K.E. GROUP. This past week I got 6 confirmations.Day of meeting I got 2 voice mails of members canceling.So it still should have been myself and 4. 1 other member showed up! I was so angry because isn't it just common courtesy
to call and cancel? We had a speaker who took time to come... I really want to keep this group going but I'll reevaluate after next meeting or so. Thanx for just letting me vent. I feel soooo much better. Barb