CPAPtalk.com

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rooster wrote:There is no 'they'. The 'they' is you. Just about anyone can become a coordinator and start arranging meetings. Then you set the agenda and invite any speakers if you care to. You run your own show.

Right on! You can do your own thing. You don't even need to join AWAKE. Anyone can get a room in a library, a Y or meet in a Starbucks. Just post some signs in various places and see who shows up.
I belong to an informal knitting club, every second Thursday (Or every second alternate Wednesday at the other side of town, or every Sunday in the library downtown) we meet in a cafe. It is all coordinated via a Yahoo group. There is no president, no treasurer, no moneys, just an internet group and at every meeting there are at least 3 people, sometimes 20. Just to knit and exchange ideas. I have run or belonged to groups that do medieval recreation, machine knitting, acupressure, doll making, spiritual discussions, drumming, political conferences, lesbian mom & kid playgroups, and many many more. Most of them had no official name or standing.

Just do it!

secret agent girl wrote:And...pay them some money, right?

It's not a secret - there are no fees.

rooster wrote:

secret agent girl wrote:And...pay them some money, right?

It's not a secret - there are no fees.

Just $30 for the book.

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

". . . The $30.00 fee for the guidelines covers the cost of production, shipping, and handling. Every group is required to purchase this comprehensive resource book . . ."-- http://www.sleepapnea.org/awake/potent.html

Also

"Membership in the ASAA is not required but is strongly recommended."

That would be another $25, if you did it.

jnk wrote:Wow. I can't believe that, at this point, I'm the ONLY "Yes regularly" guy!

I don't attend regularly because some days they are on my shift day, others I have something else going on. I try to attend when I can, but I run Cub scouts and coach baseball in the spring. I gave up basketball in the fall it was too much. I have also forgotten about meeting a couple times.

Gerry

Gerryk wrote:

jnk wrote:Wow. I can't believe that, at this point, I'm the ONLY "Yes regularly" guy!

I don't attend regularly because some days they are on my shift day, others I have something else going on. I try to attend when I can, but I run Cub scouts and coach baseball in the spring. I gave up basketball in the fall it was too much. I have also forgotten about meeting a couple times.

Gerry

That's understandable. I'm not really all that regular, myself, as far as that goes. I think I'm batting about .500.

I just meant that I'm really glad you made this poll, because I had assumed that more attended. Very enlightening.

It is my opinion that the best thing that could happen at such meetings would be to show the audience how to sign up here and post questions, anyway, as far as that goes.

If you did that, you might not want to be too clear about that when filling out your A.W.A.K.E. report, though.

jeff

jnk wrote: Wow. I can't believe that, at this point, I'm the ONLY "Yes regularly" guy!

Not surprising since you are one of the few who can get to meetings that have speakers like Dr. Steven Park, Dr. Jay Neuhaus, Dr. David Yong Zhang, David Rapoport and others.

jnk wrote:It is my opinion that the best thing that could happen at such meetings would be to show the audience how to sign up here and post questions

Two of us cpaptalk members agreed to the same at the AWAKE meetings we were attending. Even for questions we answered there, we proposed the patients go home and post the questions on cpaptalk.

The other important item at the meeting is to let patients know we have machines and software that monitor our therapy. Most of them have been kept in the dark.

rooster wrote:

jnk wrote: Most of them have been kept in the dark.

From my limited experience of handing out the cpaptalk link to
the desperate people at the meeting I attended and
having ONE actually post a few times,
most people want to remain in the dark.
They don't want to know,
they want to blame someone/something else for
their therapy failure.

I also think that the people at the meetings are
still in the "doc-DME-sleep lab folks are God" syndrome.
When I asked if people had data capable machines they
looked at me like I was from Mars.

We are a small rebel base in a large Universe.
Not everyone wants to hear the message.

rooster wrote: . . . Most of them have been kept in the dark. . . .

Fortunately, Rooster, that is not the case at the Manhattan, NY, meetings. Mike makes the point about the importance of efficacy-data machines at every meeting that I have attended. In fact, at one of the meetings, the DME manager who sponsored the meeting made the point himself.

jeff

My DME is also the sleep lab and they answer to the docs that are on staff and run the place. I am going to send an email to the woman who is the manager and talk to her about our meetings. See if we can have them more often and talk about some of the things that were brought up here and getting the people out of the dark. She has seen the light with me. She rarely sees my machine and knows she will be emailed a copy of the report or the files themselves. If she needs anything else she lets me know.

Gerry

rooster wrote:No more excuses for not attending meetings. Become a coordinator.

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

Flatly, I don't have time to become a coordinator.

I'm already coordinating a 1300 person list for the diet I follow.

I work part time. I have to do water therapy or deal with extreme pain. CPAP has significantly helped that pain, but handling it requires a multi-pronged approach. And I'm doing research for a project that's been on-going for a very long time -- and which is very dear to my heart.

Sometimes, one has to recognize their limitations.

[quote="Kiralynx"
Flatly, I don't have time to become a coordinator.

I'm already coordinating a 1300 person list for the diet I follow.

Sometimes, one has to recognize their limitations.[/quote]

A few years ago (before OSA) my daughter gave me a cup which said "Stop me before I volunteer again"

BlackSpinner wrote:A few years ago (before OSA) my daughter gave me a cup which said "Stop me before I volunteer again"

Amen!

Kiralynx wrote:

one has to recognize their limitations.

It's a good policy to do so.

BlackSpinner wrote:A few years ago (before OSA) my daughter gave me a cup which said "Stop me before I volunteer again"

Somebody should've given me a cup like that.....there was a time where I was volunteering so much, that I wouldn't know if I wasn't having sleep problems....because I wasn't sleeping.

I had a fulltime job (for a startup, so that's like 12 hour days)....and my volunteering was like a fulltime job or more.....

I start out thinking that I'd move to a new city and things would be different, or something....but so far I've managed to get myself into trouble wherever I've gone. Though I have cut back some this last year....

The Dreamer.