Your experience with the A.W.A.K.E. Group in your area?

[JoyD.]

Even though I live in a substantially sized city, there are no AWAKE groups here or anywhere nearby. I'm toying with the idea of starting one. I'd like to ask you all:

1) Has anyone actually "started" an AWAKE Group? If so, any tips? I know their website has resources to help, but I thought you may have some important input . . . the factors I might want to consider before launching out if I decide to do it.

2) To those of you who attend a Group in your area, how valuable has the Group been to you? What has been most valuable?
What have you NOT liked about the AWAKE Group? Any suggestions?

Still pondering . . .
Thanks,
Joy

[Linus]

For those who are not sure if one is in your area, here is a link for the AWAKE groups http://www.sleepapnea.org/awake/index.html

I have not visited a group yet, but I hope the link helps.

[Eureka]

JoyD --
I am new to this cpap world, beginning treatment Jan. 1. I live in the Georgetown KY area, so would be interested in what you find out about starting an AWAKE group.

CLW

[roster]

I am attending one started by a local sleep lab. They meet five times per year. This group has had four meetings. The sleep lab wants to eventually have a patient volunteer to take over the group and run it.

If you like your sleep lab, you may want to ask them to partner with you to get one going.

[Gerryk]

Since none are in your area, check to see where the closest one is and contact them. Perhaps they will help you set one up in your area.

[Slinky]

My experience has been TOTAL NO RESPONSE. There is a group north of me and another south of me and neither has responded to e-mail nor phone call. I even called the sleep lab that the one AWAKE group is affiliated in some way with and the sleep lab staff said they would give "him" my message and have him contact me. That was a YEAR AGO or better.

Fortunately our local hospital's sleep lab staff and VNA have partnered up to provide a local support group w/meetings 5 times a year. I think last year was their first year. Its a pretty darn good group considering they are still getting their feet wet so to speak.

They've invited and had most of our local DME suppliers attend one meeting bringing w/them one CPAP device and a variety of masks, etc.
They've had a Respironics Rep and a Resmed Rep at two meetings now who have had an xPAP and a variety of masks on head molds and have done some mask fitting.
They've had a cardiologist w/a special interest in OSA and CPAP and other therapies - and in CSA - speak.
They've had a dietician speak, since then we've had fruit, cheese, salami or similar and crackers and water or fruit drinks instead of cookies, coffee and soft drinks.
They had their sleep doctor speak. I wasn't too impressed. Altho the staff all love him, he doesn't consult w/the patients, just "reads" (re-scores the scored PSG data), dictates his interpretation which is then sent to the referring physician. He is available for consultation W/THE REFERRING PHYSICIAN. I have no use for a "sleep doctor" who keeps his distance from the patient. I was good. I didn't say anything, it was my first meeting .... but I was sure thinking plenty and NONE of it good.

They have multiple drawings each month for small "doorprizes".

[Pad A Cheek]

Hello Joy,
I live near a city that has an AWAKE group as well as a sleep doctor run support group for his patients in particular. I have attended both of these meetings, and can say that they vary in the information as well as the benefit that they provide.
The AWAKE meeting has speakers talk about a topic that the leader of the group thinks is relevant. These meetings are every other month. The topics have been mildly helpful, but only if the patient is uneducated about sleep disorders and the health impacts of the sleep disorders. This cpaptalk group is WAY more helpful for practical advise for CPAP users. I will say that once a year they have the manufacturers distributors come in and share about the new products on the market.This meeting is the best attended of the whole year. They also send out notices about the meetings so people have to sign in with their addresses when they attend the meetings. This is an important part of running these meetings, and also an overhead cost.

The Support Group, called a Pajama Party by the local sleep doctor, is much better. The doctor himself is a great and thorough speaker with wonderful information presented in Power point format with question and answer sessions. He asks the group what they want to learn more about and focuses on the group's need for information. He has also invited speakers to talk. They have been well educated and well prepared. I have learned quite a bit from this very up to date sleep doctor. He is quite approachable and is ready to teach any patient how to change the settings on their CPAP if they are that interested in their therapy.

Also I have been a speaker at an AWAKE meeting in Manassas, VA. I spoke to a small group about the tips and tricks to make using CPAP successful. Two sleep techs were in attendance and actually left to go encourage others to come listen, because they were excited about the information I was sharing. I felt really sad for onepatient and his family that was there. They wanted to know about the surgery options and were not going to stay when they learned that I was not talking about the surgery options. They did stay and really enjoyed the talk and afterwards told me they really had no idea that diabetes, stroke or heart disease is related at all to Sleep Apnea. This man already had diabetes and high blood pressure and other health issues.

I also have attended a DME run support group for their patients. It was a one time thing, and the patients were really wanting to VENT about their particular situations. There is a need for that as well. Patients have the need for psychological support also. I would say if you can have an interactive type situation, you can build a pro active group of sleep apnea treatment advocates there.
Good Luck Joy.
I also will say at each of these gatherings, food was provided. People like a free meal.

Karen

[6PtStar]

I did not think there was one in my town either but I saw a listing somewhere that said we had one. I contacted the person listed. Seems she works for the local hospital run sleep lab. She said she had been so busy she had not had time to do anything with it in almost a year. I gave her my name and information and told her if they got back on track to let me know. That was over 6 months ago and have not heard anything out of them yet.

Jerry

[Gerryk]

My experience is similar to the one Slinky had. I put my name in to be contacted and was never contacted. I made a few phone calls and just gave up. This all happened four years ago when I was originally diagnosed with OSA. Once I was retitrated and put on BiPap I asked about the meeting and was told I was put on the list. I waited and after hearing nothing for a couple months I called and asked. The woman at the sleep lab was not very nice and said you will be notified when we get around to it, that it usually takes a few months to catch up to the new people. I finally got an email after I contacted her boss and was put on the notification list.
Gerry

[DRMcMann]

I'm new to the forum and have only been [knowlingly] dealing with sleep apnea for about 4 months. I received an invite today to: The Obstructive Sleep Apnea Association's, Southern New Hampshire, A.W.A.K.E. Network Meeting;

Agenda: New CPAP Mask Designs, Proper Selection & Fit, Your Options, New Accessories and Strategies to Aid in Comfort with Your Therapy, New CPAP/Bi-Level Device Technologies.

It's sponsored by the New England Sleep Center at Catholic Medical Center and North Atlantic Medical Services/Sleep Therapies of New England, LLC - the facility that did my sleep study and my DME (both positive experiences, so far).

Despite the lack of positive info on this topic so far, I thought I'd give it a try. And share the info with anyone else in the area.

[Wulfman]

The closest ones to me are HUNDREDS of miles away.
Oh, well........I probably wouldn't go, anyway. (unless it would be to teach them a thing or two.)


Den

[bootz]

I am in Pittsburgh and unfortunately there is no A.W.A.K.E. representation. I wouldn't mind contributing time to help the group get started. For a city the size of Pittsburgh I think a meeting every other month would be appropriate. Any other Pittsburghers interested?

[roster]

The closest ones to me are HUNDREDS of miles away.
Oh, well........I probably wouldn't go, anyway. (unless it would be to teach them a thing or two.)


Den

Den, They would be wise to pay your travel expenses!

[Gerryk]

The group that meets in town here is supposed to have a meeting this month but I haven't heard from them. I wonder if they will wait and notify me a couple days before again like last time.
There is another one about 15 miles away I may try and go to that one.

[JoyD.]

DRMcMann wrote: I'm new to the forum and have only been [knowlingly] dealing with sleep apnea for about 4 months. I received an invite today to: The Obstructive Sleep Apnea Association's, Southern New Hampshire, A.W.A.K.E. Network Meeting;
Agenda: New CPAP Mask Designs, Proper Selection & Fit, Your Options, New Accessories and Strategies to Aid in Comfort with Your Therapy, New CPAP/Bi-Level Device Technologies.

DRMcMann, It sounds as if you have an excellent Group there in NH, unlike most of the other reports. Let us know how it goes. ALSO: WELCOME TO THE CPAPTALK FORUM

And to everyone else who shared . . . thanks for your openness in sharing your experiences about A.W.A.K.E. groups. Sounds like most of the groups are run by professionals who are too busy to keep things going. Too bad.

I've just started a NEW POST . . . taking the temperature of cpaptalk members from parts of the KY - OH - TN area to see if there is interest in meeting up periodically "face to face". We'll see how this goes . . .

Joy