Awake meetings

Gerry,

I do not know which one you attend, but I have e-mailed whoever is running the meeting in Naperville 3 or 4 times in the last year with no response. My therapy has been successful for over 20 years but from my visits to this forum I have found many ways to improve upon it and was hoping to get more from an Awake meeting, as I have never attended. I imagine that there are many out there who are just as disenchanted from lack of response from those who run the show, and for people I talk to my referral is to this website.

An Awake meeting for me would be a two-three hour drive. Maybe not that far in miles, but too far in time, with unpredictable traffic. Very hard to justify. Especially if at night and not well facilitated, and most meetings are not well done.

This forum is available 24/7, and has been my support group especially since I have treated as "set it and forget it" patient by my Dr.

Sleepy Taz wrote:Gerry,

I do not know which one you attend, but I have e-mailed whoever is running the meeting in Naperville 3 or 4 times in the last year with no response. My therapy has been successful for over 20 years but from my visits to this forum I have found many ways to improve upon it and was hoping to get more from an Awake meeting, as I have never attended. I imagine that there are many out there who are just as disenchanted from lack of response from those who run the show, and for people I talk to my referral is to this website.

I think I heard the guy who was running the one in Naperville had health problems. The place I go to has several offices throughout illinois and I believe they coordinate more than one awake group. I am putting their info below. I would call Nicole first as I believe she has sent out the past few notices. I also listed the contact info that I have for the Napervill group. If you want more locations go to http://www.sleepapnea.org/awake/index.html You will get a listing for all groups in Illinois that post their meetings. Also ask your DME or RT about one.

Gerry

State: IL
City: Naperville
AWAKE Group Name: Naperville AWAKE
Contact Name: Dave Hargett
Telephone: 630-759-5563
Zipcode: 60540
Meeting Schedule: Monthly
Website:

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State: IL
City: Orland Park
AWAKE Group Name: Orland Park IL AWAKE
Contact Name: Chris Crockett, Nicole Anderson
Telephone: 708-364-0261 x288
Organization Name: The Center for Sleep Medicine
Zipcode: 60467
Meeting Schedule: Every other month

One of the biggest benefits of meetings like that is the "I am not alone" in this light bulb. All the information is nice but the biggest block to successful using of xpap is the mind set of the user even Dr Park mentioned that on his site. It should probably be run more along the lines of a AA meeting then a information evening.

I didn't realize that some of the AWAKE meetings have speakers, etc. I assumed that they were just sleep apnea patients who met every month or two. I imagined this gathering with maybe two or three people, and that didn't appeal to me. Most CPAP users (especially newbies) need ongoing support and information, and meeting only once in a while wouldn't cut it. That's why I come to this forum regularly.

I think I'll contact the local groups and ask about their meetings. If I lived near the Manhattan group, as Jeff does, I'd be a regular attendee--especially with Dr. Park there! That would be GREAT!

~ DreamOn

I've been to two of the other Manhattan AWAKE meetings...the first was shortly after I started, because I had gotten a post card in the mail about it. And, the last was because I happened to be in at the DME getting something...and my RT is the area facilitator .... and she mentioned that it coming up (probably remembered that I had asked about when they were in the past, and why I wasn't getting notices....and also missing them....).

She stopped sending post cards, and only using the newspaper to publish the meetings. But, it has been nearly 15 years since I subscribed to a newspaper (and 3 cities ago)...though I did used to buy an occasional paper, which stopped when I got a DVR and didn't need the weekly TV listing guide.....and the newspaper website didn't list the most recent AWAKE meeting on their events calendar. I had suggested she set up an email list.... lists.manhattanawake.info wasn't working yet, because of dream host issues....so no collecting of emails at the last meeting or announcing its existence. Plus attendance was very light (guessing it wasn't printed in the newspaper either).

First one, was some RT/DMEs and just general Q&A, where a number of the questions were provided....kind of good though...since they talked about the importance of having a data capable machine and mentioned cpaptalk.com. Plus showing up with an MRSA infection on my nose bridge seemed to change a lot of things.

Last one, the guy that runs the hospital sleep lab talked about stuff....some of it was very interesting. Also good since he's an xPAP user.... He did talk about the frustration of testing to get an ASV....having to 'fail' cpap and then 'fail' bipap, even though the results of the first sleep study suggest it as necessary.

And, just what is 'fail' cpap? Am I failing?

The Dreamer.

We live in a pretty populated area near the NJ shore and I was so happy to hear that the large medical center a few miles away holds AWAKE meetings. When I called the hospital to ask for information I was told the meetings had been cancelled for over a year because of lack of interest.

Dori, call them back and tell them your interested? Post on here to see if their is anyone else on here from your area.
If they don't have people interested, it's because they don't want them interested. If the awake meeting are run properly they can be a benefit to the pt and the staff running it.

Once in a while here they had reps out from the companies that this lab dealt with. The reps answered any questions you had and if they couldn't answer you then they got your email or phone number to answer you.

They do allow time for the people to talk to each other but not much. Sometimes another user can help someone out better than an rt or dme as the user is more familiar with that particular mask or machine.

Gerry

Gerry, thanks, I will do that after the holidays, maybe a little activism is needed. I know there must be many people in this area who have OSA.

I called the number listed for my area, but the lady that answered said they no longer were involved. I live in Wilmington, N.C. is there any near to where I live or if not will there be another place to meet. By the way you can take the center in Burgaw, N.C. off the list, who ever is in charge of updating it.

I attended one AWAKE meeting at East Jefferson Hospital.

It was interesting, but I was saddened to see how many people had no idea how to handle the most basic of practical activities -- things like hose covers and hose managers. Or returning a mask that doesn't work.

There but for the grace of the friend who recommended this Forum when I was looking for some information for my brother-in-law go I....

I did make the acquaintance of some of the local DMEs who were very nice, but, alas, not covered by my insurance.

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

There aren't any here. I badgered my sleep clinic about setting up some kind, ANY kind, of get-together, but they weren't interested. Said there'd been little attendance in the past and that was that.
I wonder about the possibility of getting together via SKYPE?
Gerryk, it'd be nice to go with you to one of your meetings!

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

<wry grin> Can't go to a meeting if they aren't having them!

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.

Committed to the belief that the ASAA A.W.A.K.E. Network must be patient-centered, local A.W.A.K.E. members plan and implement each group's activities so that they meet the needs of each individual group. Meetings, led by the A.W.A.K.E. coordinator, are held regularly and guest speakers are often invited to address the group. Topics may include advice on complying with CPAP therapy, legal issues affecting those with sleep apnea, weight loss, and new research findings.

In order to advertise your affiliation and use the name of AWAKE,

1. you must sign a Statement of Understanding (http://www.sleepapnea.org/awake/forms.html#statement),

2. complete a brief one-time form About My Awake Group (http://www.sleepapnea.org/awake/forms2.html) and

3. complete a very brief Meeting Summary to be submitted (http://www.sleepapnea.org/awake/forms3.html) to the national office after each meeting.

In return you get to use the AWAKE name, you get a coordinator's manual and you get educational materials to hand out at meetings.

No more excuses for not attending meetings. Become a coordinator.

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