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How many members of this site also belong to other support sites or groups?
In my area our A.W.A.K.E. group meets once every quarter. It is very useful to new CPAP users as well as old-timers, like me. We usually have either a CPAP manufacturer, or DME supplier, or other sleep disorder professional who will present a program. Personally speaking, each time I attend I learn something new - and I can help new users, as well.
I was wondering if there are other such support resources that members of this site also use.
Check out: http://www.sleepapnea.org/awake/index.html
Views: 211
Replies to This Discussion
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Permalink Reply by Mike on
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Great question, Samuel. I'll be following this thread with great interest. When I lived in the SF Bay Area, I always went to the monthly A.W.A.K.E. meetings at Stanford and found them incredibly helpful and informative. So when I moved to the NYC-area I was so disappointed that there wasn't one in the NYC area that I successfully lobbied to have one started up in NYC: Manhattan A.W.A.K.E. Sleep Apnea Support Group
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Permalink Reply by Mary Z on
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Mike, what's the process for getting one started in my area?
Mary Z.
Mike said:Great question, . So when I moved to the NYC-area I was so disappointed that there wasn't one in the NYC area that I successfully lobbied to have one started up in NYC: Manhattan A.W.A.K.E. Sleep Apnea Support Group
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Permalink Reply by Barbara Zarrella on
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Nothing in my area in FL. I belong to a two year old group that formed We became 'acquainted' on the ASAA forum and have been a great support to each other over the past several years in many ways.
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Hi Mary -- I'd look at http://www.sleepapnea.org/awake/index.html and see if there's not already a group in your area. if there is, then it's less likely that the ASAA would want another over there. If there isn't though, you should contact the ASAA directly.
Mary Z said:Mike, what's the process for getting one started in my area?
Mary Z. Mike said:Great question, . So when I moved to the NYC-area I was so disappointed that there wasn't one in the NYC area that I successfully lobbied to have one started up in NYC: Manhattan A.W.A.K.E. Sleep Apnea Support Group
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Permalink Reply by RockRpsgt on
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We have at least 5 A.W.A.K.E. chapters in the Indy area. Three of which are supported by the hospital network that I work for in some way or another. I believe the next meeting is June 29th. I will try to get some info posted.
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I would have sworn that when I checked before there was not a chapter in my area, but there is right in my home town. I've already called them and left a message.
Thanks Mike
Mike said:Hi Mary -- I'd look at http://www.sleepapnea.org/awake/index.html and see if there's not already a >
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Supposedly there are two A.W.A.K.E groups w/in a half hour of me. Owosso and Saginaw, Michigan. I have attempted to contact both on more than one occasion. Neither has bothered to respond. The Saginaw "group"' contact is thru a sleep lab. The secretary says she will leave a message w/the AWAKE person. I've never received a word. So much for AWAKE in my area.
FORTUNATELY, one of our local hospital's sleep center and VNA c0-sponsor an apnea support group. Its not quite so "progressive" as the Manhattan AWAKE group but its a pretty good one. I enjoy it and usually come away from each meeting having learned something new and of value.
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Permalink Reply by RL on
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I am just under 4 months on CPAP, and was excited to go to local A.W.A.K.E. support group meetings. I have gotten so much helpful information from SG that I had similar expectations for these groups. There are a few within close driving distance for me.
The first and closest one I went to was in February, sponsored by a hospital based sleep center. This group meets every other month and called me back with info for the meeting, and mailed me their flyer about their meetings for the year. February, being associated with women's heart disease (or something like that), they listed a program on heart disease and sleep apnea. Sounded good, but the speaker turned out to be a dietician (if I remember correctly) who presented the fda food pyramid and dietary recommendations, with no discussion or direct relationship to sleep apnea. A few audience members did ask a few questions related to sleep apnea, which were barely or not answered by any of the professionals present. I had tried to talk to the lady who seemed to be the organizer, after the program, and asked her if they have actual "sleep professionals" speak at their meetings sometimes. She said they do. This would not be obvious from the listed upcoming programs, so I am skeptical how that would play out. I was so disappointed with this meeting that I had to hold myself back from reviewing this group. Virtually no one there talked about sleep apnea. At the end of the meeting, (the group leader (?)) had left the room, and I stood up and did a quick verbal survey - asking how many there had been to an A.W.A.K.E. group meeting before. They all said no, they had not been to a meeting before. They were mostly older folks, seemingly not very computer savvy (unlikely to find SG or do their own research). After much thought about this, I decided that I should back off of my criticism for now, not knowing how long this group has been around, and hoping they may get better in time, and if anyone could get some help or benefit, it would be worth their trouble. Of course these groups are free to patients, and the organizers are volunteering their time. Since there are significant numbers of patients who are unlikely to search the www for info, this group would still possibly help someone. They did have a DME rep checking cpap pressures for those who brought their units.
The second, and different local group had a meeting in March. Again, they did call me back, and did mail me their brochure. This meeting had to be postponed due to weather. I spoke with one of their organizers by phone, who told me that they were rescheduling the meeting sooner than later due to member's demands. This group is associated with a different hospital sleep center. Their topic was a group member panel discussing "Practices to Increase CPAP Tolerance". This program was as advertised, and the organizer had told me they were experimenting with this format at the request of members. I was impressed with this, and found the meeting to be interesting, with several members telling their own apnea stories, and taking questions as they came up. There were a few people whom I think were sleep techs associated with the sleep center, helping with answers to questions as needed, and one DME sales rep, not an RT. This group also had a raffle for a few door prizes. I won a free mask - a ResMed Mirage Activa! I have only used a nasal pillow mask so far, so I am not sure what I want to do with this yet.
This group also runs a program called CPAP Saturdays once a month. They run this in the hospital sleep center lobby, and assist patients with mask issues, and any other equipment help needed. They also have a loaner program, allowing patients (anyone, not just their patients) to "check out" a mask to try at home for a few weeks or more. These masks must be returned to them, as they cannot sell them, but this would allow patients to find out what works best for them, and what to ask their DME for, without incurring further expense or insurance hassles. I was really impressed with the generosity of this program and their willingness to work with patients as a public service. I attended one of these meetings, at which a manufacturer's rep (not my DME) was there, showing the Sleep Weaver mask. I was curious to check this out, so the rep offered for me to try one on, and then gave it to me! I tried this one night and thought it worked well, but decided to wait on using it regularly as I am doing well with my ResMed Swift LT for her, and am focusing on therapy efficacy with my APAP (not wanting to change to many other variables right now).
I had asked at the first group if they had any association with the other groups in the area, and they said no. So there is a wide range of help to be had at these support groups. It really depends on who is involved in running them locally, and probably member interest and level of professional and facility support as well. I wonder if there is a national forum for A.W.A.K.E group organizers to share ideas and feedback.
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