local cpap support groups

[chunkyfrog]

I just found (and attended) my first local support group meeting.
I frankly hoped for more.
The sponsors are either docs or DME's.
'Nuff said. . .
Still, I may be back in 2 months, keeping an open mind.
I still could learn something during the mingle, and they had good snacks.

[montana user]

I am getting ready to start a CPAP support group here. do you think a sleep tech running the meetings is a bad or good idea? I see your not impressed with a doctor doing it, so would like your advice or anyone else actually before I get too deep into it. Thanks

[sleepnationtv]

here is a good link to a online video support weblog, it has a lot of good infornmation.
http://www.sleepnation.tv

[Janknitz]

I would not like a local cpap support group to be run or sponsored by a local sleep doctor, lab, or DME for the following reasons:

1. My idea of a support group is that issues can be freely discussed. Members may not feel comfortable addressing issues with a particular doctor, lab, or DME if that entity sponsors or runs the group.

2. Competing physicians, labs, or DME providers may not be welcome to present to the group, making the information very one-sided and limited to the sponsoring entity's point of view.

3. Finally, the group moderator may turn out to be someone with expertise in a particular area of sleep apnea diagnosis, treatment, or DME but not someone with first hand knowldege of what it's like to sleep every night, all night on CPAP. I'd rather have someone who is a "hosehead" too.

[montana user]

I would not like a local cpap support group to be run or sponsored by a local sleep doctor, lab, or DME for the following reasons:

1. My idea of a support group is that issues can be freely discussed. Members may not feel comfortable addressing issues with a particular doctor, lab, or DME if that entity sponsors or runs the group.

2. Competing physicians, labs, or DME providers may not be welcome to present to the group, making the information very one-sided and limited to the sponsoring entity's point of view.

3. Finally, the group moderator may turn out to be someone with expertise in a particular area of sleep apnea diagnosis, treatment, or DME but not someone with first hand knowldege of what it's like to sleep every night, all night on CPAP. I'd rather have someone who is a "hosehead" too.

I agree with all the above. I too am a hose head and thats why this job is so important to me. I like to think I would be open to other people coming in to talk, thats why I get on here..to learn from others. Thanks Janknitz for your input! I will take what you said to heart and think this over very seriously.

[Wulfman]

I am getting ready to start a CPAP support group here. do you think a sleep tech running the meetings is a bad or good idea? I see your not impressed with a doctor doing it, so would like your advice or anyone else actually before I get too deep into it. Thanks

I think it would depend on how "enlightened" (educated, open-minded, etc.) whoever ran the meetings might be.

Personally, I think it would be a hoot to take part in "educating" some of the medical professionals in the benefits of patient participation/education/involvement in their therapy.

Considering the fact that YOU have a leg on each side of the fence, you would be the perfect type of person to put on the meetings.


Den

[LoQ]

I am getting ready to start a CPAP support group here. do you think a sleep tech running the meetings is a bad or good idea? I see your not impressed with a doctor doing it, so would like your advice or anyone else actually before I get too deep into it. Thanks

I wouldn't care who runs it if they had the right attitude. I think the problem lots of people have is that DMEs so rarely are supportive of the patient's effort to take control of their therapy, and sometimes doctors are also hostile to this idea. I am fortunate that my doctors, for the most part, are COMPLETELY in agreement with me running my own therapy. I have yet to find a DME that is supportive of me doing my own thing.

Unfortunately, I think it is a conflict of interest for DMEs and that's why forum members' experiences with them are nearly uniformly bad. If DMEs would separate their sales business from their "mechanic" business, like automobile dealers do with sales vs. repairs, the sales people would be fine to deal with. They haven't quite reached that model yet. I suspect some of them will, but not until Resmed/Respironics/etc. are more onboard with that.

[montana user]

yeah seems the DME is always a hot topic...as well as sleep labs at times. Well I can only speak for me, but if I do this support group it has nothing to do with sleep lab stuff, it will be 100% for the people in the room. Me included! I just want people to exchange ideas and let the newer people know that it takes some time, but it is well worth the effort to keep trying, and share some new ideas, etc. thanks everyone for the input, I really appreciate it

[thewetlizard]

I wish there was a support group like that where I live. I'm the only one I know uses CPAP.

[GumbyCT]

I am getting ready to start a CPAP support group here. do you think a sleep tech running the meetings is a bad or good idea? I see your not impressed with a doctor doing it, so would like your advice or anyone else actually before I get too deep into it. Thanks

I have attended a local support group meeting sponsored by the sleep lab at the local hospital and run by an RRT from that lab for more than 2yrs. I don't see how you can run one w/o a tech unless it's run by a doc who has a financial interest in the DME services who will likely teach you how to clean your humidifier and mask each week.

The tech that runs ours does a fine job. I would recommend the doc and the lab who sponsor it to anyone. No one else in New Haven county, CT sponsors one that I know of. I have never been a patient at the lab but have attended with my dad to see the doc and always liked the way she treated him.

If you attend one of these meetings you will realize that you are light years ahead from reading this forum.

The best part for me is seeing some of the new things that the speakers bring in and keeping them honest. Sometimes they only know their little niche.

I salute Griffin Hospital in Derby, CT for sponsoring this Support Group the last Wed. of each month. They are doing their part to help educate sleep apnea patients even if you are not a patient there.

Contrast that with the VA - who outright refuses to educate their patients when asked by me to start a support group for their new users. Help getting patients over the "Denial Phase" is critical for success, IMO. They could even do theirs during the daytime and require attendance for all new users to learn how to use the equipment and how to ask for help when they need it. I think informed patients are the most successful patients.

OSA therapy has such a steep learning curve, I encourage anyone who needs local support to contact Griffin Hospital. Others should continue to learn and read here, cpaptalk.com the BEST forum on the interest.

[dmeguy]

I personally work for a DME in south florida and I am planning to set up our first support group in October. Being a CPAP user myself and being in the industry for over two years I feel that alot of the DME's I have come accross do a horrible job to keeping the patient up to date with all of the new research that has come out involving sleep apnea, making sure that they're using their equipment properly, and also continuous downloads of their data cards to track and help the patients that we have.

So far I have thought of having some local sleep doctors and either RESMED/RESPIRONICS/F & P come and talk about newer topics, I would love some help as to what else fellow CPAP users would like to hear or do at these types of meetings.

Thank you

[GumbyCT]

Using the software to tell when your mask is leaking soo much it is impacting your therapy.

I would avoid when or how to clean your humidifier.

New masks to try out are always good when they are FREE