CPAPtalk.com

I have found in dealing w/"peers" that those that
want help will seek it out and those that are still
on the barge floating down denial, will not.
In the passion of finding relief from the pain and fatigue,
we all want to reach out. It's only natural for caring people.

In my passion to help, I started going to AWAKE meetings at
the hospital where I had my sleep study done. I went in educated
and loaded for bear. They were a total sham. It was painful for
me to look at the faces of these sleep deprived zombies, there
desperate for help, being fed the Company/DME line of BS.
At the end of the meeting, I wrote down cpaptalk.com on slips of
paper and passed them out as people were leaving.
One guy actually identified himself as having been at the meeting.
I think he made 4 posts. The AWAKE group was cancelled a few
months later. I'm guessing the patients, like me, are cut loose
to the DME's, just like I was. Very sad.

I have learned about people at my work that are cpapers.
Out of over a dozen, 2 will engage me concerning cpap.
None of them are regular users.

One morning I was sitting w/a customer and recognized the
mask marks still on his face. I asked. Yes he used it....
end of conversation. Whenever I work w/him I can see the fatigue.

There was a guy that started posting here that was opening
a private sleep lab. I actually went down and met him.
He gave me a tour of his new operation. It was very nice.
We talked about me starting a user help group in conjunction
w/the sleep lab. It never opened. I never heard from him again.

Good on you for wanting to help.
All the best.

People I deal with day to day have no assumptions about apnea cuz they have no reason to have any. I suppose if they did, it would be because they too had OSA.

What is the purpose of your proposed workshops?

Stormynights wrote:I usually don't tell anyone anymore except very close friends and close family. I think non hoseheads just don't get it. If I see someone having problems I might talk to them.

What were some of the things that you either heard or experienced that caused you to realize that they didn't get it?

See my post "what my boss said". I have a colleague at work who was diagnosed right after me I've been mentoring her through as I work through the challenges first.

kaiasgram wrote:Some of the assumptions I've encountered:

SA is just snoring.
SA is not serious.
SA only affects you at night.
CPAP is an easy fix and not a big deal.

But I've found that it's not so much what people assume, it's what they simply don't know that can make things challenging for us with our friends, coworkers, etc.

Thank you, Kaisgram! I think you're right - This absolutely one of those 'you don't know what you really don't know." things for most people. I see little snippets of commercials here and there about sleep apnea - but nothing that really tells what is like to live with it. . . just that you need this machine and that mask. . .and it isn't sexy.

I shared my use of cpap with everyone. When I first got it, within two weeks I started getting "Wow you are looking good these days" and "You really caught that issue quickly". When I mentioned what I was doing, about 50% of the time people would say "Oh yes, my (father,uncle, aunt, cousin, partner.....) uses that". I lived in a 12 unit apartment complex at the time, there were 4 of us using cpap machines - recognized by the strap marks during early morning dog walks. We exchanged tips and links. Last week at my knitting group the subject came up, out of the 4 of us there , 2 of us were using cpap and one had a husband on it.

Cereal Killer wrote:

kaiasgram wrote: SA is just snoring.
SA is not serious.
SA only affects you at night.
CPAP is an easy fix and not a big deal.

Let them think it. Their thoughts won't change my behavior or how I take care of myself.

I'm pretty sure the vast majority of the people here do just that. I know I do.

But think of this: Date rape, incest, domestic violence and child abuse were all unspoken things that no one addressed fifty years ago. Now? People educate, people address, and people are better informed about these issues, and because of this more people know what to look for, know how to report, know that they SHOULD report.

We know more about breast cancer than we did even five years ago. And they are bordering on a cure.

We know A LOT about HIV, and they are bordering on a cure.

We can let people think what they want to think. . .but if we do, then we have no one but ourselves to blame for the lack of information and support that's out there. By not addressing it, by informing, by making people aware, we're sending the silent message that we're just not important enough to fight for.

So, hopefully getting some support and education going will do some good - but misnomers can't be addressed unless they are recognized and understood.

YogaKitty wrote:Well, my mother immediately told me it "was a racket" basically that sleep studies are just a new fad, the centers are popping up everywhere, doctors are sending everyone to get a study, and of course the results will be that I have OSA because it's all a money making scheme.


BTW, I was diagnosed last summer, my brother was diagnosed this winter, and I'm pretty sure my mom and dad have OSA too. But it's not genetics, "its a racket"

I have a friend that has gone this route with me. It's very difficult to let her know that this is something that is saving my life - because she doesn't understand the need for the medicine.

quietmorning wrote:

Stormynights wrote:I usually don't tell anyone anymore except very close friends and close family. I think non hoseheads just don't get it. If I see someone having problems I might talk to them.

What were some of the things that you either heard or experienced that caused you to realize that they didn't get it?

I can't say there is anything in particular. You just know.

I went on a weekend basket weaver's weekend workshop with a friend and took my machine. During the first night I took the mask off in my sleep. The next day she said she got scared because I stopped breathing and was getting ready to check on me when I woke up gasped and put the mask back on. I told her that this was sleep apnea and why I had to use the machine. She acted very surprised and said, "then you really do have sleep apnea". Like I just made it up and carried an extra bag just for fun. Most people just don't get it.

I just don't talk to my mom about it. But I think she decided I might need it when she found out my overnight oxygen levels without cpap. She has COPD and heart issues so she is very aware of oxygen issues.

SleepingUgly wrote:

quietmorning wrote:The reason I'm asking is that I'd like to start putting together workshops I can share with you that you can either take to your sleep clinics to hopefully have them implemented or for you to implement them yourselves.

I don't understand. Who is your target audience and what is your purpose with these workshops?

This is a layered purpose:
General Public - Sleep apnea awareness. No workshops - but a marketing campaign.
Support system - These will have workshops that can help the person with sleep apnea's family and friends learn how to be truly supportive of their loved one. PART of this is addressing misnomers and addressing denial.
The person newly diagnosed with sleep apnea - this would be a workshop teaching communication tools on how to deal with family and other peers who are not supportive.

I can write them, I used to do this for a living - the writing is the hard part. ANYONE can facilitate a workshop or an informational meeting. But it's a step toward outreach.

LSAT wrote:

SleepingUgly wrote:

quietmorning wrote:The reason I'm asking is that I'd like to start putting together workshops I can share with you that you can either take to your sleep clinics to hopefully have them implemented or for you to implement them yourselves.

I don't understand. Who is your target audience and what is your purpose with these workshops?

Workshops????? Who cares what other's think?

oviously you do, or you wouldn't have those question marks there.

It's not about what others think, it's about support. And fortunately or unfortunately - there are people in this world who DO CARE. Whether we like it or not.

Why not write a book????

BlackSpinner wrote:

LSAT wrote: Workshops????? Who cares what other's think?

I agree however many people allow themselves to be trampled by other peoples opinions. This would give them a club to use to beat them off.

Yep. Thanks, BlackSpinner!

YogaKitty wrote:I think maybe it is "worksheets" instead of "workshops" But that is just my guess from the context of the OP

It's workshops, or support meetings with a focus. It can work in several different ways - workshops entails participation from audience - making it learning and user friendly.