Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

palerider · Post by **palerider** » Fri Aug 02, 2019 9:23 pm

afronative wrote: ↑
Fri Aug 02, 2019 11:23 am
Why all the negativity? Someone posted an invite. You are not familiar with ASAA it takes one minute to look up the organization and find out that it is a effective patient-centered advocacy group.

Why do twits feel the need to create a new account just to be jerks?

zoocrewphoto · Post by **zoocrewphoto** » Fri Aug 02, 2019 9:26 pm

chunkyfrog wrote: ↑
Fri Aug 02, 2019 9:12 pm

chunkyfrog wrote: ↑
Thu Aug 01, 2019 8:30 am
. . .
When patients are having difficulties, who is available to help?
This forum is active 24/7, when patients are wrestling with the mask,
machine, and a myriad of other problems.
How is it that all those professionals are busy stuffing their pockets by day---
are never in the office when they are NEEDED?
The entire issue is that apnea is a SLEEP disorder, and those paid to help-----DO NOT.
They have closed the offices and gone home.
Most of us are here because our medical teams have FAILED us---and quite shamefully.
Over and over, we have seen that this is too often standard procedure.
And yet; only excuses . . .

When my mom got her last machine, she was given a number to call, and was told that somebody was always on call, and could deliver a loaner machine on weekends and nights if there was an event. We have never tested it, so no idea if they would really help or not. I do have a spare machine, so the only time we had a problem, I switched out the parts and figured out the problem a couple days later.

I am grateful to this forum for helping me out in the beginning. I was one of the lucky ones with some success right away due to a good sleep study and titration (with an excellent tech). But part of what helped me so much was the mask fitting issues, finding smaller headgear, and tracking my data. Those are all due to this forum. And since this forum is global (and some of us are night owls) , we do have people here pretty much around the clock. Helping somebody find a solution to a leaky mask, a machine acting up, etc is really a good feeling. I also learn more as I read the answers to other people's questions. And that helps me to help friends and family locally as well as maybe answering a question in the middle of the night when the experts may be asleep.

I would be interested in attending the event being promoted if it were nearby. I do wish we could view any seminars online or at least learn more about what they are working on. Especially in terms of educating the public about sleep apnea and how to help more people be successful.

batJDGman · Post by **batJDGman** » Sat Aug 03, 2019 7:26 am

So weird the thin skin of some, didn't think anything said in this thread was that harsh. But I'm new, personally I agree with another person I find it weird someone wanting to be called mother lol but I do wish there was help so I'm glad I found this forum.

palerider · Post by **palerider** » Sat Aug 03, 2019 3:02 pm

For a while, I was a moderator on the old ASAA forum.
When I started, the forum was decidedly ANTI PATIENT.
The forum was all about "BE A GOOD PATIENT, BEHAVE, OBEY YOUR DOCTOR".

Many people from this forum had been banned because they dared to suggest doing things like looking at the machine's data, or being an empowered patient.

During the time I was there, just before the forum collapsed, I did see some enlightenment starting to creep in, and I unbanned a number of the good people here.

Perhaps the ASAA has become less of a mouthpiece of industry and more of a patient advocacy and empowerment movement.

I don't know.

zonker · Post by **zonker** » Sat Aug 03, 2019 4:44 pm

palerider wrote: ↑
Fri Aug 02, 2019 9:23 pm

afronative wrote: ↑
Fri Aug 02, 2019 11:23 am
Why all the negativity? Someone posted an invite. You are not familiar with ASAA it takes one minute to look up the organization and find out that it is a effective patient-centered advocacy group.
Why do twits feel the need to create a new account just to be jerks?

concern trolls are concerned.

chunkyfrog · Post by **chunkyfrog** » Mon Aug 05, 2019 10:39 pm

Fool me once--shame on you.
Fool me twice--shame on me

Been there; done that.
They tried to sell me the shirt.
I told them I'd rather go naked.

Goofproof · Post by **Goofproof** » Tue Aug 06, 2019 8:31 am

chunkyfrog wrote: ↑
Mon Aug 05, 2019 10:39 pm
Fool me once--shame on you.
Fool me twice--shame on me

Been there; done that.
They tried to sell me the shirt.
I told them I'd rather go naked.

Didn't have one in Green and Waterproof?

Only Wash and Wear! Jim

Janknitz · Post by **Janknitz** » Tue Aug 06, 2019 2:35 pm

Perhaps the ASAA has become less of a mouthpiece of industry and more of a patient advocacy and empowerment movement.

I volunteered for the patient panel and this is what they are telling me--it's all about patient empowerment and the industry has been kicked to the curb. I think we'll have to see. Again, I'm not going in with guns blazing, I'm going in with an open mind. Even if the industry is involved, it doesn't mean that the patient advocacy arm can't be helpful--the question is how much of a thumb does industry exert on the process?

I can read their community forum but cannot join--probably due to the old banning for the crime of accidentally posting a link to my own non-commercial blog which had subversive info on how to deal with DME's and create your own hose management device. I don't see admonishments in their rules about posting links or talking about accessing data anymore. OTOH, I don't see much participation or anyone posting links there. So it's unclear what the current moderation is like.

There are very few newer posts. In the most active sub forum ("Sleep Apnea") there is one active thread that has been posted on today, and the next most recent thread was last posted in 15 days ago. Some of the subtopics were last updated in 2015. I guess that tells you something . . .

As someone who was done with ASAA a long time ago, I don't think it's necessary to still be hostile if it truly has changed. They have the opportunity to be a "kinder and gentler" forum for newbies who can't handle the Wild West here, newbies who need support without a side of snide (yes I'm looking YOU if you think I'm talking about you). That takes a little more moderation than we have here, but the heavy hand of the past was clearly not a successful model for them. Maybe they really are trying to thread the needle.

palerider · Post by **palerider** » Tue Aug 06, 2019 11:47 pm

Janknitz wrote: ↑
Tue Aug 06, 2019 2:35 pm
I can read their community forum but cannot join--probably due to the old banning for the crime of accidentally posting a link to my own non-commercial blog which had subversive info on how to deal with DME's and create your own hose management device.

I'm pretty sure you were one of the people I unbanned on the old forum. you, jedimark.. a few other *very knowledgeable* people that had been banned for the crime of wanting help people help themselves.

Janknitz wrote: ↑
Tue Aug 06, 2019 2:35 pm
As someone who was done with ASAA a long time ago, I don't think it's necessary to still be hostile if it truly has changed.

Absolutely. They *were* loosening up at the time when the old forum went down. I haven't been involved since then. (and, no, I didn't destroy it from the inside

)

JayDee · Post by **JayDee** » Wed Aug 07, 2019 6:26 am

I wouldn't be too concerned about attending -- what are they going to do? Hypnotize us (ahem) "weak-minded" patients and/or trick us into forgetting all we know about managing our own PAP therapy? I had the impression we were a bit sturdier than that and could withstand the marketing onslaught when surrounded by vendors at a industry trade show or whatever this is.

However, Sept 19th is "International Talk Like A Pirate" day and I already have plans. Also, I'm in Atlanta and this event is way over at the far edge of the world, sooo...

All kidding aside, I really hope someone from here goes who can provide a straightforward account. Might be some good stuff; might be a complete waste of time. But there's only one sure way to find out. As for myself, this is pertinent to my interests and I'd love to go just to hear what they have to say, look around at whatever the vendors might have on display and see if there's any swag to snag.

Lord knows I've wasted my time in far worse ways. I wish they did something like this close enough where I could attend an event.
-JD

Pugsy · Post by **Pugsy** » Wed Aug 07, 2019 6:45 am

JayDee wrote: ↑
Wed Aug 07, 2019 6:26 am
I wouldn't be too concerned about attending -- what are they going to do? Hypnotize us (ahem) "weak-minded" patients and/or trick us into forgetting all we know about managing our own PAP therapy? I had the impression we were a bit sturdier than that and could withstand the marketing onslaught when surrounded by vendors at a industry trade show or whatever this is.

You know that was where I was going with my comments but didn't say it as well as you did.

I am sort of amazed at all the negativity myself. I thought folks here could understand how and why these sort of events happen and deal with it instead of running out and buying up all the aluminum foil for some more tin hats.
Oh well....I learn something new every day here.

I would go if it wasn't half way across the country for me. I would want to give an earful about my dream machine that I want them to develop for me. I think I have a great idea and want to know if anyone is working on something like it already. I would be willing to actually talk to a rep from the evil big name companies to be heard. Yes...I would be willing to break bread with the enemy to maybe get what I want. They can have their motives for throwing the party but I get to have my motives for attending the party.
Alas...I can't even manage 4 hours away from my place right now due to other obligations.

Janknitz · Post by **Janknitz** » Thu Aug 08, 2019 3:49 pm

Pugsy wrote: ↑
Wed Aug 07, 2019 6:45 am

JayDee wrote: ↑
Wed Aug 07, 2019 6:26 am
I wouldn't be too concerned about attending -- what are they going to do? Hypnotize us (ahem) "weak-minded" patients and/or trick us into forgetting all we know about managing our own PAP therapy? I had the impression we were a bit sturdier than that and could withstand the marketing onslaught when surrounded by vendors at a industry trade show or whatever this is.
You know that was where I was going with my comments but didn't say it as well as you did.

I am sort of amazed at all the negativity myself. I thought folks here could understand how and why these sort of events happen and deal with it instead of running out and buying up all the aluminum foil for some more tin hats.
Oh well....I learn something new every day here.

I would go if it wasn't half way across the country for me. I would want to give an earful about my dream machine that I want them to develop for me. I think I have a great idea and want to know if anyone is working on something like it already. I would be willing to actually talk to a rep from the evil big name companies to be heard. Yes...I would be willing to break bread with the enemy to maybe get what I want. They can have their motives for throwing the party but I get to have my motives for attending the party.
Alas...I can't even manage 4 hours away from my place right now due to other obligations.

Pugsy,

I'm happy to convey your dream machine request. I suspect the vendors on the showroom floor are the company marketing teams and have little if anything to do with development, but I'm going to be on one of the panels and they are not "patient panels" or "industry panels" but a combination of both, so I will have an industry ear in a public forum.

Supposedly in the next week or two, the ASAA is going to ask people to fill out an online survey to help them understand what our concerns are and how the organization can better advocate for people with sleep apnea. I see all the skepticism in this forum that any cooperation with the ASAA will turn us in to "industry shills", but perhaps that's NOT the case? Or maybe it is but might bring us some benefit too? When I spoke to the coordinators last week, they expressed their intention that this is NOT about industry but is IS about empowerment of people with sleep apnea. The survey might be a way to get your voice heard.

In any case, you can't expect the industry to hear us and make changes unless we express our wishes and concerns to them. This conference might be the right forum to get them to hear us. If there's something you want me to convey (problem or idea for improvement), let me know here or in a PM. Please be brief, constructive, and save your vituperation (noun meaning "bitter and abusive language") for elsewhere since I'm not the ASAA or the industry.

Pugsy · Post by **Pugsy** » Thu Aug 08, 2019 4:13 pm

Jan...I want a machine that will do sleep stages.
Asking for a lot I know but the technology is getting there where devices can come close to sleep stages without EEG leads.
Might not be perfect but its getting there.
Both ResMed and Respironics already offer the smart ramp that is supposed to be able to sense when we are asleep.
Why not take it further and give us data that tells us when we weren't breathing like we do when sleeping.
So that we can more easily remove the SWJ stuff....or maybe so the machine won't flag SWJ stuff if the breathing doesn't match up with asleep breathing.

I see so many people fighting high AHIs and trying all sorts of stuff (pressure changes, etc) and not getting any results because the problem isn't that they need more pressure or the apneas...the problem is they have crappy sleep from something else and we all know that the machine can't fix crappy sleep caused by anything other than apneas.
I think it would ease people's mind and maybe get them so they aren't so damn fixated on the AHI and get them to start looking at the sleep quality itself.

Right now these machines treat awake flagged stuff just like asleep flagged stuff and they respond as such. I have seen it with my own reports. Pressure increases because of a couple of OAs that are clearly SWJ.

That's my dream machine.

jimbud · Post by **jimbud** » Thu Aug 08, 2019 4:41 pm

Janknitz wrote: ↑
Thu Aug 08, 2019 3:49 pm

Pugsy wrote: ↑
Wed Aug 07, 2019 6:45 am

Please be brief, constructive, and save your vituperation (noun meaning "bitter and abusive language") for elsewhere since I'm not the ASAA or the industry.
Haughty (adjective meaning "well you are familiar with the meaning").
JPB

Janknitz · Post by **Janknitz** » Thu Aug 08, 2019 5:32 pm

Pugsy wrote: ↑
Thu Aug 08, 2019 4:13 pm
Jan...I want a machine that will do sleep stages.
Asking for a lot I know but the technology is getting there where devices can come close to sleep stages without EEG leads.
Might not be perfect but its getting there.
Both ResMed and Respironics already offer the smart ramp that is supposed to be able to sense when we are asleep.
Why not take it further and give us data that tells us when we weren't breathing like we do when sleeping.
So that we can more easily remove the SWJ stuff....or maybe so the machine won't flag SWJ stuff if the breathing doesn't match up with asleep breathing.

I see so many people fighting high AHIs and trying all sorts of stuff (pressure changes, etc) and not getting any results because the problem isn't that they need more pressure or the apneas...the problem is they have crappy sleep from something else and we all know that the machine can't fix crappy sleep caused by anything other than apneas.
I think it would ease people's mind and maybe get them so they aren't so damn fixated on the AHI and get them to start looking at the sleep quality itself.

Right now these machines treat awake flagged stuff just like asleep flagged stuff and they respond as such. I have seen it with my own reports. Pressure increases because of a couple of OAs that are clearly SWJ.

That's my dream machine.

Interesting. The Watch Pat does it with a combo of data (capillary pressure, pulse, etc.). Would the machines have to have something like that (maybe a finger probe) to accomplish that?

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)