myapnea dot org

[kaiasgram]

I have an update for those who have been following this thread.

Ed Grandi is now the former executive director of the ASAA.

Linda and Daniel are no longer our moderators. Yes we are open to have this exact conversation about patient self management. It has taken the diabetes community a long time to get diabetes education into their process.

Adam's comments here were in reference to my post earlier in this thread about trying to start a conversation about patient self management on the ASAA forum last year. That thread was locked down just a day after it started by moderators Linda and Daniel. This evening I discovered that the thread has been unlocked: http://www.apneasupport.org/post214943.html#p214943 .

Adam, if you had a part in getting the thread unlocked I thank you. It is important that we be able to discuss and debate the merits of patients learning how to better manage their own PAP therapy, even if the ASAA board still prohibits direct suggestions or advice on how to make pressure adjustments, etc.

I hope this development represents a small step in the direction of progress. When patients have knowledge, competence and at least a degree of personal responsibility/autonomy, they are much more likely to be successful with PAP therapy. We see it daily here.

Regarding the research question I tried to submit at the myapnea.org website -- I received an email from Darrel Drobnich, Project Director, Sleep Apnea Patient Centered Outcomes Network saying that there have been some website/server issues but that he'd see to it that my question gets posted. I'll watch for it.

[49er]

Thanks for the update Kaiasgram. This sounds encouraging.

49er

I have an update for those who have been following this thread.

Ed Grandi is now the former executive director of the ASAA.

Linda and Daniel are no longer our moderators. Yes we are open to have this exact conversation about patient self management. It has taken the diabetes community a long time to get diabetes education into their process.

Adam's comments here were in reference to my post earlier in this thread about trying to start a conversation about patient self management on the ASAA forum last year. That thread was locked down just a day after it started by moderators Linda and Daniel. This evening I discovered that the thread has been unlocked: http://www.apneasupport.org/post214943.html#p214943 .

Adam, if you had a part in getting the thread unlocked I thank you. It is important that we be able to discuss and debate the merits of patients learning how to better manage their own PAP therapy, even if the ASAA board still prohibits direct suggestions or advise on how to make pressure adjustments, etc.

I hope this development represents a small step in the direction of progress. When patients have knowledge, competence and at least a degree of personal responsibility/autonomy, they are much more likely to be successful with PAP therapy. We see it daily here.

Regarding the research question I tried to submit at the myapnea.org website -- I received an email from Darrel Drobnich, Project Director, Sleep Apnea Patient Centered Outcomes Network saying that there have been some website/server issues but that he'd see to it that my question gets posted. I'll watch for it.

[Sludge]

this one? http://www.aasmnet.org/JCSM/Articles/020319.pdf

viewtopic.php?f=1&t=92294&p=850914&hili ... di#p850914

I wholeheartedly agree no one should be sent out the door with an APAP set between 4-20, that is just ludicrous and is a recipe for failure.

Once portable testing was allowed, the insurers said "Well, we got a diagnosis, so why do we need to go to a Sleep Center for titration with all them "Smart Machines" out there?"

Consequently, what is

...ludicrous and is a recipe for failure...

is now the SOP for many insurers, with more jumping on the bandwagon every day.

Then on top of that, when the DLs show compliance to be poor, the CPAP Police come and snatch the machine back.

(BTW, "IMHO" the portable testing initiative was largely pushed through by the ENT groups, who wanted fast results so they could get their patients into surgery before they changed their mind--- at the time, LAUPPPs and other invasive procedures touted as the quick and easy).

[Sludge]

Adam's comments here were in reference to my post earlier in this thread about trying to start a conversation about patient self management on the ASAA forum last year. That thread was locked down just a day after it started by moderators Linda and Daniel. This evening I discovered that the thread has been unlocked: http://www.apneasupport.org/post214943.html#p214943

So that means they're allowing "dial wingin'" now?

[Sludge]

When patients have knowledge, competence and at least a degree of personal responsibility/autonomy, they are much more likely to be successful with PAP therapy. We see it daily here.

But how many, really? 10 a month?

There are millions undiagnosed, hundreds of thousands who tried and failed, an unknown number on inadequate or inappropriate therapy...

"IMHO", the plan cannot be hoping that patients will somehow navigate to a self-help board and get the tools and help they need for successful treatment.

[kaiasgram]

Adam's comments here were in reference to my post earlier in this thread about trying to start a conversation about patient self management on the ASAA forum last year. That thread was locked down just a day after it started by moderators Linda and Daniel. This evening I discovered that the thread has been unlocked: http://www.apneasupport.org/post214943.html#p214943

So that means they're allowing "dial wingin'" now?

lol, I don't think so. In that thread no one was posting advice or explaining how to change pressures. We were discussing the idea that patients could be taught how to monitor and adjust pressure in responsible and informed ways, IOW we could/should have a more active role in our own therapy if we choose to. And that some doctors are beginning to recognize this.

[kaiasgram]

When patients have knowledge, competence and at least a degree of personal responsibility/autonomy, they are much more likely to be successful with PAP therapy. We see it daily here.

But how many, really? 10 a month?

There are millions undiagnosed, hundreds of thousands who tried and failed, an unknown number on inadequate or inappropriate therapy...

"IMHO", the plan cannot be hoping that patients will somehow navigate to a self-help board and get the tools and help they need for successful treatment.

Agreed. Better patient education and involvement in the treatment should be mainstream. Then maybe fewer of those hundreds of thousands would be failing because of inadequate or inappropriate therapy. imho!

[Drowsy Dancer]

Adam's comments here were in reference to my post earlier in this thread about trying to start a conversation about patient self management on the ASAA forum last year. That thread was locked down just a day after it started by moderators Linda and Daniel. This evening I discovered that the thread has been unlocked: http://www.apneasupport.org/post214943.html#p214943

So that means they're allowing "dial wingin'" now?

lol, I don't think so. In that thread no one was posting advice or explaining how to change pressures. We were discussing the idea that patients could be taught how to monitor and adjust pressure in responsible and informed ways, IOW we could/should have a more active role in our own therapy if we choose to. And that some doctors are beginning to recognize this.

Boy, that Daniel is just a ray of effing sunshine, isn't he? "Disrespecting" the ASAA? Is it my mother?

[palerider]

Boy, that Daniel is just a ray of effing sunshine, isn't he? "Disrespecting" the ASAA? Is it my mother?

didn't you get the commandment? Honor thy mother and thy father and thy ASAA"

[49er]

Boy, that Daniel is just a ray of effing sunshine, isn't he? "Disrespecting" the ASAA? Is it my mother?

As one who had run ins with him before I was banned from the board, I learned that very quickly.

49er

[tan]

I don't what to say... after being diagnosed with OSA and given an APAP with open settings (4-20), which didn't adequately work, my insurance company refused a titration study, stating that a home sleep test will be sufficient for the purpose...hmmmm.... On the other hand, the OP and his apnea site suggests that the changing settings by the users is illegal... hmmmm.... I say someone should FOAD.

[Drowsy Dancer]

Boy, that Daniel is just a ray of effing sunshine, isn't he? "Disrespecting" the ASAA? Is it my mother?

didn't you get the commandment? Honor thy mother and thy father and thy ASAA"

There it is, right after "Thou shalt not take the name of Apria in vain." How did I miss that?

[49er]

I don't what to say... after being diagnosed with OSA and given an APAP with open settings (4-20), which didn't adequately work, my insurance company refused a titration study, stating that a home sleep test will be sufficient for the purpose...hmmmm.... On the other hand, the OP and his apnea site suggests that the changing settings by the users is illegal... hmmmm.... I say someone should FOAD.

Tan,

I definitely understand your anger.

What was frustrating about ASAA and the forum is essentially, they had so many rules that it was possible to post anything that would help someone on their site. It seems the only thing you could say was "See your doctor."

Well, what if your doctor was horsebleep even after trying several of them? Hmm, maybe someone had a recommendation for someone in your area. Oh, wait a minute, doing that wasn't allowed.

And even worse, if you were uninsured and didn't know about this site, you were essentially screwed. So many times, I would PM people this site because I got tired of people not getting the help they needed.

Regarding changing setting being illegal, I think Adam finally admitted there wasn't a a law. Sorry, I don't feel like finding the specific post but it just angers me greatly their dishonesty about this in the past.

But moving forward, I am encouraged at what Kaiasgram has reported and hopefully that is an indication that things will change. Only time will tell.

49er

[Drowsy Dancer]

I am a patient first and foremost. I am not an attorney therefore I am not qualified to recite code and law nor would I even know where to look. My comments were taken out of context. I was just trying to express what the sleep doctors POV is and how what they perceive to be right or wrong.

Here it is, 49er.

[Drowsy Dancer]

Interestingly, there's a moderator there now with a download link to SleepyHead in his/her signature line.