myapnea dot org

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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49er
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Re: myapnea dot org

Post by 49er » Tue Nov 25, 2014 11:04 am

Drowsy Dancer wrote:Interestingly, there's a moderator there now with a download link to SleepyHead in his/her signature line.
Thank you very much for pulling that post Asleep at the Wheel wrote regarding changing pressures DD. I was ready to respond with a few choice words when I noticed you had posted this about the moderator having the link to SleepyHead. Maybe they really are serious about changing things. Thanks for letting us know about this.

49er

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Julie
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Re: myapnea dot org

Post by Julie » Tue Nov 25, 2014 11:10 am

And maybe their adherence to the law doesn't extend to taking software without asking.

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Drowsy Dancer
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Re: myapnea dot org

Post by Drowsy Dancer » Tue Nov 25, 2014 11:11 am

There is a new sheriff in town, it would appear:

http://www.apneasupport.org/remstar-aut ... 35484.html

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Drowsy Dancer
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Re: myapnea dot org

Post by Drowsy Dancer » Tue Nov 25, 2014 11:16 am

Julie wrote:And maybe their adherence to the law doesn't extend to taking software without asking.
"A foolish consistency is the hobgoblin of little minds."

ETA: The above was intended to agree with the point Julie was making.

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Last edited by Drowsy Dancer on Tue Nov 25, 2014 5:04 pm, edited 1 time in total.
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49er
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Re: myapnea dot org

Post by 49er » Tue Nov 25, 2014 2:43 pm

I am now allowed on the apneasupport site forum after previously being banned. Very encouraging development.

49er

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cathyf
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Re: myapnea dot org

Post by cathyf » Tue Nov 25, 2014 4:03 pm

tan wrote: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.
I got to FOAD even before you, tan. ANYONE who uses the word "comply" to refer to what people do when they are UNCONSCIOUS is, quite simply, an asshole.

I got my PA to write a prescription for the exact machine I wanted by pointing out that "compliance" doesn't actually require that you be alive. So you put on your mask, turn on the machine, lie down, have a massive heart attack, and die. 12 hours later, when you don't show up for work and your co-workers get worried, the paramedics show up and your neighbor lets them in. The paramedics take the mask off (to start the futile cpr) and the machine goes auto-off. As they are zipping you into the body bag, your cpap machine uses the built-in modem to phone home. The software sends your dead self an email giving you a Gold Badge, because:
  • You left your mask on for the whole 12 hours. You couldn't take it off because you were dead.
  • You left the machine on for the whole 12 hours. You couldn't turn it off because you were dead.
  • Your mask fit was perfect for the whole 12 hours. It wasn't going to get jostled from movement because you were dead.
  • Your AHI was very low. That "apnea" was 11 hours and 55 minutes long, but it was only ONE, because you were dead.
Just remember, if they really do FOAD, being dead won't interfere with them being good little compliant patients.

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Julie
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Re: myapnea dot org

Post by Julie » Tue Nov 25, 2014 4:51 pm

Thank you so much DD, will return the sentiment some other time. Was that really necessary?

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Drowsy Dancer
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Re: myapnea dot org

Post by Drowsy Dancer » Tue Nov 25, 2014 5:03 pm

Julie wrote:Thank you so much DD, will return the sentiment some other time. Was that really necessary?
I'm sorry, I was agreeing with your point, not trying to be mean to you.

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Julie
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Re: myapnea dot org

Post by Julie » Tue Nov 25, 2014 5:53 pm

Oh! Ok, didn't get the agreeing part, but if so, then I sure agree with your post!

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msla
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Re: myapnea dot org

Post by msla » Tue Nov 25, 2014 7:59 pm

tan wrote: 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 am the OP and I only asked a question about the new (and improved??) ASAA effort. I am in no way connected with them. I remain skeptical.

My post was "What are your thoughts on this effort? https://myapnea.org/ I'm not looking to upset anyone, just curious."
Rolf

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chunkyfrog
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Re: myapnea dot org

Post by chunkyfrog » Tue Nov 25, 2014 8:08 pm

I expect many will choose to observe--at a comfortable distance.

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tan
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Re: myapnea dot org

Post by tan » Tue Nov 25, 2014 10:00 pm

msla wrote:
tan wrote: 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 am the OP and I only asked a question about the new (and improved??) ASAA effort. I am in no way connected with them. I remain skeptical.

My post was "What are your thoughts on this effort? https://myapnea.org/ I'm not looking to upset anyone, just curious."
Rolf
My apologies, I meant asleep@thewheel

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kaiasgram
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Re: myapnea dot org

Post by kaiasgram » Sat Nov 29, 2014 12:46 am

I tried submitting my research question idea on the myapnea.org website again and this time it went through and got posted. This is the question I posted:
Does educating sleep apnea patients about how to monitor and manage their treatment, including how to use and adjust their PAP machines, affect sleep apnea treatment outcomes (AHI, subjective reporting of symptoms, and compliance rates)?
I know some of us hate the word "compliance" but in the medical research world it's the right word to use.

You would have to register on the myapnea.org website to vote for research questions and I know most don't want to bother. To be honest I don't think much will come from the whole enterprise, but since it didn't cost me anything except a few minutes of my time I decided to go for it.

Also, if you're registered on the ASAA forum and haven't been there for a while, you might want to revisit -- there does seem to be a little bit of forward movement there now. A little. But it's better than no forward movement.

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49er
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Re: myapnea dot org

Post by 49er » Sat Nov 29, 2014 2:05 am

kaiasgram wrote:I tried submitting my research question idea on the myapnea.org website again and this time it went through and got posted. This is the question I posted:
Does educating sleep apnea patients about how to monitor and manage their treatment, including how to use and adjust their PAP machines, affect sleep apnea treatment outcomes (AHI, subjective reporting of symptoms, and compliance rates)?
I know some of us hate the word "compliance" but in the medical research world it's the right word to use.

You would have to register on the myapnea.org website to vote for research questions and I know most don't want to bother. To be honest I don't think much will come from the whole enterprise, but since it didn't cost me anything except a few minutes of my time I decided to go for it.

Also, if you're registered on the ASAA forum and haven't been there for a while, you might want to revisit -- there does seem to be a little bit of forward movement there now. A little. But it's better than no forward movement.
Thanks for updating us Kaisgram. I will make sure I get over there to vote for your question.

Regarding the ASAA forum, I am very encouraged they reinstated my membership. Of course, I am still quite reluctant to post because frankly, it is draining and tiring having to think of all the rules I need to follow such as whether I can tell a poster to google cpaptalk.com or if that is in violation. But hopefully, the positive trend will continue.

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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 3:38 am

kaiasgram wrote:This is the question I posted:
Does educating sleep apnea patients about how to monitor and manage their treatment, including how to use and adjust their PAP machines, affect sleep apnea treatment outcomes (AHI, subjective reporting of symptoms, and compliance rates)?
http://www.atsjournals.org/doi/full/10. ... 0204-360OC
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