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Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Thu Aug 08, 2019 5:44 pm
by Janknitz
jimbud wrote: ↑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
Curse of my life. Use a word with more than two syllables and people think you're "haughty"
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Thu Aug 08, 2019 6:45 pm
by Pugsy
Janknitz wrote: ↑Thu Aug 08, 2019 5:32 pm
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?
That's my thought...the technology is there in tiny computers for the home studies. Why not integrate it into the machine somehow and since they think they have asleep breathing already figured out with the smart ramp that goes to regular pressure if it thinks you are asleep...let them put their money where their mouth is. If it's accurate enough to suspend ramp...should be accurate enough to figure out some way of making it some sort of data point available with the software.
Unlikely it will ever happen unless the docs and DMEs want it though....we don't matter in what we might want.
But a girl can wish.
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Thu Aug 08, 2019 11:09 pm
by zoocrewphoto
I'm glad somebody from here can go. I would if it were only two hotel nights or less.
My big wishes would be to have full data in ALL machines. And teach the doctors how auto works. They need to know NOT to send people home with wide open settings. If the companies want people to use their machines, they need to make sure people can be successful with them.
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Thu Aug 08, 2019 11:46 pm
by palerider
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.
*I* want one that remembers from night to night, instead of starting fresh like a newborn baby *EVERY TIME YOU TURN IT ON*
And, heck, while we're at it, why not a wire running up to the mask and a couple diodes to monitor pulse and SpO2.?
A boy can dream.
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Fri Aug 09, 2019 12:26 am
by Grace~~~
palerider wrote: ↑Thu Aug 08, 2019 11:46 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.
*I* want one that remembers from night to night, instead of starting fresh like a newborn baby *EVERY TIME YOU TURN IT ON*
And, heck, while we're at it, why not a wire running up to the mask and a couple diodes to monitor pulse and SpO2.?
A boy can dream.
If the human body is at all malleable, and if it is possible for living humans to wake with creases, or marks, or swellings ... *I*'d like to see that physical trait capitalized upon (by the best and brightest of the plastic surgeons and medical artists) and a mask made that touched, soothed, tightened and massaged the face so that each morning you are more beautiful than when you fell asleep the night before ~~~ AND I'd love Pugsy and Paleriders intelligent and life saving features ...and also maybe an oxygen bleed option ... with maybe fruit scented oxygen? Because ... why not?
A believer can pray ~~~
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Fri Aug 09, 2019 7:17 am
by beautifuldreamer
I am looking forward to attending the seminar in September and will also be one of the patient panelists . . . I look forward to sharing and learning from those who will be attending
Also, Pugsy - your idea for your ideal machine sounds amazingly wonderful
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Fri Aug 09, 2019 9:03 am
by jimbud
If the human body is at all malleable, and if it is possible for living humans to wake with creases, or marks, or swellings ... *I*'d like to see that physical trait capitalized upon (by the best and brightest of the plastic surgeons and medical artists) and a mask made that touched, soothed, tightened and massaged the face so that each morning you are more beautiful than when you fell asleep the night before ~~~ AND I'd love Pugsy and Paleriders intelligent and life saving features ...and also maybe an oxygen bleed option ... with maybe fruit scented oxygen? Because ... why not?
A believer can pray ~~~
[/quote]
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Fri Aug 09, 2019 2:53 pm
by Janknitz
Pugsy wrote: ↑Thu Aug 08, 2019 6:45 pm
Janknitz wrote: ↑Thu Aug 08, 2019 5:32 pm
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?
That's my thought...the technology is there in tiny computers for the home studies. Why not integrate it into the machine somehow and since they think they have asleep breathing already figured out with the smart ramp that goes to regular pressure if it thinks you are asleep...let them put their money where their mouth is. If it's accurate enough to suspend ramp...should be accurate enough to figure out some way of making it some sort of data point available with the software.
Unlikely it will ever happen unless the docs and DMEs want it though....we don't matter in what we might want.
But a girl can wish.
I've never been a fan of ramp at all. The airflow doesn't bother me, it soothes and comforts me. When I use smart start, that couple of seconds it takes to get from 0 to 8 which is my starting pressure make me feel panicky like I'm not getting enough air. And even when that pressure is met, I put my hand in front of the CO2 vent to make SURE it's really on. Same with when I turn off the machine in the morning before I can rip the mask off (automatic stop takes too long and bugs me so I turn it off and try to take the mask off simultaneously). But I get why some people like ramp.
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Wed Sep 18, 2019 11:05 pm
by Janknitz
Beautiful Dreamer and I are here for the conference tomorrow. I got to meet her in person and she is indeed beautiful!
We are on different panels tomorrow so people will hear from us.
I’ve copied all your requests and will try to pass them on.
Anything else you want attendees to know (be nice!)?
Re: Share your sleep apnea story with the American Sleep Apnea Association (ASAA)
Posted: Wed Sep 18, 2019 11:51 pm
by chunkyfrog
I'm thinking of those nice, aloe impregnated socks;
and would like to see that happening with cushions and pillows.
Some people are reluctant to use cpap because of "negative cosmetic effects".
No harm in encouraging the vain to get treatment, too.