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Sleep Apnea Survey!
#1
Exclaimation 
I found this survey for sleep apnea patients to share their sleep apnea experience and sleep apnea treatment experience with a group that will then take this data to the FDA, to inform them about sleep apnea patients' experiences.  

https://www.awakesleepapnea.org/

Here's an article that talks about the survey, but moreso about the summit that will happen with the FDA regarding sleep apnea (where the data from this survey will be shared on June 8th).

It's a very thorough survey, with a lot of boxes to add your own comments (which I did, quite verbosely!).  I made sure to emphasize what was working for me (APAP), what did not work for me (doctors dismissing my fatigue for the last 30 years), and what gets in my way (corruption in the sleep apnea "business" of sleep doctors being their own DMEs, etc.).

Lots of opportunity to speak your mind in this survey... or to just check the boxes.  But I hope "they" will listen to what they learn from this.  And what better group of people to complete this survey than we at Apnea Board?   like
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#2
Apropos,

Those sleep surveys everyone takes at their sleep doctor? They are used to weed out 'trouble' people. In case you have low AHI and good O2% sat. and you fill in you have terrible sleep, then you are then placed on the 'psychosomatic' list and then you end up either at a psychiatrist with pills or the lucky ones end up on this board.
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#3
This is different than that.

This is a survey of many people, and the data will be presented to the FDA to discuss sleep apnea and patients' experiences.

The survey we fill out for the sleep doctor is just exactly what you said. And yeah, I was a lucky one who 1) ended up here, and 2) insisted to my sleep "doctor" that I needed to at least TRY a titrated sleep study because doing nothing wasn't working for me.
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#4
Did the survey!
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#5
It is a confusing survey. There's few places where they ask "this is about your UNtreated sleep apnea" or "this is from BEFORE you began treatment."

I couldn't figure out how to answer.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#6
(05-16-2018, 06:30 PM)PaulaO2 Wrote: It is a confusing survey. There's few places where they ask "this is about your UNtreated sleep apnea" or "this is from BEFORE you began treatment."

I couldn't figure out how to answer.

I felt the same way. I figured out that for the most part, when asking about symptoms/experiences, it means pre-treatment.
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#7
Agree that the survey is confusing.

I also noted that two of the sponsors are Fisher & Paykel and Resmed. I'm not sure that they are champions of patient empowerment!
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
Thanks for sharing this. I just took the full survey. The event mentioned is close to home-ish. I'm considering attending.

Coffee

PS I've decided to register for attendance via the web.
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

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#9
I did it as well, and was also confused on a few of them
A man who may be asked in this century, what he did to make his life worthwhile, can respond with a good deal of pride and satisfaction, "I served in the United States Navy" ~ Pres. John F. Kennedy
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#10
I'll try it again and answer everything as if without machine.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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