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FYI Article on Sleepyhead showed up on Apple News
#1
FYI Article on Sleepyhead showed up on Apple News
'I’m Possibly Alive Because It Exists:' Why Sleep Apnea Patients Rely on a CPAP Machine Hacker - VICE

https://apple.news/A0PbCnCKeQCeL-08AJ56IlA 
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#2
RE: FYI Article on Sleepyhead showed up on Apple News
Originally from Vice news.  I cannot find it on their web site.
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#3
RE: FYI Article on Sleepyhead showed up on Apple News
Thank you for posting this. Informative article.
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.

Wiki Info for Beginners
Sleepyhead Chart Organization
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#4
RE: FYI Article on Sleepyhead showed up on Apple News
Hi there, thank you for posting this. I'm the author of the article; here's a link to the original:

https://motherboard.vice.com/en_us/artic...ine-hacker
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#5
RE: FYI Article on Sleepyhead showed up on Apple News
Good article! Thanks to jkoebler for writing it, and thanks to Sam Spade's colleague for calling attention to it.

I was surprised to learn from the "Advamed" anti-patient-rights lobbying group that whenever I read the data from my medical devices and adjust the settings of the devices, I could be accelerating battery drain! OMG! I'm terrified. I guess because of that, I'll have to leave everything to the doctors and Advamed from now on.

(Jeez, if that's the best they can come up with, then their entire anti-patient case is obviously super-lame, wouldn't you say? As for supposedly putting patients' health and lives at risk, I don't buy that either.)

"Leave it all to us! You'll never know what hit you." (Dr. Graham Chapman)
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#6
RE: FYI Article on Sleepyhead showed up on Apple News
Hi Jkoebler,
Well written article.  Thank you.  I don't have time to read every response, but I hope many will reinforce what you described hearing, that doctors are pretty ill equipped to deal with the technical nature of optimizing the performance of these machines, and in my brief personal experience, it is nearly impossible to get competent help from any source, including my doctors, my device provider, the sleep lab folks, or my insurance company.  Finding Mark, and SleepyHead, has been a godsend.  I believe I was actually prescribed the wrong machine, if you can believe that, and my symptoms were initially horrible, basically no improvement to my nearly 30 apnea events an hour.  On my machine, I basically stop breathing for sometimes over a full minute, 30 times an hour.  Can you imagine the damage to my organs and tissues, as my blood oxygen levels basically "go away", repeatedly, all night long?  The community here in Apnea Board, using SleepyHead, has been incredibly supportive, engaged, actively training me to learn what I need to know to correct my settings, and, I'm hopeful, give me the knowledge I need to get the machine that will best address my condition.  I love my doctors, honestly, I do.  But they are untrained, unskilled, and patently unable to take this on, and have admitted as much.  I'm now searching out a doctor who wil be able to keep up with me, with the knowledge I am gaining. We are not fooling about all of this.  We are mostly alone, left to "tune" ourselves, as each individual health scenario and pathology set, is so varied.  Imagine trying to tune every kind, vintage, and condition of motor vehicle ever produced, and still on the road today.  No "one carburetor", or setting, could possibly work for all.  With a powerful diagnostic tool like SleepyHead, I have a fighting chance.  My intentions are pure, to help myself survive this punishing malady.  And I hope to bring my doctors along with me, so that they can be better equipped to help the next hapless victim.

With Kind Regards,
JP
FE350
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