CPAP User's Bill of Rights

We need a CPAP User's Bill of Rights. We are going to be tethered to this machine for 1/3 of the rest of our lives. We need some measure of control unless our 'professionals' are willing to communicate with us and tweak our equipment on a weekly or even daily basis.
Any suggestions:?

YOU do have the right not to use it...

You have the right to choice, this is to include, doctors, dme's, machines, masks...........

You have the right to information
You have the right to adjust settings
You are an individual and have the right to dignity and respect

start a cpap dating site.

Sillyme wrote:We need a CPAP User's Bill of Rights. We are going to be tethered to this machine for 1/3 of the rest of our lives. We need some measure of control unless our 'professionals' are willing to communicate with us and tweak our equipment on a weekly or even daily basis.
Any suggestions:?

I think you mean...THE REST OF OUR LIVES

LSAT wrote:

Sillyme wrote:We need a CPAP User's Bill of Rights. We are going to be tethered to this machine for 1/3 of the rest of our lives. We need some measure of control unless our 'professionals' are willing to communicate with us and tweak our equipment on a weekly or even daily basis.
Any suggestions:?

I think you mean...THE REST OF OUR LIVES

Nope I think Sillyme was right. 1/3 is about right...unless you wear yours 24/7.

Zeke351

You have the right to a FULL copy of your polysomnography, not just the doctor's interpretation of it.

--and if it is 20 or 30 pages, they can't charge you excessively for it!

Sillyme wrote:We need a CPAP User's Bill of Rights. We are going to be tethered to this machine for 1/3 of the rest of our lives. We need some measure of control unless our 'professionals' are willing to communicate with us and tweak our equipment on a weekly or even daily basis.
Any suggestions:?

This subject has come up again and again over the years. In fact, there were even some folks who were looking into forming a "CPAP Users Group International" (CUGI). However, there ended up being too many obstacles to getting it off the ground ("money" for one thing). Another problem was determining how to get the information to the users BEFORE they actually needed it. After all, most users are blindsided by all of the hassle with the insurance, doctors, DMEs and equipment going into this.
Don't ask me how I know all this stuff........

Anyway, if you do a forum search on "Bill of Rights", you'll find lots and lots of stuff. Here's one with a humorous slant from way back when.

viewtopic/t55826/viewtopic.php?f=1&t=56 ... hts#p50441


Den

LSAT wrote:

Sillyme wrote:We need a CPAP User's Bill of Rights. We are going to be tethered to this machine for 1/3 of the rest of our lives. We need some measure of control unless our 'professionals' are willing to communicate with us and tweak our equipment on a weekly or even daily basis.
Any suggestions:?

I think you mean...THE REST OF OUR LIVES

Huh? Where did you here this from, that there is no cure for sleep apnea??

If you seriously think that OSA is an incurable disease for _everyone_, then why is it that my office mate
was diagnosed with severe OSA, was given option to lose weight and exercise, or else be on the mask the rest of his life?
Is this guy's doctor just a quack then?

And guess what? He tried the mask for three days, decided it was so horrible that he would do anything within his power to
avoid it, so he immediately started exercising every day, treated his reflux properly, avoided alcohol, and in a few months
he lost a lot of weight, and is no longer snoring at all.

Now I will admit that he hasn't gone for a second sleep study yet, and so I suppose it's possible that he's one of the rare cases that doesn't
snore anymore but still some how has apneas. I guess we'll find out.

But I really think it's ridiculous to say that CPAP is a life sentence.

chunkyfrog wrote:--and if it is 20 or 30 pages, they can't charge you excessively for it!

I didn't know that was happening to some people. How ridiculous!

larry63 wrote:

LSAT wrote:

Sillyme wrote:We need a CPAP User's Bill of Rights. We are going to be tethered to this machine for 1/3 of the rest of our lives. We need some measure of control unless our 'professionals' are willing to communicate with us and tweak our equipment on a weekly or even daily basis.
Any suggestions:?

I think you mean...THE REST OF OUR LIVES

Huh? Where did you here this from, that there is no cure for sleep apnea??

If you seriously think that OSA is an incurable disease for _everyone_, then why is it that my office mate
was diagnosed with severe OSA, was given option to lose weight and exercise, or else be on the mask the rest of his life?
Is this guy's doctor just a quack then?

And guess what? He tried the mask for three days, decided it was so horrible that he would do anything within his power to
avoid it, so he immediately started exercising every day, treated his reflux properly, avoided alcohol, and in a few months
he lost a lot of weight, and is no longer snoring at all.

Now I will admit that he hasn't gone for a second sleep study yet, and so I suppose it's possible that he's one of the rare cases that doesn't
snore anymore but still some how has apneas. I guess we'll find out.

But I really think it's ridiculous to say that CPAP is a life sentence.

Not when the statistics are against it.
Like you said, your friend hasn't had another sleep study to prove anything one way or the other. It could be that his sleep apnea CAUSED his weight gain to begin with. That's what happens to most of us who have it.
The thing you need to realize is that there are MANY more causes of sleep apnea than just "weight". And, sleep apnea, sleep disordered breathing or poor sleep in general has profound effects on other aspects of our health.

However, there IS one "cure" for all of our ailments......death.


Den