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Re: No discussion on how to change pressure please.


Posted by Baz on August 12, 2000 at 07:51:58:

In Reply to: Re: No discussion on how to change pressure please. posted by Sandman on August 10, 2000 at 16:54:43:

I get increasingly irritated by the fact that this forum is an Uncle Sam (Big Brother Sam?) forum. Many of us are in other countries with far more enlightened laws which give users of equipment such as CPAP the capacity to decide our own destiny, if we can show that we have the capacity to do so. I have been shown how to change the pressure on my machine, I have had all the pros and cons of doing so outlined to me, and I feel I am treated like a human being. I can change my CPAP pressure and the sky has not fallen.

Many of the posts of this forum show that there are many sleep-medicos out there that may know a lot about sleep medicine, but know stuff all about how to manage CPAP machines and the humans who are plugged into them.

The practical knowledge on CPAP that is passed on in this forum is either stuff that medicos, technicians and the manufacturers don't bother to tell us, or don't want to tell us.

Sandman, you go on about what is legal and what is not as if we all knew what the laws are. Even more difficult for those of use who live outside the USA. You behave as if this forum is some kind of yessir-nossir comfortable family of compatriots. It is not. It is a bunch of irritable but friendly and genuine people who want to get on with life while plugged into something out of science fiction, knowing that CPAP sucks but is only tolerated cos life doesn't suck.

Sooner or later (sooner I hope) this forum will become not only a group of people helping each other (and it has done this incredibly well) but also a bunch of hoseheads who want to make the system better for themselves and those who will become similarly plugged. This means we become lobbyists, and agitators. We pressure the manufacturers for better consumer information. We pressure the health and insurance systems for better deals.

Let's work on being at the beginning of the hose, rather than the end of it!!

I'M TOTALLY SICK OF BEING A BALANCING ITEM IN BETWEEN THE MANUFACTURERS AND THE MEDICAL SYSTEM!!


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