Should any of you have participated in several other forums several years (or longer ago) we probably know each other. I have kept my user name the same.
I withdrew from one forum because I could not support the ever increasing restrictions - especially after an entire side of one issue under debate was deleted, and know that many wondered where I went to.
The other forum just never seemed to get up and running much.
My name was synonymous with AutoCPAP back then (and it is possible that I invented that term). I still use AutoCPAP, but have not kept totally up to date the last 2 years, and some of my industry contacts have moved on.
Anyone remember me.
Perry
Any oldtime posters from other forums remember: Perry
perry
I remember you very well, Perry.
I am a graduate of the other place and probably hold the record for postings removed.
I remember you as one of the most knowledgeable and selfless poster who knew more than all the rest of us combined.
I have tried to e-mail you without success although the mail is not returned.
I hope you will pull up a chair, lean back and impart your expertise here with the certainty your postings will not be removed.
You are very much in friendly territory and I hope you will be appreciated.
Lots of things have happened since you posted over there- I hope you can fill us in on the technical detail.
I am curious about what the straw was that broke your back.
Be warned, though, that there are lots of folks here very up to speed.
I still post over there, but try to keep a low profile.
I know too well the removal of entire threads for reason known only to the remover.
Still not sure who does the removing though.
This forum does not close every time the owner needs to take a bathroom break./
Welcome.
I am a graduate of the other place and probably hold the record for postings removed.
I remember you as one of the most knowledgeable and selfless poster who knew more than all the rest of us combined.
I have tried to e-mail you without success although the mail is not returned.
I hope you will pull up a chair, lean back and impart your expertise here with the certainty your postings will not be removed.
You are very much in friendly territory and I hope you will be appreciated.
Lots of things have happened since you posted over there- I hope you can fill us in on the technical detail.
I am curious about what the straw was that broke your back.
Be warned, though, that there are lots of folks here very up to speed.
I still post over there, but try to keep a low profile.
I know too well the removal of entire threads for reason known only to the remover.
Still not sure who does the removing though.
This forum does not close every time the owner needs to take a bathroom break./
Welcome.
Pery,
I am new to this whole hosehead world (hence the name...), however, if you were a pioneer who advocated APAP, I owe you my gratitude. I just bought my APAP (out of pocket, got tired of fighting insurance and wanted to start treatment) - it arrived Saturday. I came to the decision to stick to my guns about having APAP based off of what I learned at this forum about the benefits of it. Thanks and stick around, there are great people here - and very funny ones too that will make you laugh when you most need it
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): APAP
I am new to this whole hosehead world (hence the name...), however, if you were a pioneer who advocated APAP, I owe you my gratitude. I just bought my APAP (out of pocket, got tired of fighting insurance and wanted to start treatment) - it arrived Saturday. I came to the decision to stick to my guns about having APAP based off of what I learned at this forum about the benefits of it. Thanks and stick around, there are great people here - and very funny ones too that will make you laugh when you most need it
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): APAP
still snork1
I think I know the forums you are talking about, especially after the joke:
"This forum does not close every time the owner needs to take a bathroom break./"
Which put me on the floor laughing, since I know EXACTLY which forum that is.
I have been on the apnea forums for a couple of years now. Not a newbie, but maybe not one of The Ancient Ones, The True Pioneers.
You are in friendly territory here and I will thank I kind hosts any time I get the chance, since I can appreciate just how good of hosts they are, and what a great COMMUNITY that has resulted in here.
"This forum does not close every time the owner needs to take a bathroom break./"
Which put me on the floor laughing, since I know EXACTLY which forum that is.
I have been on the apnea forums for a couple of years now. Not a newbie, but maybe not one of The Ancient Ones, The True Pioneers.
You are in friendly territory here and I will thank I kind hosts any time I get the chance, since I can appreciate just how good of hosts they are, and what a great COMMUNITY that has resulted in here.
Remember:
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Perry! omg! You were before my time, but I well remember long nights prowling through the archives of sleepnet (yeah, I'll say the word! lol ) when that was the only apnea forum I was aware of. Desperately trying to figure out what to do for myself, by myself. Reading, reading, reading. Your posts were the ones that gave me the info I needed to get the kind of machine I needed.
I remember regretting not having been there when you were actively posting. Later, I saw you post a few times on TAS, then saw no more until...now!!
Folks, Perry is a legend. A living one!!
I've always wanted to tell you, "Thank you." I'm saying it now. I owe my good treatment to the info I learned from many people...mainly you and -SWS.
It's soooo good to see you posting here, Perry.
Laura
I remember regretting not having been there when you were actively posting. Later, I saw you post a few times on TAS, then saw no more until...now!!
Folks, Perry is a legend. A living one!!
I've always wanted to tell you, "Thank you." I'm saying it now. I owe my good treatment to the info I learned from many people...mainly you and -SWS.
It's soooo good to see you posting here, Perry.
Laura
Hi Perry!
A legend??
Wow! For Rested Gal to refer to you as a legend and equate you with the likes of SWS, you must be someone mighty special!
I sure look forward to learning more about you and what you have to say.
Welcome aboard!
Rested Gal is kind of a legend herself. She is quite the avid reader, soaking up knowledge about sleep apnea and lots more, like the proverbial sponge. Her high number of posts here is misleading. They would be far higher if you tallied up all her posts, for she visits all of the boards. She keeps up with what's going on, and always has an open mind. Hopefully she's gone to bed and is not reading this, for she is certain to give me a hard time about this.
So you are in good company, Perry.
Again, welcome.
Linda
A legend??
Wow! For Rested Gal to refer to you as a legend and equate you with the likes of SWS, you must be someone mighty special!
I sure look forward to learning more about you and what you have to say.
Welcome aboard!
Rested Gal is kind of a legend herself. She is quite the avid reader, soaking up knowledge about sleep apnea and lots more, like the proverbial sponge. Her high number of posts here is misleading. They would be far higher if you tallied up all her posts, for she visits all of the boards. She keeps up with what's going on, and always has an open mind. Hopefully she's gone to bed and is not reading this, for she is certain to give me a hard time about this.
So you are in good company, Perry.
Again, welcome.
Linda
-
Barb (Seattle)
- Posts: 663
- Joined: Wed Aug 03, 2005 6:41 pm
Re: still snork1
*raises hand* I am a "veteran" of that other board. Hi Perry! Great to see you!
Ain't THAT the truth! LOLOLsnork1 wrote:I think I know the forums you are talking about, especially after the joke:
"This forum does not close every time the owner needs to take a bathroom break
For me, Rested Gal's comments here are a sobering reminder of just how important discussion boards can be for those people with sleep apnea who search for the information they desparately need to get through this.rested gal wrote: Perry! omg! You were before my time, but I well remember long nights prowling through the archives of sleepnet (yeah, I'll say the word! lol ) when that was the only apnea forum I was aware of. Desperately trying to figure out what to do for myself, by myself. Reading, reading, reading. Your posts were the ones that gave me the info I needed to get the kind of machine I needed.
I remember regretting not having been there when you were actively posting. Later, I saw you post a few times on TAS, then saw no more until...now!!
Folks, Perry is a legend. A living one!!
I've always wanted to tell you, "Thank you." I'm saying it now. I owe my good treatment to the info I learned from many people...mainly you and -SWS.
It's soooo good to see you posting here, Perry.
Laura
"Praise the bridge that carries you over." People need information whenever and however they find it. They may happen to wander into one site rather than another or at a time when only a few boards exist. At least they, such as RG, were able to find something, ANYTHING, which might give them the least little bit of support they just might need to deal with this condition.
Regardless of whatever problems may have developed for that forum or any others, they at least existed at one point or another, and happily there were people like Perry and RG to help a few scared people get the support they need. In the face of little or no information, especially years ago, a little information and support from a single forum likely made all the difference in the world for some people. It's just me but I think we should be grateful for all the forerunners of these boards.
Given what little help is out there for us, these boards are a godsend. So regardless of the quality of those boards or how they might have changed, perhaps we should be glad there was something there. Afterall, thanks to the help of those boards, we now have veteran forumers such as Perry and RG to help us through.
Linda
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popcorn machine
- Posts: 28
- Joined: Mon Dec 19, 2005 12:14 am
- Location: popping in from place to place
-
Barb (Seattle)
- Posts: 663
- Joined: Wed Aug 03, 2005 6:41 pm
Very true! Every forum "out there" is helpful to someone searching for answers....
Just gets a little frustrating when it's the only one you know of, and really would like input and the forum is closed for 2 weeks! Although if they found one board, they could find another one while it's closed...like THIS awesome place
Just gets a little frustrating when it's the only one you know of, and really would like input and the forum is closed for 2 weeks! Although if they found one board, they could find another one while it's closed...like THIS awesome place
Perry
OK, Perry, the bands are playing for you, now it is time for a speech.
Fill us in on your whereabouts and Xpap activities since you dropped out.
Fill us in on your whereabouts and Xpap activities since you dropped out.
Looks like I have lots of questions to answer; that’s fair. So in no specific order:
Popcorn Machine ask: “Considering your history, how did you get here and why now?”
I just found out that this “active” forum existed yesterday; and I see that there is still a role for me to play (in several ways). Please read on.
Tomjax: Shortly after my exit from sleepnet I had to change my email addresses. I was getting over 200 spam mails per day on each address. PM me and we can reconnect. Your other questions will be answered below.
Rested Gal: You’re welcome! So very welcome…
I am glad that my postings were so helpful. I have reviewed some of the postings here and see that much of my information is still not readily known.
I am also pleased as punch that you have taken it upon yourself to educate yourself and help other. That is how I started too.
To the others; a lot of background will help, and only then can I explain why I have returned and what I would like to do.
First, I am not a medical professional. A have severe OSA. My blood O2 dropped to 43% during the sleep study (with an interesting out of body experience that I had previously experienced), and I am one of those who could actually die in my sleep from OSA (this does happen). I had to make treatment work.
“Making it work” led me into the details of how the Auto-Titrating machines worked, and I passed on what I knew to others via Internet forums, which ultimately gave me the contacts to better develop my knowledge. I am an engineer by training.
At one time (several years ago) I had several sleep technicians, a sleep nurse, and some sleep Dr’s in my personal contact loop; along with the product managers at all the major PAP Manufacturers and several internet DME’s. I have worked with hundreds of AutoPAP patients who were trying to make things work for them. Please note that there have always been limits to what I can do, and many times I sent people back to their Dr. or DME (there is a very clear line between just helping and practicing medicine, and I never provide anyone with bootleg software or machines). However, the data I got from these people became part of the pool of information that I could use to provide information to everyone else (I never give names or specifics). I am convinced that some of the features in some of the current AutoPAP machines and software are there because of what I did and argued for (I had access to and made comments on some product that was under development).
So, a simple answer on who I am is a very well educated hosehead that had established credibility with the Mfrs and some of the medical community.
My break with sleepnet occurred when that forum moderator decided (supposedly for privacy reasons) to eliminate the ability of anyone to contact anyone else (I do note that lots of other forums allow personal contact and don’t seem to have the problems that the sleepnet moderator is concerned about). Much of what I did depended on this contact. I even had PAP Manufacturers contact me through the forum because they thought I was the kind of person they wanted to be testing their machines with (and have had loaner machines from 3 different Mfr’s).
Also, the fact is that I and several others had done more than just help people with PAP treatment. People would contact me for help thinking it was just the PAP set-up – and after talking to them it was not uncommon for me to send them back to the Dr. to check for other medical problems. 3 times I insisted that people immediately go to the emergency room. Two of these people later thanked me. The 3rd person blew me off on it - and I never heard from them again (and I tried to contact them several days later). You do not have to be a Dr. to notice certain symptom patterns and tell people to get to an emergency room – or to see their Dr. soon to check for other medical problems.
At the same time that moderator deleted the entire side of an issue. In the end, being cut from direct access to people who were willing to share their data files and discuss their problems; and seeing the ever increasing level of censorship led me to conclude that I could no longer support sleepnet. I was going to post on why I was leaving (in a kind way so that it would not be deleted) and link it to a previous post from Mile High Airman (MHAM) – only I discovered that the previous MHAM post had been deleted as well. Basil, are you here?). Thus I did not post an exit message.
This was also a time that I was finishing up a comprehensive paper on how AutoCPAPs work with detailed equipment reviews. That paper had been reviewed by some of the top Dr’s in the field (including the chairperson of the medical committee that dealt with OSA). However, it was too long to get published in most journals – and did not have all the proper referencing needed for some of them (this paper was the work of several years, and several forum people helped review it). There were options – but they cost money. I will note that some of my observations did “magically” appear in published medical papers a year of so latter. That is fine – the key was to get the information out there.
I am also one of the founding members of Talk About Sleep (TAS); but it never really got off the ground, and I did not really like the way its forum worked (although I hope you can find my post in the archives). I tried a chat session once, but that did not work well because I would actually write an answer to the question asked, and by then everyone had moved well beyond that question with light comments (I am not the fastest writer – and good answers are usually more than 10 words long).
I seriously looked at starting my own website and forum. Unfortunately, money and time were issues. I was seriously in debt and was working mammoth hours for extended periods (which still can occur – and I am still paying off debt from years ago).
However, after I attended the 2003 APSS (in Chicago – I was sponsored into the show: this is the annual conference for sleep science specialist. ) I did reappear on TAS for a short while and then I made a proposal based on what I learned and what I wanted to do (after some discussion with my contact group). My proposal was related to the concept of becoming an “OSA” consumer advocate. Most of you do not realize that the companies are designing and selling machines that the Dr’s and DME’s want – not what the patent wants. They are providing information and features that the Dr’s and DME’s want – not what the patients want. I thought that I would be a perfect candidate to fulfill that role – if I could figure out how to fund it and turn it into a non profit corporation.
With one exception of support from someone who knew me from sleepnet, the idea fell flat at that time. Most people thought that I should just get a job with one of the Mfr’s.
It also did not help that I had some minor health issues to figure out at the time (now under control and not a great problem for the future).
So now, 2.5 years later I here that there is another major forum out there – and I can see that it allows the kind of contact that I would need to continue my work.
I still have the problems of limited time and money; but I have had time to think of things that could be done to make it work. I have had time to think of my goals in life – and one of them is helping people with OSA (there are a few other things as well). Return to what I was doing (on a limited basis due to work) – and grow from there.
So here is my proposal: Along with general helping of people – what I would really like to do is set-up and operate a non profit organization to help people with OSA. One thing I would like to do is to have a place, other than my house (which I have done), where people could come and try out the different AutoPAP’s, and have help with the many other issues. I would also like to be able to have a real MD available at least part time to answer questions. I’d like to provide sponsorship of sleep studies and equipment for the financially needy. Why could their not be several sites around the US for certain things? Of course, I am open to other suggestions.
To pull this off requires sufficient routine income for me to be able to quite my job, and then some support after that. I do not see how I can do it while still employed in a full time (+) job. Nor do I think I can suddenly get a couple thousand people and some companies to commit to donations for several years to really get it set-up and running (but getting those donations will be possible once it is up and running).
But what could be done… What if there were ways that you all could help support me in this quest either directly or in other fashions (perhaps refer other people). Lots of possibilities and with those possibilities are potential rules on how it could be done. The important thing is to ensure that it is legal and ethical.
So my first question is how many people would like to see an “Independent - Patient Advocate” and a non profit organization set-up to help people with OSA.
My second question is how many people would be willing to work, perhaps for several years, on a funding mechanism to allow it to happen.
I am aware that many of you do not know me, and some of you may be going “this is a scam…” I hope that those that do know me will help with that.
As for what I can do for this forum at this time. While my AutoPAP paper is dated a couple years on the exact equipment – much of the paper is still relevant today. Thus for starters I could post some sections of it since it was never formally published. Other things come to mind. While I would like to help on a lot of issues – the fact is that I probably will not have time for that.
I also admit that I currently do not have the latest equipment at this time from all the Mfr’s and am not sure about software status (I should have most of it – note that I purchased it or was given it by the Mfr’s). I will have to become active again and rebuild my network of people and make contacts again as some have moved on – and that will take time. Keep in mind that I have other obligations as well. While I was the AutoPAP expert several years ago – that took me years to get there, and it will take some time to come fully up to speed on the details of the latest equipment and software. I can certainly answer virtually any question on older models.
This forum has a PM function to contact me.
One final thing, I live in Wisconsin. I used to enjoy meeting fellow hoseheads. Let me know. Have AutoPAP - Will Travel...
Perry
Popcorn Machine ask: “Considering your history, how did you get here and why now?”
I just found out that this “active” forum existed yesterday; and I see that there is still a role for me to play (in several ways). Please read on.
Tomjax: Shortly after my exit from sleepnet I had to change my email addresses. I was getting over 200 spam mails per day on each address. PM me and we can reconnect. Your other questions will be answered below.
Rested Gal: You’re welcome! So very welcome…
I am glad that my postings were so helpful. I have reviewed some of the postings here and see that much of my information is still not readily known.
I am also pleased as punch that you have taken it upon yourself to educate yourself and help other. That is how I started too.
To the others; a lot of background will help, and only then can I explain why I have returned and what I would like to do.
First, I am not a medical professional. A have severe OSA. My blood O2 dropped to 43% during the sleep study (with an interesting out of body experience that I had previously experienced), and I am one of those who could actually die in my sleep from OSA (this does happen). I had to make treatment work.
“Making it work” led me into the details of how the Auto-Titrating machines worked, and I passed on what I knew to others via Internet forums, which ultimately gave me the contacts to better develop my knowledge. I am an engineer by training.
At one time (several years ago) I had several sleep technicians, a sleep nurse, and some sleep Dr’s in my personal contact loop; along with the product managers at all the major PAP Manufacturers and several internet DME’s. I have worked with hundreds of AutoPAP patients who were trying to make things work for them. Please note that there have always been limits to what I can do, and many times I sent people back to their Dr. or DME (there is a very clear line between just helping and practicing medicine, and I never provide anyone with bootleg software or machines). However, the data I got from these people became part of the pool of information that I could use to provide information to everyone else (I never give names or specifics). I am convinced that some of the features in some of the current AutoPAP machines and software are there because of what I did and argued for (I had access to and made comments on some product that was under development).
So, a simple answer on who I am is a very well educated hosehead that had established credibility with the Mfrs and some of the medical community.
My break with sleepnet occurred when that forum moderator decided (supposedly for privacy reasons) to eliminate the ability of anyone to contact anyone else (I do note that lots of other forums allow personal contact and don’t seem to have the problems that the sleepnet moderator is concerned about). Much of what I did depended on this contact. I even had PAP Manufacturers contact me through the forum because they thought I was the kind of person they wanted to be testing their machines with (and have had loaner machines from 3 different Mfr’s).
Also, the fact is that I and several others had done more than just help people with PAP treatment. People would contact me for help thinking it was just the PAP set-up – and after talking to them it was not uncommon for me to send them back to the Dr. to check for other medical problems. 3 times I insisted that people immediately go to the emergency room. Two of these people later thanked me. The 3rd person blew me off on it - and I never heard from them again (and I tried to contact them several days later). You do not have to be a Dr. to notice certain symptom patterns and tell people to get to an emergency room – or to see their Dr. soon to check for other medical problems.
At the same time that moderator deleted the entire side of an issue. In the end, being cut from direct access to people who were willing to share their data files and discuss their problems; and seeing the ever increasing level of censorship led me to conclude that I could no longer support sleepnet. I was going to post on why I was leaving (in a kind way so that it would not be deleted) and link it to a previous post from Mile High Airman (MHAM) – only I discovered that the previous MHAM post had been deleted as well. Basil, are you here?). Thus I did not post an exit message.
This was also a time that I was finishing up a comprehensive paper on how AutoCPAPs work with detailed equipment reviews. That paper had been reviewed by some of the top Dr’s in the field (including the chairperson of the medical committee that dealt with OSA). However, it was too long to get published in most journals – and did not have all the proper referencing needed for some of them (this paper was the work of several years, and several forum people helped review it). There were options – but they cost money. I will note that some of my observations did “magically” appear in published medical papers a year of so latter. That is fine – the key was to get the information out there.
I am also one of the founding members of Talk About Sleep (TAS); but it never really got off the ground, and I did not really like the way its forum worked (although I hope you can find my post in the archives). I tried a chat session once, but that did not work well because I would actually write an answer to the question asked, and by then everyone had moved well beyond that question with light comments (I am not the fastest writer – and good answers are usually more than 10 words long).
I seriously looked at starting my own website and forum. Unfortunately, money and time were issues. I was seriously in debt and was working mammoth hours for extended periods (which still can occur – and I am still paying off debt from years ago).
However, after I attended the 2003 APSS (in Chicago – I was sponsored into the show: this is the annual conference for sleep science specialist. ) I did reappear on TAS for a short while and then I made a proposal based on what I learned and what I wanted to do (after some discussion with my contact group). My proposal was related to the concept of becoming an “OSA” consumer advocate. Most of you do not realize that the companies are designing and selling machines that the Dr’s and DME’s want – not what the patent wants. They are providing information and features that the Dr’s and DME’s want – not what the patients want. I thought that I would be a perfect candidate to fulfill that role – if I could figure out how to fund it and turn it into a non profit corporation.
With one exception of support from someone who knew me from sleepnet, the idea fell flat at that time. Most people thought that I should just get a job with one of the Mfr’s.
It also did not help that I had some minor health issues to figure out at the time (now under control and not a great problem for the future).
So now, 2.5 years later I here that there is another major forum out there – and I can see that it allows the kind of contact that I would need to continue my work.
I still have the problems of limited time and money; but I have had time to think of things that could be done to make it work. I have had time to think of my goals in life – and one of them is helping people with OSA (there are a few other things as well). Return to what I was doing (on a limited basis due to work) – and grow from there.
So here is my proposal: Along with general helping of people – what I would really like to do is set-up and operate a non profit organization to help people with OSA. One thing I would like to do is to have a place, other than my house (which I have done), where people could come and try out the different AutoPAP’s, and have help with the many other issues. I would also like to be able to have a real MD available at least part time to answer questions. I’d like to provide sponsorship of sleep studies and equipment for the financially needy. Why could their not be several sites around the US for certain things? Of course, I am open to other suggestions.
To pull this off requires sufficient routine income for me to be able to quite my job, and then some support after that. I do not see how I can do it while still employed in a full time (+) job. Nor do I think I can suddenly get a couple thousand people and some companies to commit to donations for several years to really get it set-up and running (but getting those donations will be possible once it is up and running).
But what could be done… What if there were ways that you all could help support me in this quest either directly or in other fashions (perhaps refer other people). Lots of possibilities and with those possibilities are potential rules on how it could be done. The important thing is to ensure that it is legal and ethical.
So my first question is how many people would like to see an “Independent - Patient Advocate” and a non profit organization set-up to help people with OSA.
My second question is how many people would be willing to work, perhaps for several years, on a funding mechanism to allow it to happen.
I am aware that many of you do not know me, and some of you may be going “this is a scam…” I hope that those that do know me will help with that.
As for what I can do for this forum at this time. While my AutoPAP paper is dated a couple years on the exact equipment – much of the paper is still relevant today. Thus for starters I could post some sections of it since it was never formally published. Other things come to mind. While I would like to help on a lot of issues – the fact is that I probably will not have time for that.
I also admit that I currently do not have the latest equipment at this time from all the Mfr’s and am not sure about software status (I should have most of it – note that I purchased it or was given it by the Mfr’s). I will have to become active again and rebuild my network of people and make contacts again as some have moved on – and that will take time. Keep in mind that I have other obligations as well. While I was the AutoPAP expert several years ago – that took me years to get there, and it will take some time to come fully up to speed on the details of the latest equipment and software. I can certainly answer virtually any question on older models.
This forum has a PM function to contact me.
One final thing, I live in Wisconsin. I used to enjoy meeting fellow hoseheads. Let me know. Have AutoPAP - Will Travel...
Perry
-
johnnygoodman
- Posts: 784
- Joined: Sun Oct 24, 2004 5:13 pm
- Contact:
Howdy Perry,
In regards to the software advances, here is a thread on MyEncore:
viewtopic.php?t=3775
and here is the cpaptalk.com hosted MyEncore page:
myencore.php
Those were done by cpaptalk member derek and function as a much easier way to view the gobs of data coming out of your machine.
In regards to patient advocacy. I believe that is a term that means something different to each person who uses it.
To me, it means getting people access to equipment at fair, free market prices. It means giving people free access to information and their peers, who are dealing with the same things. It means helping those who do have insurance retain the liberty to make their own decisions regarding equipment. A last important note: it never means what you intend to do, only what actually results.
Here are some of the results that help patients every single day, that I'm proud to have been involved with:
The Best Place For Affordable CPAP Equipment
https://www.cpap.com
Free Intro To The Sleep Lab DVD, Free Download or DVD
cpaptalk-cpap-video-movie.php?videos=mail
Here's Us Giving It Away At the APSS
viewArticle/cpaptalk-booth-Denver-APSS-2005.html
The only DME in the world that lets you choose your equipment
http://www.billmyinsurance.com
The only website in the world giving Medicare patients their choice of equipment
http://www.cpapforseniors.com
What I'm getting at here is that due to experience, I've become leery of those who want to help in a grand fashion. Many with the good intentions of helping out the CPAP community have succeded only in watering it down and censoring it. There's one specific non-profit already in existance that comes to mind.
The real power to help is in the hands of those who get out and do it without a grand plan. Rested Gal is always helping newbies. She recently PM'd me a long review of our CPAP and APAP Compare charts with a ton of suggestions. We put every single one of them in place and now look at this free tool everyone can use:
https://www.cpap.com/cpap-compare-chart/CPAP
Derek decided that Encore Pro didn't cut it, so he created something that did. After he put forward an effort that produced results, we stepped in a supported his effort by hosting and promoting MyEncore.
It sounds like you have done the same with your APAP write up paper. I'll be getting shoulder surgery soon and will be in bed for a few days. I'd love to read your APAP write up. My email is johnny@cpap.com.
As those around here know, that email box and my cpaptalk pm box is always open to suggestions. I also always welcome help in any form people are willing to offer.
Johnny
In regards to the software advances, here is a thread on MyEncore:
viewtopic.php?t=3775
and here is the cpaptalk.com hosted MyEncore page:
myencore.php
Those were done by cpaptalk member derek and function as a much easier way to view the gobs of data coming out of your machine.
In regards to patient advocacy. I believe that is a term that means something different to each person who uses it.
To me, it means getting people access to equipment at fair, free market prices. It means giving people free access to information and their peers, who are dealing with the same things. It means helping those who do have insurance retain the liberty to make their own decisions regarding equipment. A last important note: it never means what you intend to do, only what actually results.
Here are some of the results that help patients every single day, that I'm proud to have been involved with:
The Best Place For Affordable CPAP Equipment
https://www.cpap.com
Free Intro To The Sleep Lab DVD, Free Download or DVD
cpaptalk-cpap-video-movie.php?videos=mail
Here's Us Giving It Away At the APSS
viewArticle/cpaptalk-booth-Denver-APSS-2005.html
The only DME in the world that lets you choose your equipment
http://www.billmyinsurance.com
The only website in the world giving Medicare patients their choice of equipment
http://www.cpapforseniors.com
What I'm getting at here is that due to experience, I've become leery of those who want to help in a grand fashion. Many with the good intentions of helping out the CPAP community have succeded only in watering it down and censoring it. There's one specific non-profit already in existance that comes to mind.
The real power to help is in the hands of those who get out and do it without a grand plan. Rested Gal is always helping newbies. She recently PM'd me a long review of our CPAP and APAP Compare charts with a ton of suggestions. We put every single one of them in place and now look at this free tool everyone can use:
https://www.cpap.com/cpap-compare-chart/CPAP
Derek decided that Encore Pro didn't cut it, so he created something that did. After he put forward an effort that produced results, we stepped in a supported his effort by hosting and promoting MyEncore.
It sounds like you have done the same with your APAP write up paper. I'll be getting shoulder surgery soon and will be in bed for a few days. I'd love to read your APAP write up. My email is johnny@cpap.com.
As those around here know, that email box and my cpaptalk pm box is always open to suggestions. I also always welcome help in any form people are willing to offer.
Johnny
-
neversleeps
- Posts: 1141
- Joined: Wed Apr 20, 2005 7:06 pm
- Location: Minnesota
Very interesting. One thing you'll be glad to hear regarding your statements:
Can you please provide us with a link to your paper on APAPs?
APAPs are heavily discussed here as well, as you've no doubt seen by going through all the old posts. There are many well-educated highly proactive APAP and CPAP users here who have the software for their respective machines and conduct self-titration experiments to obtain the very best treatment possible. There are also members who post here at cpaptalk with a great deal of experience in sleep labs and are kind enough to lend their expertise in interpreting PSG results.
In addition to having the input of so many individuals, many of us have also found https://www.cpap.com to be an excellent source for equipment and information. The prices are excellent, the delivery is fast, the selection is varied and the employees are knowledgable and friendly. Another frequent topic of conversation is how much better the prices and equipment are through cpap.com vs. what many of the DME's decide to supply based upon their profit margin.
It seems much of the information you sought to disseminate but were prohibited from discussing on previous apnea forums is standard fare here at cpaptalk. It will be great to have another voice promoting patient-directed therapy.
Most of us do realize this and it is often the topic of discussion.Most of you do not realize that the companies are designing and selling machines that the Dr’s and DME’s want – not what the patent wants. They are providing information and features that the Dr’s and DME’s want – not what the patients want.
Can you please provide us with a link to your paper on APAPs?
APAPs are heavily discussed here as well, as you've no doubt seen by going through all the old posts. There are many well-educated highly proactive APAP and CPAP users here who have the software for their respective machines and conduct self-titration experiments to obtain the very best treatment possible. There are also members who post here at cpaptalk with a great deal of experience in sleep labs and are kind enough to lend their expertise in interpreting PSG results.
In addition to having the input of so many individuals, many of us have also found https://www.cpap.com to be an excellent source for equipment and information. The prices are excellent, the delivery is fast, the selection is varied and the employees are knowledgable and friendly. Another frequent topic of conversation is how much better the prices and equipment are through cpap.com vs. what many of the DME's decide to supply based upon their profit margin.
It seems much of the information you sought to disseminate but were prohibited from discussing on previous apnea forums is standard fare here at cpaptalk. It will be great to have another voice promoting patient-directed therapy.