What's with ASS-A (ASAA)?

Amusing, isn't it, the way some people slavishly bleat that they are helpless to make any common-sense decisions in the course of their own CPAP treatment? In reality, if one's breathing mechanisms are working at all normally, it's pretty hard to kill oneself by misadjusting the CPAP machine. Most users can breath up to the maximum pressure their CPAP produces--and would just pull the mask off in discomfort if they had the pressure set too low or too high. Probably the most dangerous situation for most people occurs all the time, when the CPAP stops working because of a power outage; yet, I haven't heard of a single person dying from that. Ironically, it's usually patients and not their doctors who worry about power outages and go out and find power-off alarms and backup power supplies.

Leaving aside the dangers and going to the efficacy of self titration, there is at least one study out showing that users adjusting their own machines through trial and error--that is, without software--did as good a job titrating as a good sleep lab. With software and over the course of time, we should be able to do a lot better job of it than some junior tech one night in a lab where we barely slept at all because of the uncomfortable bed and surroundings. As with most forms of medical treatment, CPAP therapy generally works best if the user gets involved and does "self treat."

I have had to "self treat" from the beginning. Sleep doctors weren't of much use except for confirming sleep apnea and writing prescription. Aside from my nights in the sleep lab not being that useful, given that I hardly sleft, I had to work out sinus, mouth leak, pressure and other issues needed to get CPAP working right pretty much on my own. Maybe if I had had my very own sleep doctor, to watch over me each night while I slept, tweaking machine settings, it would have been different. But, hey, Michael Jackson had his very own sleep doctor, in the room with him, and look what happened to that poor guy. I'll bet if it had been one of us using dangerous sleep drugs like that, we would have insisted on an oximeter with loud alarm to wake us up if heart beat and O2 got too out of whack. Poor MJ probably relied on his doctor and didn't even know what he was being given.

jedimark wrote:They even created a new forum area for Self Monitoring with software, and gave me permission to post there. but straight away blocked my from posting again.
/Mark

Mark,

Your initial post is there. You also have a couple of responses, with questions for you.

Earl

Janknitz wrote:I don't know why, but I still post over there--mainly because I hate to see clueless newbies kept in the dark. I will often refer to "free open source software" to access data and if the OP asks for more info I send them here in a pm.

It burns me that I can't post links to my blog that can help newbies avoid being taken advantage of by DMEs--too much time to spell it out to every newbie.

I too post over there occasionally. And it burns me up that I can't provide a link to your post about DMEs when there's a clueless newbie. Occasionally I've resorted to PM'ing folks who are really truly deeply in trouble. I point them to here as well as your own post.

There are a number of things that I've put on my own blog that I wish I could post links to over there as well. Every time I see a person crying out for help dealing with the insomnia it tears at my heart strings. But now that I'm finally starting to feel better, I'm busy trying to put my own life back together. And I simply don't have the time to copy and paste my insomnia stuff over there all the time. Helps a lot over here that I can just refer to my signature.

I am genuinely sorry about the unwelcome atmosphere over there that greeted jedimark. So many of the posters over there are desperate for information about how their therapy works and how well their therapy is working. It's clear to me that it's much easier to go from clueless newbie to confident xPAPer over here than it is over there. And that's because of just how persnickety they are about enforcing their rules over there.

robysue wrote:So many of the posters over there are desperate for information about how their therapy works and how well their therapy is working. It's clear to me that it's much easier to go from clueless newbie to confident xPAPer over here than it is over there.

You just nailed it robysue with those two sentences and that was exactly my experience. My first few days on xPAP I came here, there, and one other forum. The other forum seemed like there were not many posters but they were pretty friendly. Then I went to ASAA, and I'm not sure what it was but ASAA was not very appealing at all, I don't think I saw much activity and I posted something that got little to no response. When I came here I found a ton of activity and when I first posted here, I got a ton of help from several people, which was so unlike the others.

I thought ASAA would be the prime site for CPAP since that was the 'association', but it turns out this site outranked them all.

I did join the other site back when I first got my diagnosis.
I made a post and not one person said anything. No welcome.. No Hi..No nothing.
I joined here and posted and was overwhelmed with warm welcomes.
I very quickly realized that my personality wouldn't sit well over there. No sense in me getting ticked off. Not productive at all.

I know we want to help them all but we can't. My plate is pretty full here so this is where I choose to focus my energy.

I must say that I also looked at both sites but this one was so much more informative and responsive to my questions without implying I'm asking a dumb one as well as so much more my style of patient/medicine/Dr.

My husband clotted and had severe damage to his leg because we didn't know that you can use a coagucheck machine and check your own INR at home and manage your own level and do MUCH better than most coumadin clinics. Since I took over he is in range over 80% of the time and his Dr appreciates it. I track his level and his other meds so we can watch for interactions. (Prednisone really shoots the level up. Opiods which have the reputation of taking it up made no difference to him.) His mom who uses a clinic is in range less than 50% of the time.

I feel the same with the central apnea. If we want optimal health we need a good medical team but a good medical team is only as good as the information they are fed and if we don't know what info they need to make the best decisions then we are doing our selfs no favors. Without this site I would not have known the night sweats are part of the apena, that we should at least ASK about an ASV machine at the next apt. That a pulse oximeter would be a VERY useful tool. That I need to know my insurance coverage and to watch for being delegated to another machine that is "data capable" yet ONLY by tracking compliance. My current insurance doesn't even CARE about compliance-only medical necessity so if the Dr approves the ASV they will BUY it.

Anyway after hours on sites this is the one that fits my style and that I'm checking most days while we try and get things set.

We appreciate you and all the hard work you've put into helping us manage our own therapy.

I don't know about any other forums - I just discovered this one the other day and it has been a godsend to me. What is the story on your software? Does it work with any machine? If I already have teh software for my machine, would it be of any value to me?

nanwilson wrote:I have a question for you....have you registered or gotten a patent for your program????? I'm not quite sure how one goes about this when you've written your own program, surely if not registered, it could be stolen by someone and registered in their name. Am I barking up a dead tree or would this be valid in your case?
Trying to help
Nan

My software is licensed under the GNU Public License, it's not "public domain".. It's free as in beer, but more importantly free as in freedom.

The code is copyrighted by me. Meaning, nobody is allowed to take my code and say they wrote it, without me getting a lawyer and going after them.

Someone can however, take my code and expand on it, or take it in another direction for their own project.. They just can't remove my copyright or change the GPL License that I, as the copyright holder, put on the code.. We call this the right to fork. If someone does this, they are bound by the terms of the GPL to give their changes to the code back, thus keeping it free.

As the author and copyright holder, I have the right to choose (if it was my wish) to dual license my code. Meaning I can also use my own code in a commercial version (or sublicense it). I can not however go back on my word and take back the GPL version.

I'm not the best at explaining the GPL.. but I am very well aware of my rights as a free software developer.

The GNU project is the best source of information on the GPL license. There is a link to it in sleepyheads welcome screen.

Edit: Arch, you beat me too it.. Sorry!

cherylann wrote:I don't know about any other forums - I just discovered this one the other day and it has been a godsend to me. What is the story on your software? Does it work with any machine? If I already have teh software for my machine, would it be of any value to me?

SleepyHead will work with ResMed machines but I can't think of anything it would show you that ResScan doesn't.
It is presented visually a little differently but the basic data is the same.
ResScan lets you zoom in on the flow rate and see the breaths in minute detail. My Respironics machine offers the flow waves but I can't zoom in on it with Encore software.. Using SleepyHead I can zoom in and see the breaths in minute detail now. SH was originally designed for people whose computers didn't use Windows OS and using Respironics machines. Encore has to have Windows to run..

SleepyHead is still alphaware...meaning it is still raw and probably buggy. Not for someone who gets upset if a program acts up. I find it remarkably stable but I am a bit of a computer geek and like trying new stuff. If you aren't real keen on playing with software that can be problematic it might be best to wait till it gets more polish to it before trying it.

cherylann wrote:I don't know about any other forums - I just discovered this one the other day and it has been a godsend to me. What is the story on your software? Does it work with any machine? If I already have teh software for my machine, would it be of any value to me?

Windows, Mac & Linux are the currently supported platforms..
It may full well compile on BSD (anywhere that has Qt libraries and OpenGL). I've not got any users who've tried.. :}

It's still under heavy development.. The most recent version is always the version built from source obtained via the GIT repository.

The binary builds available on line are just snapshots, and get old pretty darn fast.

As for if it's any value, you'll have to decide that.. I warrant it's fit for no purpose whatsoever..

poppi2 wrote:

jedimark wrote:They even created a new forum area for Self Monitoring with software, and gave me permission to post there. but straight away blocked my from posting again.
/Mark

Mark,

Your initial post is there. You also have a couple of responses, with questions for you.

Earl

Yeah.. They won't let me reply..

Slinky wrote:I was once locked out of apneasupport.com because of something I said. One moderator actually stalked me around the web, picked up that I was a monitor on a different unrelated health topic forum, etc. I didn't mean to break their rules and I was FURIOUS about being stalked around the web and e-mailed several of their moderators about it.

I was reinstated and when I was I told them that if I again outstepped their bonds or they had anything else to say to me it had better be by someone other than the stalker. I then blocked that stalker moderator from contacting me in that forum, via PM or e-mail. I've done fine there ever since.

They are a good bunch at apneasupport. But one moderator doesn't always know what the other moderator is doing and sometimes there are misunderstandings that they aren't able to clear up until they have a group confab. I'm not sure what your sig is there but if it has a link to your website or software that might have been your last/most recent "offense". Or the last moderator to delete your post(s) may not have been made aware of the "ruling" about you yet.

Cut them some slack. They aren't all bad by any means and they do have certain constraints they have to abide by to continue their relationship w/the "powers that be". After cpaptalk they are the second best apnea support forum on the web that I have found. And frankly, sometimes its the best forum for those newbies who are anxious to "play" w/their "new toy" w/o having a clue yet to what they are doing. Sometimes a little knowledge can be dangerous and as we all know playing around w/your settings when you havent a clue what you are doing or why, while it won't kill you, could be responsible for not getting good therapy and thereby finally just giving up and quitting.

You are talking a lot of sense, and I may just be over-sensitive to stuff like this.

Both who contacted me automatically assumed I was pushing self treatment.. (One admittedly was a lot friendlier than the other)

Anyone else who mentioned self treatment got chastised publicly.. They just deleted or held my posts..

I do still believe shouldn't be so silly with stuff like this.. Mods should collaborate.. Me thinks too many mods spoil their forum.

That third forum is probably talkaboutsleep and it is one heck of a good source of some great articles and interviews but as you say, unfortunately, not very busy. While talkaboutsleep also has some pretty stringent rules they are pleasant about enforcing them tactfully.

JediMark, thanks for understanding about apneasupport and you are right in away about too many moderators and the left hand sometimes not knowing what the right hand is doing. But the forum is too busy for just one or two moderators. They are volunteers and not paid for the time they spend in the forum, not just moderating but also sharing information and guidance. And - they DO allow PMs and you know darn well that they are quite aware that "forbidden" information is easily shared via PM. They can only hope that those who share "secrets" use some discretion in who they share those "secrets" with and not just willy-nilly w/those obviously just anxious to "play" w/their new "toy" just because they read how to change something.

Years ago, I used to hang out on Talkaboutsleep.com's OSA forum. Seemed active at that time. But, someone recommended that I try an unanswered question on Cpaptalk.com (about finding some way to make practical use of a continuou-record-of-waveform-to-hard-drive function that Silverlining provided for the early P-B Apaps). I didn't get a solution, but did get responses from other people interested in the same issue. I was also impressed by the fact that there was no apparent censorship on Cpaptalk.com. So, since then, when I periodically get the urge to start reading an OSA forum again, I come here.