Reactions of other less informed c-pap users.

I only know 3 other people with OSA, and none of them take it seriously.

Their WIVES on the other hand, pay close attention to me when I talk. I kinda feel sorry for the guys having to go home and listen to their wives berate them for not listening to ME!

I'll hazard an untested theory about this.

We here on this forum are not typical patients. Most of us want to fully understand our diagnosis and treatment, want to explore and weigh various options, want to hear about the experiences of others like us so we can make the best decisions about our treatment.

But if you look more broadly among the population, there's a larger proportion of patients who almost blindly trust medical authority, i.e. never question their doctor's diagnosis or treatment prescription. Maybe because they're not critical thinkers, like us. Maybe because they're scared or at least uncomfortable about taking control of the situation and are content leaving the research and decisions to their doctor. Maybe it's a cultural thing.

Also, this attitude in my admittedly limited observation appears somewhat more common among older adults than younger adults. Younger adults seem more willing to distrust authority and take control, and my sense is that sleep apnea is diagnosed in a larger proportion of older adults than younger adults - I don't mean to stereotype here, there are clearly lots of exceptions to these trends, including just about everyone on this forum, and of course I have no documentation that what I suggested here are really trends or patterns. So feel free to shoot this down if you know better.

So, my thinking is that it's not just sleep apnea that people out there are reticent to discuss. It's many other medical conditions, as well.

roncron wrote:I'll hazard an untested theory about this.

We here on this forum are not typical patients. Most of us want to fully understand our diagnosis and treatment, want to explore and weigh various options, want to hear about the experiences of others like us so we can make the best decisions about our treatment.

But if you look more broadly among the population, there's a larger proportion of patients who almost blindly trust medical authority, i.e. never question their doctor's diagnosis or treatment prescription. Maybe because they're not critical thinkers, like us. Maybe because they're scared or at least uncomfortable about taking control of the situation and are content leaving the research and decisions to their doctor. Maybe it's a cultural thing.

Also, this attitude in my admittedly limited observation appears somewhat more common among older adults than younger adults. Younger adults seem more willing to distrust authority and take control, and my sense is that sleep apnea is diagnosed in a larger proportion of older adults than younger adults - I don't mean to stereotype here, there are clearly lots of exceptions to these trends, including just about everyone on this forum, and of course I have no documentation that what I suggested here are really trends or patterns. So feel free to shoot this down if you know better.

So, my thinking is that it's not just sleep apnea that people out there are reticent to discuss. It's many other medical conditions, as well.

You may well be right, roncron, about all of this. Perhaps more of the younger demographic is more accustomed to questioning information handed down by someone just because he or she has some letters after his or her name. Perhaps more of the younger demographic is more accustomed to taking an active interest in technology, not only through the internet, but also the capabilities of their equipment. Perhaps more of the younger generation doesn't place puffery on titles and whatnot. I.e. if your doctor is a friend, then calling him by his first name.

My take is this. So the guy or gal went to school a few more years than me. He plays his part in society and I play mine. Neither is more important than the other. After all, which is more important? The mask or the machine? Machines are swappable. The mask seal is critical. No?

Further, the younger generation are more apt to take advantage of online resources. I don't think that the seniors are less interested (as a whole), but rather unaware of what is available to them.

My wife gets mad at me because I use an online research tool for my class papers. Never entering the library. Never printing off any sources. She's only got me by about 5 years. I told her, "This is how research is done. No more deliberating over 50 journals to see if they even have the topic I need in an article. I go online, type in the keywords and are presented with the articles with a 'BTW, that can be found in this journal as well...'"

The information superhighway. Don't get run over.

roncron wrote:We here on this forum are not typical patients. Most of us want to fully understand our diagnosis and treatment, want to explore and weigh various options, want to hear about the experiences of others like us so we can make the best decisions about our treatment.

But if you look more broadly among the population, there's a larger proportion of patients who almost blindly trust medical authority, i.e. never question their doctor's diagnosis or treatment prescription.

I agree with everything you said in your post, Ron...especially the part I quoted above.

I chose the first option in the poll -- that most apneics I'd personally encountered were not interested. A very few have been, but most have not been the least bit interested in knowing anything about it. The ones that were "on cpap" were, for the most part, using it sporadically, did not know the name of the machine, mask, the pressure they'd been prescribed. Nada, nothing. And no interest in finding out more.

At first I did not want to believe that there were people who had OSA and didn't want to know everything they could about it. After dealing with my DME I realized that one of the reasons I got such a hard time was because they don't normally deal with someone who questions the machine choice and masks and software and many other things. They normally dictate what the patient receives and how it's used. My DME was surprised that after 3 days I wanted him to print out my results from my Respironics machine. I told him that this is information that I need for my treatment. As a DME tech, he really has no vested interest in my well being and my doctor won't see me again until 3 months from now. If I don't make my health a priority, who will?

I have been an RT for 16 years now, howeveer I have only focused on sleep for about the last 8. During those 8 years I have had maybe a handfull of people who have really been interested in the information I give them about OSA, and only 3 who have ever asked about the software. Even on the Respiratory side of things people are very uninterested in learning about their disease process. Working in a PFT clinic we frequently had COPD, CHF and Sarcoid patients who would skip their PFT appointments. So as others have stated this issue isn't just limited to OSA, it's an overall attitude towards their health in general.

Okay, I feel like a total doofus now. I am new to this site (Hi everyone and thank you for sharing your advice and information) and my first reaction is "OMG I'm supposed to be checking data?" I've been using CPAP for about a year and have just been blissfully using it, happy I am no longer falling asleep at my desk or slapping myself in the face in the car to stay awake on my drive home. It has really turned my life around. But now it is obvious I am shamefully ignorant about how I should be taking care of my condition. Sorry about the newbie question but....what data and how do I find out about it?

Welcome, LisaSan. You might want to update your profile to include your equipment (either text or photo, your choice). That will help folks who are familiar with your particular equipment better answer questions about data functionality.

I'm on the ResMed S9 Elite and just put my first night of data in to ResScan. Very cool. I could see coughing (which I do), inhales, exhales, the 2 apnea/hypopneas that I had and a bunch of other stuff.

Without the software, you can track (with the S9) daily, weekly, monthly, quarterly, and annually averages of leak rates, AHI, etc.

GumbyCT wrote:

Many of the new folks posting here don't like to discuss their health either when asking for help. It seems they want an online diagnosis (or opinion) without providing any info (at all) sometimes. I think this fits with your theme here.

Is this wide-spread? Apparently so.

To me it is also a sign that their treatment is not effective and their brain is still low on O2.
This becomes evident when reading some threads/posts here.

Did I mention that OSA impacts the way we think? Reason? Process our thoughts?[/quote]

Apparently, after 3000 posts you must be able to think clearly about what you want to say which sometimes comes across as demeaning to others who cannot. For many of us who are still struggling with figuring out our cpap treatment, having to also figure out how to post data on this site puts us over the edge. I'm not a technically-inclined person but I'm trying to learn. I recently read a post here where someone suggested a certain photo software which would enable them to post the data from their machine to cpaptalk so that others could help them with suggestions. I tried for two days to find that software online. I discovered it was discontinued several years ago. So I ordered something else but have not downloaded it into my computer yet. Why? Because I'm still trying to fix the leaks in my mask and have been adjusting to my machine. It's been years since I felt rested in the morning. I'm here because I desperately need help. I would like to feel I could ask questions--with my brain low on O2-- without being insulted by someone who is insensitive and smug. Abrasiveness is just not helpful. Please be kind.

nameless wrote:I would like to feel I could ask questions--with my brain low on O2-- without being insulted by someone who is insensitive and smug. Abrasiveness is just not helpful. Please be kind.

I missed your question. Join the forum then post an intro to give us a background so we can help you.

GumbyCT wrote:

nameless wrote:I would like to feel I could ask questions--with my brain low on O2-- without being insulted by someone who is insensitive and smug. Abrasiveness is just not helpful. Please be kind.

I missed your question. Join the forum then post an intro to give us a background so we can help you.

No you didn't miss my question, I have joined the forum, I did try to give you my background, and your attitude was not helpful. It still isn't.

nameless wrote:

GumbyCT wrote:

nameless wrote:I would like to feel I could ask questions--with my brain low on O2-- without being insulted by someone who is insensitive and smug. Abrasiveness is just not helpful. Please be kind.

I missed your question. Join the forum then post an intro to give us a background so we can help you.

No you didn't miss my question, I have joined the forum, I did try to give you my background, and your attitude was not helpful. It still isn't.

I'll see if I can borrow yours it seems much more helpful

Thanks for replying, Roman.I am sure it could be a full time job answering newbie questions but if you could point me in the right direction regarding where I could educate myself about running the data you refer to I would really appreciate it. I am using the ResMed Elite II. Thanks again!

nameless wrote:

GumbyCT wrote:

nameless wrote:I would like to feel I could ask questions--with my brain low on O2-- without being insulted by someone who is insensitive and smug. Abrasiveness is just not helpful. Please be kind.

I missed your question. Join the forum then post an intro to give us a background so we can help you.

No you didn't miss my question, I have joined the forum, I did try to give you my background, and your attitude was not helpful. It still isn't.

Something to think about.

Most forums you have to join before you can start Whining

LisaSan wrote:Thanks for replying, Roman.I am sure it could be a full time job answering newbie questions but if you could point me in the right direction regarding where I could educate myself about running the data you refer to I would really appreciate it. I am using the ResMed Elite II. Thanks again!

I'm guessing that, since the S8 Elite II has a ResScan data card that it may be compatible with ResScan software. I just plugged my card in last night after work for the first time into my card reader (SD to USB), created myself as a patient in ResScan and was off to the races. I could see my breathing, mask leaking, when my 2 events happened all night, and the intensity of them. Also when other events like central apneas took place. Not that I know what central apneas are! LOL.

SDs are common for digital cameras. Hopefully you have one in your S8 Elite II. CPAP.com sells an SD to USB reader for about $13. I was anxious to see my results, so I picked up one on the way home from work instead.

Yeah, I'm in love with technology. Moreso, though, I think I'm in love with sleep. Sleep affects me at work (I'm an engineer who oversees producivity) and will affect my future counseling practice (marriage and family therapy). Sleep and poor sleep affect EVERYONE, not only ourselves, but our relationships, too, through decision-making, memory, and general brain functionality.

Probably this weekend, I'll show my wife what this baby (my S9 Elite) can do with regard to data monitoring. All that and it's noninvasive and no nasty electrode paste!