National Library of Med.'s presentation on Sleep Disorders

[shambharwani]

The US National Library of Medicine has interesting interactive tutorial on Diseases, Surgery, Treatments, Diagnostic Procedures etc. Here's their presentation on Sleep Disorders

http://www.nlm.nih.gov/medlineplus/tuto ... 0_no_0.htm

[roster]

That cartoon slide show is a silly waste of time and taxpayer's money. Fire the bureaucrats responsible and discontinue the programs.

[Kiralynx]

The fact that they re-use the same artwork on a number of the slides shows they're "saving money."

While it may be silly to those of us who have fought their way to useful therapy, I think it's a decent introduction for people who have no knowledge at all.

In fact, I just pointed a friend of mine to it.

[roster]

But K, they are not getting out the message about the high prevalence of sleep apnea, the many symptoms, the devastating effects and how to take control of the condition. They could just as well put up a link to cpaptalk.

So they are saving money by using re-using artwork? They could really save money by closing the operation down.

[Kiralynx]

Rooster,

It's a fact that someone can only absorb so much information at once. I see it over and over and over again in my IBD/IBS diet list.

No, the presentation doesn't cover everything -- there's quite a bit more they could have put in. But it's well-paced, and is a decent, if not perfect, INTRODUCTION to sleep disorders.

We're used to CPAPTalk... but it is very, very confusing to a newcomer. I think the Wiki is one of the best ideas in a long time.

One of the things I found so totally devastating about my apnea diagnosis was that, after years of struggle, I finally got a handle on my gut issues, and was getting the obesity dealt with. Then I had a cancer diagnosis and faced major surgery which my very capable surgeon described as "challenging." I came through that... and the pain wouldn't quit... and then I was diagnosed with, not merely apnea, but complex apnea. (We'll skip over the fact that Muffy isn't sure I really have complex apnea -- this is the diagnosis I was given.)

I was f-ckin' petrified. Machines? There are different brands of machines? Masks? You mean I'm not condemned to suffocate in a full-face monstrosity? Software? You mean I really CAN take control of this therapy the way I took control of my diet?

That's where CPAPTalk came in. But I'd've been grateful for a presentation such of the one you object to as a primer, a way to start my research. For some, it will be the springboard to more research. For others, it will be all they want to know.

I'm incredibly frustrated by the fact that my brother-in-law, my niece, and my niece's husband, all of whom are on CPAP, really don't give a fig about having a data-capable machine or checking leak rates or what have you. "Oh, you know how Aunt K is...," my niece said to a friend on her cell phone. "She has to be in control of everything...."

I personally think a presentation like the one referenced in the original post, but covering all the points you mention would be wonderful. Do we have any artists among us? Someone to pull the needed data and references together? Any script writers? Bet if we put it together, Johnny'd be willing to host it....

[roster]

I'm incredibly frustrated by the fact that my brother-in-law, my niece, and my niece's husband, all of whom are on CPAP, really don't give a fig about having a data-capable machine or checking leak rates or what have you.

This month is my fourth year anniversary since diagnosis and start of CPAP. I alerted 31 people (real, not internet) to the condition and the symptoms that had they put them at high risk. 29 of them subsequently started CPAP. Of the other two, one of them was told by the sleep doc after a PSG to avoid back sleeping and they would not need treatment. Another one claims the PSG showed sleep apnea but the doc wants to get her thyroid condition under control and then have another PSG (that was two years ago).

Now I am nearly to the point of giving up spreading the word. I am running into so many people who are in denial and a few who admit they probably have sleep apnea but would rather die young than "wear a mask".

One of my best buddies adopted CPAP a few years ago, felt better, got active and lost 60 lbs. Recently I could see he had gained back most of the 60 lbs, so I asked him how CPAP was going. He has quit.

Another buddy has not been compliant and his job and marriage have started to fall apart. He is suffering and his kids are also.

We need a new treatment or better yet a cure.

[Kiralynx]

Rooster,

Understood. A cure would be nice. My mother DIED because of what I strongly believe to have been untreated apnea. SHe wouldn't even consider a sleep study -- and neither would my father.

I run into it all the time with my IBD/IBS list: people would rather deal with blood, mucus, diarrhea or constipation, pain, and the damage the strong drugs can do to the whole system than give up rice or pasta, or, fate-forfend, popcorn at the movies. I don't understand it, myself.

[Muse-Inc]

...This month is my fourth year anniversary since diagnosis and start of CPAP...

Congrats! And thanks for the persistent explanations that I was losing therapy air when I first joined here, I was so clueless about apnea and equipment and muchly needed those repeated explanations from you during my backsliding detour.

[ThatMaskedMan]

Kiralynx, I too am stunned by cpapping coworkers who don't know or care their machine, mask, and pressure, let alone leak and AHI.

Incidentally, I was so impressed by your expression "fate forfend" that I did a Google search on it, in quotes. With or without the hyphen, it appears on the internet only 498 times, which is rare indeed.

[Patrick A]

Interesting slide show more money spent by our Guberment!