CPAPtalk.com

Julie wrote:There is another side (or few). There may be the image thing of an older, fatter, snoring-with-mouth-open guy who people don't want to relate to. There's the mass of people who don't want to think about dying in their sleep or even on the road - other ways are more interesting, and being a sleepy dud (and not dude) is not sexy or cute, or courageous... raising money to make people aware of the seriousness is going to be hard. And I think lots of people don't even want to acknowledge that OSA exists... kind of like chronic fatigue, or fibro, etc. etc.

chunkyfrog wrote:From the time of Charles Dickens, sleep apnea has been publicly linked to obesity, which has been ASSumed to be due to poor self-control, a CHARACTER FLAW. Wrong as this may be, the connection remains. It is easy to garner sympathy for sick children, dying mothers, and crippled soldiers, but people who cannot sleep and breathe at the same time, regardless of their (our) pain, are not receiving any sympathy, and support follows sympathy. Too many wish the world were simple, and in their infinite myopia, behave accordingly.

All that you say is true, and all that you say was also true of AIDS. It was dismissed as a disease which affected "those people", junkies and perverts. I don't think you necessarily have to turn the sufferers of OSA into cuddly, furry, big-eyed cuties. You can also show how OSA victimizes healthy children. How many innocent children have been killed by weary driving? How many children have been orphaned by the death of their parents from OSA related heart attack, stroke or cancer? The thing I don't get is why no one else seems appalled by overwhelming numbers which the CDC and NIH claim are true? 20% of the US? How long can the country hold to these absurd preconceptions in the face of those kind of numbers?

Diabetes, heart disease, alcoholism, are all "lifestyle" diseases. Does that mean they shouldn't be treated properly, or that it's impossible to raise money to combat them? Sure, there are a lot of people who don't think OSA exists. Are they right? I only found out I have OSA because I was admitted to the hospital with extreme hypertension. I was hooked up to a heart monitor and the doctor came to me the next morning and told me I have severe OSA. I never told them I had a sleep disorder. They determined it by objective evidence. We need to fight the ignorance which denies the existence of this condition, not give in to it.

Wulfman... wrote:There are lots of entities which are trying to get the word out.
This is one of them:

http://www.reggiewhitefoundation.org/

One problem is that so many people are in denial. Heck, we've seen it here thousands of times......even AFTER they're diagnosed and have their equipment. They don't want to use it, they come up with all kinds of excuses not to use it, they think surgery or weight loss will "cure" them, and on and on........

As the stand-up comedian Ron White would say........"YOU CAN'T FIX STUPID!!!"


Den

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Yup, things are changing. The late Reggie White isn't the only well known person whose OSA has been publicized. This is one of the many natural alliances which needs to be exploited in order to turn things around. My contention is that people like Regis Philbin and the estate of the late Mr. White are unlikely to know about a lot about the pitfalls of seeking treatment.We know. There is a place in the process of change for people like us, people who know the ropes.

You can't cure stupid, but you can cure ignorant. Taint easy, but the world does benefit from squeaky wheels making annoying noise. To resort to cliche, if not us, then who? If not now, then when?

Getting people properly diagnosed with apnea is not always easy.
I accompanied my brother in law to his doctor appointments for two years explaining that I believed he had sleep apnea, before I convinced the doctor to have him tested. I think he scored about 300 on the Epworth test.
So you have to consider the patient traveling down De Nile, the doctors to ignorant to recognize sleep apnea when it is screaming at them, and the insurance companies happily not paying for sleep studies and PAP equipment.

bwexler wrote:Getting people properly diagnosed with apnea is not always easy.
I accompanied my brother in law to his doctor appointments for two years explaining that I believed he had sleep apnea, before I convinced the doctor to have him tested. I think he scored about 300 on the Epworth test.
So you have to consider the patient traveling down De Nile, the doctors to ignorant to recognize sleep apnea when it is screaming at them, and the insurance companies happily not paying for sleep studies and PAP equipment.

Your brother-in-law was lucky to have you in his life. That's what I'm proposing, that we, the knowledgeable patients, try to be eveyone's brother-in-law. For us to be that insistent, persistent voice that tells people they're screwing themselves. How else can you overcome denial? Institutional denial as well. Insurance companies need to wake up to the fact that spending money on testing will save them huge amounts of money. Someone, I forget who, once posted a comparison of the cost of testing for OSA to the cost of treating stroke and testing for OSA costs a fraction of what stroke treatment costs. Similarly the insurance companies need to wake up to the value of data-capable machines. I can't think of an issue where the knowledge of patients here would be more important than in warning people about the dangers of getting stuck with a brick.

JQLewis wrote:

bwexler wrote:Getting people properly diagnosed with apnea is not always easy.
I accompanied my brother in law to his doctor appointments for two years explaining that I believed he had sleep apnea, before I convinced the doctor to have him tested. I think he scored about 300 on the Epworth test.
So you have to consider the patient traveling down De Nile, the doctors to ignorant to recognize sleep apnea when it is screaming at them, and the insurance companies happily not paying for sleep studies and PAP equipment.

Your brother-in-law was lucky to have you in his life. That's what I'm proposing, that we, the knowledgeable patients, try to be eveyone's brother-in-law. For us to be that insistent, persistent voice that tells people they're screwing themselves. How else can you overcome denial? Institutional denial as well. Insurance companies need to wake up to the fact that spending money on testing will save them huge amounts of money. Someone, I forget who, once posted a comparison of the cost of testing for OSA to the cost of treating stroke and testing for OSA costs a fraction of what stroke treatment costs. Similarly the insurance companies need to wake up to the value of data-capable machines. I can't think of an issue where the knowledge of patients here would be more important than in warning people about the dangers of getting stuck with a brick.

If you could just convince the manufacturers to quit making "bricks" (non-data-capable CPAPs), that would be a huge leap in the right direction.


Den

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bwexler wrote:Getting people properly diagnosed with apnea is not always easy.
I accompanied my brother in law to his doctor appointments for two years explaining that I believed he had sleep apnea, before I convinced the doctor to have him tested. I think he scored about 300 on the Epworth test.
So you have to consider the patient traveling down De Nile, the doctors to ignorant to recognize sleep apnea when it is screaming at them, and the insurance companies happily not paying for sleep studies and PAP equipment.

It would be interesting to hear more about this Doctor's responses in order to understand why it took so long to be taken seriously. And, what made him change his mind after 2 years? Was it simply your persistence, or did you change your approach?

I wonder, would the doctor have taken notice sooner if you had performed the Epworth test yourself on your brother in law, and showed the doctor the results?

TechJungle.

Wulfman... wrote:

JQLewis wrote: I can't think of an issue where the knowledge of patients here would be more important than in warning people about the dangers of getting stuck with a brick.

If you could just convince the manufacturers to quit making "bricks" (non-data-capable CPAPs), that would be a huge leap in the right direction.

kind of a chicken and an egg situation, or maybe field of dreams...

if enough people are warned off of bricks to refuse them, then the dme's will quit buying them, and the mfgrs will quit making them.

as long as the bastard DMEs are wanting the cheapest thing possible to foist off on their victims, the mfgrs will fill those open POs.

palerider wrote:

Wulfman... wrote:

JQLewis wrote: I can't think of an issue where the knowledge of patients here would be more important than in warning people about the dangers of getting stuck with a brick.

If you could just convince the manufacturers to quit making "bricks" (non-data-capable CPAPs), that would be a huge leap in the right direction.

kind of a chicken and an egg situation, or maybe field of dreams...

if enough people are warned off of bricks to refuse them, then the dme's will quit buying them, and the mfgrs will quit making them.

as long as the bastard DMEs are wanting the cheapest thing possible to foist off on their victims, the mfgrs will fill those open POs.

But, if those bastard DMEs didn't have the option to ORDER the cheapest "bricks", they then couldn't foist them off on their victims.
As we've discovered, most of the "internals" of the CPAP machines by the various manufacturers are identical. The main differences is in the programming. From a production standpoint, it's more expensive (I'm presuming) to have numerous models than to have only ONE model that does everything. They could offer the higher-end models for the same prices as the lower-end models if they would cut the number of models they offer.
Been saying this for years.

Philips/Respironics and ResMed..........ARE YOU LISTENING????????


Den

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One of the keys to publicity is the opportunity to make money. It's like the nicotine patch -- when it went to over-the-counter from prescription, all of a sudden there were commercials everywhere for it. And yes, the commercials and ads are for specific products, but they also repeat over and over the powerful message that you CAN quit smoking and you SHOULD quit smoking.

In my town the local DME is advertising on the radio (low budget ) that they have the at-home apnea screening device and that you should ask your doctor if you should be tested. That's the sort of thing that gets people thinking.

I think that a huge place that people go is to the mayo clinic site and other high-reputation health sites. If there information could be made better, that would be a big win (for them, too.)

There is one factoid that I didn't see anywhere but here -- nocturia. That if you are waking up multiple times per night and producing large amounts of urine over the night and hit morning dehydrated, THAT is a huge warning flag. Even bigger than tiredness, even bigger than snoring. THAT is the information that is going to get in a chunk of people who are not having the other symptoms that lots of people know about, too. (That's something that should be measured in sleep studies, too. When I had my sleep study and needed to be unhooked from the equipment 3 times during the night to go pee, the tech assured me that every hour is pretty common. They should put a "hat" on the toilet and measure the total amount of urine that the patient produces per hour, just like the number of events per hour.)

Wulfman... wrote:But, if those bastard DMEs didn't have the option to ORDER the cheapest "bricks", they then couldn't foist them off on their victims.

then people would be sent out with resMART machines, or other crap. just because resmed and respironics takes a the high road doesn't mean that others will follow.

palerider wrote:

Wulfman... wrote:But, if those bastard DMEs didn't have the option to ORDER the cheapest "bricks", they then couldn't foist them off on their victims.

then people would be sent out with resMART machines, or other crap. just because resmed and respironics takes a the high road doesn't mean that others will follow.

That's also called a "free market economy". P/R and ResMed would then lower their prices to something more affordable and would try to compete with the other manufacturers. We've known for years that the dollars worth of parts in these machines is way out of proportion with what they charge for them.


Den

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Wulfman... wrote: We've known for years that the dollars worth of parts in these machines is way out of proportion with what they charge for them.

I googled up a site that tears things down and estimates the parts cost, and both the prs1 and s9 machines came in the neighborhood of 150ish.usd.

of course, that won't pay for anybodies private jet.

I am absolutely certain that a couple of years (!) before I went in to be formally diagnosed I heard a PSA on the radio about the symptoms of OSA. And I said to my DH, "Gee, it sounds like I might have sleep apnea." And he said, "Yes, it does."

And then I did nothing more until I fell asleep behind the wheel two years later, but that's another story. My point is that there has been been outreach in the past, and it was pretty effective in educating me about the symptoms. Getting me to act on my knowledge took a little extra push...

Drowsy Dancer wrote:I am absolutely certain that a couple of years (!) before I went in to be formally diagnosed I heard a PSA on the radio about the symptoms of OSA. And I said to my DH, "Gee, it sounds like I might have sleep apnea." And he said, "Yes, it does."

And then I did nothing more until I fell asleep behind the wheel two years later, but that's another story. My point is that there has been been outreach in the past, and it was pretty effective in educating me about the symptoms. Getting me to act on my knowledge took a little extra push...

Some people will require more of a push, some less. Some methods of pushing are more effective, some less. It seems to me that right now the quality and quantity of such efforts is insufficient to the scale of the problem. We need more town criers with louder, more persuasive voices.

The key would be to reach a person when they are least distracted.
I would like to put posters in public rest rooms, pointing out the link between apnea and nocturia,
or deadly driving microsleep events--a good place for an easy link to online information about apnea.
Maybe even 'glamour' shots of cpap in use; actually, there could be a lot more positive images online.
Remember planking, and numerous other memes--think "papping".