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Patients Stepping Up to Help Uneducated Masses
There is so much ignorance of sleep apnea. We here at this forum are the lucky few who actually know a little bit more than the average Joe about the condition. But every day, thousands of people are being diagnosed with sleep apnea and walking into the mine field that we all have experienced. My question is what can we as the educated patients do for these newcomers, and how do we reach them in time?
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Replies to This Discussion
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Permalink Reply by 99 on
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we need to put liturature together just a small pack for a doctors conference make sure that the contents are unified and that those affilliated to us are informed to mayke a coordinated resposone at doctors conferecnes
stall manned by celebs sponsers can be the likes of resmed FP resperonics etc
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first stop an impressive authoraive sounding
name.org
that should be first
we could run a competion to find a name of clarity meaning authoriy and of course world recognition
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can we lobby these people and educate them
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Date: Fri, 4 Dec 2009 10:44:29 +0100
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To: trw99@live.co.uk
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Permalink Reply by Russ Burt on
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If you're going to turn this advice in to an article it would be vital to point out that most of it applies to america only. Those of us around the world would get lost following some of it.
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you have
got to start somewhere
why not start with AMERICA
Russ Burt said:If you're going to turn this advice in to an article it would be vital to point out that most of it applies to america only. Those of us around the world would get lost following some of it.
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Why not start with a guide which favours ALL countries, not just one? Apnoea does not respect location.
99 said:you have
got to start somewhere
why not start with AMERICA
Russ Burt said:If you're going to turn this advice in to an article it would be vital to point out that most of it applies to america only. Those of us around the world would get lost following some of it.
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Permalink Reply by Jeffrey Donaldson on
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If I encounter anyone who I suspect has sleep apnea, or anyone that thinks that they do, I'll definately try to educate them on what sleep apnea is. I encourage them to get a sleep study done and what to expect while having one. I have already done this for a coworker who was bugged by his wife for years about his breathing at night, or lack of. He is now on C-Pap and he is doing much better. I have another coworker who's new husband is suspected of having sleep apnea. Because of my "education" of her, she in turn convinced him to seek out a study and is in the process now of getting a study done. I've been on C-Pap myself for 15 years, so I guess I can be taken seriously enough to educate others about sleep apnea.
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its all about the art of persuasion
sometimes being blunt works sometimes it does not
sometimes sutlety works sometimes it does not
if more than one person uses the art of persuasion
what does the saying say
if you sling enough mud some will stick
excuse the mud metaphore
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This is an awesome site for information and in finding others that may have the same issues that you have.
I was very surprised to find out that I have sleep apnea. My husband has severe and I knew this long before he had a study done. I would watch his chest rise and fall with no air exchange and watch him gasp about every 4 to 5 minutes. When he had his sleep study the tech hooked him up and went for a smoke break after confirming all the settings. when she came back about 20 minutes later he had already stopped breathing well.. during the 20 minutes, he only took a few oxygenated breaths in the 20 minutes. They said his oxygen dropped in the 60s.. They put him on a cpap in the first hour of the study. The next day they found a place that would provide a cpap immediately. they didnt want him to sleep another time without it. I wasnt so lucky.. when I had my sleep study I couldnt sleep very well. I did fall alseep but not restful. I figured I didnt have it since they didnt wake me up and put a cpap on me. They always schedule a second sleep study in case it is needed. Since I didnt hear anything back in the two week period I called and cancelled the study and told them that I must not have it since they didnt call me and I wasnt going to pay another co-pay for a second sleep study. The doctor called me back in about 30 minutes quite upset with me and told me I had moderate sleep apnea and that it didnt show up until the last hour of the study. To go to the second study.. I did go. I use a quatro full face mask because my husband does.. I started getting a rash all around my nose and mouth where the seal is against my face and believe that it is a moisture type burn. I used a cotton hankie and cut a hole for my nose about 1 inch by 1.5 inches. I put this next to my face now and put the mask over it. This has helped greatly and my face has cleared up. I want to try the remzzzzs ? but dont have the extra money so I attempted to make my own with the handkerchief. This has helped with absorbing moisture.
I would ike to try a nasal mask but I am not sure how that would work since I seem to drool already in the full face mask. I saw one called the breeze that looked comfortable but my provider seems to be stuck on resmed and respair or nothing. I am not having much success with getting an appointment to have a fitting for a mask with the place that has my prescription.
I may buy one from one of the online dealers since they are MUCH cheaper than the home medical supply that has my Rx. anyway..
this is part of my story..
would love to know if anyone has any suggestions.
also..... I have always had sinus congestion .. stuffiness at night until I started using my cpap. I rarely have a stuffy nose but one thing I do often.. is to use the liquid vicks steam inhaler and using a qtip.. put a dab on my filter.. or just draw a liquid line inside my mask.. it smells so good and opens my nose for the night.. has anyone tried this? I dont suggest putting it in the water.
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I would like a copy of it.. how can I get one?
sleepycarol said:Rock,
Mike has a brochure that he sent me in an email that is awesome. Please ask him for a copy!!!
I really feel it would be beneficial to have a link to it somewhere on here so it could be downloaded and we could give them out. It would help educate people, in my opinion.
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Permalink Reply by Donna B. on
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I know this post is a few months old. I was thinking about bumper stickers the other day. How many people have OSA but don't know where to go for help. (We all know the Doc's office is NOT the place, they simply do not have the time to answer our questions on a daily basis) How about:
Have OSA? Got questions? Get SLEEPGUIDE.COM !
Honk if you're a Hosehead- Join us at SLEEPGUIDE.COM
Got CPAP? (Is the GOT trademarked?, i.e. Got Milk? etc.)
Got Sleep?
A,B,CPAP, discuss yours at SLEEPGUIDE.com
What a great way to spread awareness. I'm sure there are better ideas out there, these came to mind the other day while I was sitting in traffic.
Donna B. ;)
sleepycarol said:This site rocks and is helping educate those that are having problems with their therapy to find ways of overcoming those issues.
Mike, have you though about posting a link here where people could download your brochure to give to the health care professionals in their area and to those that are affected by sleep apnea or think they may have sleep apnea. I felt it was useful when I used your brochure to give out to friends that I knew that would benefit from this site and to some of the local doctors. If others would do the same it would help spread the message.
What happened to the bumper sticker idea? Is it still in the works?
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