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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 carole debeer on
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I do think the word is getting around...I have seen various reports on tv shows...and I think that is an excellent way...the show "The Doctors" has run a segment....I think if we bombard the networks with questions we might get more cooverage.
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Permalink Reply by Dee on
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I couldn't find SleepGuide on Facebook....that would be the first thing I would do. There's one called Sleep Apnea that has over 1900 members, but this forum is (IMO) more active and more informative, so I would like to see a SleepGuide FB page.
I have a website for women and once I was dx (2 yrs ago, I think), I added this page to my site: http://www.minniepauz.com/sleepapnea . It still needs a lot of work but I've got a lot of issues to cover for women in middle age!! I do have SleepGuide linked on there though.
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I found out about A.W.A.K.E. through the web. I feel I should have been given information about it from my doctor as soon as I was diagnosed. I think we should have a handout for doctors to give to their patients. I've learned so much from this group and the resources listed on the website. This should hep a little. --Janie
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Permalink Reply by Mary Z on
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I believe we should welcome newcomers to the forum and encourage them to ask questions. I try to keep up with new people who have joined- a list is available on the right side of the discussions along with the latest discussions. So many people join who say they have sleep apnea and aren't on any treatment. Also be aware of coworkers and family members and friends who may complain of excessive daytime sleepiness, falling asleep while driving, or early morning headaches, and perhaps get them to take as online test for sleep apnea, or ask questions and get them to go to a doctor, if indicated. If your doctors office has literature, perhaps pick up a few pamphlets to have on hand for those who may need them. We can also be open about our sleep apnea and willing to discuss it's use. Encourage friends or family on CPAP who may be having trouble to continue use of CPAP. Support this group and respond quickly to newcomers questions.
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Permalink Reply by Jan vanNiekerk t SnoringElephant on
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I am in South Africa. There is a support group in Pretoria. I am in the East Rand area, and I am busy setting one up too.
It needs a lot of liasing between the role players.
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Buy finding a class that is sponsored by an AASM lab then the person can go to his Dr. with the wright questions to ask and get the wright testing. And make sure the co. that set up the equipment has Respiratory Therapist to do the education and set up.
Mike Burns RCP.psgt
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Permalink Reply by Kathleen on
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I could use some help in adjusting the pressure on a spare machine I have; it is Respironics Tranquility Bilevel AHP. It doesn't seem to be similar at all to my Respironics Auto Cflex, which I know how to adjust. I'm 7-12 on it. The spare is much too much force. at 15, I think. Not many options re buttons, etc. Thanks so much.
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Frozen face!!
Since my bedroom is the coldest in the house, I get nothing but cold air routed to me, regardless of setting on HC150, keeping hose under covers, etc. The problem is cold air in, cold air out. Do I need to setup an electric (air) heater next to the intake on my cpap machine? I really don't want to heat the entire room. I could setup somewhere else, closer to the forced air duct in another room. ...what we won't go through, eh? I hope there's something simpler that I could do. Many thanks.
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Kathleen, consider buying the "aussie" heated hose. Owners LOVE them.
The Tranquility goes back aways. You might try to see if there is a pdf of the Clinicians Manual at:
http://www.internetage.ws/cpaphelp/manuals/
or
http://www.cpap-supply.com/Articles.asp?ID=130
or http://www.apneaboard.com/CPAP%20Adjustment.htm
Good luck!
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Permalink Reply by Deborah Williams on
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somebody needs to teach the UK Dr's that sleep apnea is from children & adults..i fear for my life if i ever have to go back to the UK...i am going back in for another study 2/8 as i injured myself during my sleep & ended up in the E/R...
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Permalink Reply by sleepycarol on
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Kathleen I am battling similar problems. Most mornings my throat hurts for a while after I get up and it is due to the cold air. I like a warm room to sleep in and would much rather be too hot than have a cool room. But to save on the heat bill, I have lowered our thermostat down to 67 - 68, down from the typical 72 I used in the past.
I don't like having the humidifier turned up as the extra humidity causes me to feel congested and makes my asthma worse.
I don't want to spend the money for the Aussie hose (may try to pick one up in the summer when the bills are cheaper). So it appears I am stuck with the cool air.
Good luck and hope you find a solution.
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I thought the same thing.. I like it cooler at night tho' ..seems everyone sleeps better when it is a little cooler at night. I turned my heat down to 63 during day and 60 at night to save on my electric bill. I would never turn my humidifier/heater on..but NOW since we have been in a deep freeze for over a week..and at night I want the air I breath to be warmer...so I keep it on. I have been sleeping that way for a month or so now but one night I turned it off, like i used to keep it, and noticed a big difference. The thing I noticed was that the next morning my breathing was worse.. I woke up and felt like I was wheezing..felt like it took me about an hour to remember how to breath normally again. This happened to me a lot during the summer and I never put the two together. NOW, I keep my setting on 3-4 and I wake up breathing better. I have stage 3 emphysema..I have found I breath a LOT better..don't wheeze as much..am not struggling to breath.So I imagine the two disorders are similar in a lot of ways. You might try this just to see if you notice the same thing.
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