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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 Linda Majella on
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I agree Mike - sleep apnea seems to be way down on the list of health issues for not only doctors, but Govt, cardiologists, endocrinologists etc. Sleep is such an essesntial part of our well-being. While we are constantly told about excerise and diet our sleep is not on the radar. I think as OSA sufferers the more people we talk to others, anyone about our condition the better. It is through ignorance that people suffer and I for one believe their is no stigma attached to the disorder. Its good to see Philips is running programs in schools - starting to educate children on good sleep. If you know what good, healthy sleep looks ( and sounds like) you will get the message out about what is not normal. Hopefuly the kids take the message home to mom, dad and grandma too.
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I attempted to post a manifesto on the medicine/dentistry parternership yesterday, hopefully it is not in cyber space. The premise was the unique relationship that I have forged between dentistry and medicine, with unique contracts with medical groups and insurance companies. Indeed I was responsible for the insurance companies covering oral sleep appliances and splints for TMD as well ans follow-up and ConeBeam CT. I have taken it so far to create what I think is unprecedented for a dental based sleep program as we have on staff a board certified sleep specialist who reads our home studies. Most people farm this out and I question if they are truly being read by board certified sleep docs. Perhaps they are. This is certainly a labor of love as the money generated is not our motivating factor. Our "clinic without walls" is what I hope to establish as the model for dealing with this difficult population. I have 20 plus years in this arena and am here for patients and doctors to help them grow. We need to be partners. Dentist...MD and Patient. There is a role for all of us. I am glad I chanced upon this site and hope I can provide insight and education....tm
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Permalink Reply by Mary Z on
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tm, welcome. It's refreshing to hear about your efforts. Wish there was such a practice in Norfolk, VA.
Mary Z.
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Thx Mary...There could be such a practice if there was a concerted effort by the dentists and physicians. As we move greater into the abyss of managed care it is critical that doctors not lose sight of patients being patients not a consumer and the doctors are not providers they are doctors. I admit I stole this explaination and wish I could get the whole message out and give credit where due. If you have a group of sleep doctors that you are aware of, pass on my info to them. There are plenty of learning opportunities besides my teaching. I get bombarded by profit driven systems that are directed at dentists and MD's. America is great and capitalism is not a sin. But in my experience if you take care of your patients as you would want your family treated, the money just happens and frankly how much is enough? California is very HMO driven. Kaiser is the granddaddy of managed care and their sleep program is becoming the model. They have made some improvements as the primary care docs are being taken care of and the delegate like crazy. Personally I am trying to emulate the Cleveland Clinic model of cooperative care. Don't compete for patients! My motto is I only compete with myself...what can I do to make my practice better, my family better and myself better. it can be done! I am teaching next in Houston in Sept. at the university. My goal is to start a national conversation re: curing sleep issues. Tthe patient must do their part in terms of weight loss, sleep hygiene etc, but the vast majority of sleep patients are obstructive cases where the patient has a structural dysharmony related to their bite or there is a genetic predisposition ie;small asian females, and large mes, especially black men with poor midface development. This is not a racist thing! Just the facts and many of these issues could be corrected early with identification in childhood. Dentists exasperated many cases by doing extraction and retraction orthodontics. This is not placing blame, but a realization that we know more now. We just need to keep educating the gatekeepers. It can happen and I want to hear from other docs that have developed these partnerships with medicine or those who want to learn how. This can be complicated and many of the "cures" involve surgical treatment including advacing the jaw...not UPPP which is brutal and not that successful long term, but sometimes the only option. If that is all you know. I can demonstrate radiographically the changes we have made iin airway volume..permanant changes in nasal flow just by using an oral appliance(go to the oaysys web site,,,I have no financial interet in this company). So there is hope so please eveyone who reads this keep fighting and be a a voice for change. The squeeky wheel gets the grease! Hang in there, tm
Mary Z said:tm, welcome. It's refreshing to hear about your efforts. Wish there was such a practice in Norfolk, VA.
Mary Z.
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Permalink Reply by Ginny Edmundson on
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I would do almost anything to have an alternative to CPAP for life.
tim mickiewicz d.d.s. said:
Thx Mary...There could be such a practice if there was a concerted effort by the dentists and physicians. As we move greater into the abyss of managed care it is critical that doctors not lose sight of patients being patients not a consumer and the doctors are not providers they are doctors. I admit I stole this explaination and wish I could get the whole message out and give credit where due. If you have a group of sleep doctors that you are aware of, pass on my info to them. There are plenty of learning opportunities besides my teaching. I get bombarded by profit driven systems that are directed at dentists and MD's. America is great and capitalism is not a sin. But in my experience if you take care of your patients as you would want your family treated, the money just happens and frankly how much is enough? California is very HMO driven. Kaiser is the granddaddy of managed care and their sleep program is becoming the model. They have made some improvements as the primary care docs are being taken care of and the delegate like crazy. Personally I am trying to emulate the Cleveland Clinic model of cooperative care. Don't compete for patients! My motto is I only compete with myself...what can I do to make my practice better, my family better and myself better. it can be done! I am teaching next in Houston in Sept. at the university. My goal is to start a national conversation re: curing sleep issues. Tthe patient must do their part in terms of weight loss, sleep hygiene etc, but the vast majority of sleep patients are obstructive cases where the patient has a structural dysharmony related to their bite or there is a genetic predisposition ie;small asian females, and large mes, especially black men with poor midface development. This is not a racist thing! Just the facts and many of these issues could be corrected early with identification in childhood. Dentists exasperated many cases by doing extraction and retraction orthodontics. This is not placing blame, but a realization that we know more now. We just need to keep educating the gatekeepers. It can happen and I want to hear from other docs that have developed these partnerships with medicine or those who want to learn how. This can be complicated and many of the "cures" involve surgical treatment including advacing the jaw...not UPPP which is brutal and not that successful long term, but sometimes the only option. If that is all you know. I can demonstrate radiographically the changes we have made iin airway volume..permanant changes in nasal flow just by using an oral appliance(go to the oaysys web site,,,I have no financial interet in this company). So there is hope so please eveyone who reads this keep fighting and be a a voice for change. The squeeky wheel gets the grease! Hang in there, tm
Mary Z said:tm, welcome. It's refreshing to hear about your efforts. Wish there was such a practice in Norfolk, VA.
Mary Z.
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Permalink Reply by Aaron Taylor on
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It's thought that 1 in 5 Americans have some form of sleep apnea and 80% don't know it. I'm out talking about the "silent killer" every day, trying to raise awareness of the risks of untreated sleep apnea. Man, I can't keep track how many people come up to me and tell me of a family member, friend, loved one that they think has sleep apnea...but refuses to do anything about it. COME ON!! What's the big deal. No drugs, no surgery, no recovery - just flick a switch and breath air. Look, it took me a couple of months to get used to CPAP. And I struggled with the usual issues - mask fit, dry mouth, waking up and not getting back to sleep...but I stuck with it. You now why? Because I couldn't look at my wife and kids and think that I might die and leave them alone all because I didn't stick with it. I'm a sleep coach now, and I'm out with a whole bunch other patients raising awareness, sharing our stories and telling everyone we can about the benefit of treatment. Keep spreading the word, and let's bring this disease out in to daylight, talk about, and inspire people to take control of their health.
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Good post Aaron, there seems to be a stigma about it, but I think it's the next big thing. I literally saved my life, so now I am dedicated to spreading the word and help and supporting others on this site and others and in Australia as well, keep it up.
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Great work Aaron. Terry, there does seems to be a stigma. I think every single person on the forum who is not already dating someone worries about how and when to introduce the CPAP.
No one wants to be perceived as not healthy. Especially when they're dating someone.
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One very important thing to consider is that most of us do not have access to an A.W.A.K.E. or other support group. We get a diagnosis, meet a time or two with a tech at the DME supplier, and that's it. Sites like these are our only support.
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For sure....DME supplier offers no support. At least we can ask questions of others "in the same boat" here!
Jenny Nixe said:One very important thing to consider is that most of us do not have access to an A.W.A.K.E. or other support group. We get a diagnosis, meet a time or two with a tech at the DME supplier, and that's it. Sites like these are our only support.
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