Last night I buried a post into a very interesting post regarding a study of CPAP machine efficacy.
I'm a little regretful that I didn't post as a new post, because I think the point I was tossing around is something that deserves a stage of its own. It may be the height of chutzpah to repost your own post, but I'll chance it to save you the trouble of researching it. (Please see the post that follows this).
I've been thinking a lot about ways to stimulate thought and conversation about our collective problems, and what are the most effective ways to address the problems.
There is a common thread running through much of the posts here, IMHO. Specifically, many of us have overcome tremendous challenges to get appropriate diagnosis and treatment, including ongoing care. And those are the lucky ones of us who have managed to crawl out of our sleep deprived fog (and depression?) far enough to reach the help of this message board. But, there are so many people who have been left behind. There are a lot of people who are barely making it, or who already have thrown in the towel in discouragement. Many others have never been diagnosed.
My question is what can we do as a global community to address this public health issue? It costs our society literally billions of dollars to treat the sequelae of a problem that afflicts so many. The quality of life in so many is compromised so dramatically. Can we do better than we have so far?
One of my very favorite quotes was from the brilliant Henry David Thoreau:
“There are a thousand hacking at the branches of evil to one who is striking at the root.”
IMHO, the root is: sleep problems do not get the level of attention they deserve!
Everyone has heard of cholesterol monitoring, and well baby checkups, and annual pap smears, and sunblock, and breast exams, etc. Docs almost robotically check for compliance in monitoring this stuff routinely and are reasonably aggressive about treating a suspicous mammogram or spiraling glucose numbers.
I wonder if this post could be a catalyst to stimulate ideas as to what we as a community can do to make our health issue front burner in a similar way. We are amazingly creative at finding Lab Rat fixes for equipment issues, and many other troublesome issues. We are unfailingly supportive of others needing helpful hints on software, DME, and all manner of other things. In short, we do a bang up job of hacking at the branches of evil. I am hoping that the Big Brained community here might discuss the ways we can bring our problem to prominence in the eyes of the medical community and indeed the population in general.
I know that there are very fine organizations and websites linked here and elsewhere (e.g. A.W.A.K.E.). But what can each of us do, as individuals, in a grassroots effort to W.A.K.E. U.P. the people that need to know the severity and breadth of this problem?
I for one will be soliciting the local medical school (rhymes with Hanford) to allow me to present a noon time lecture to the medical students. I would hope to do this on an ongoing annual basis. I will also be contacting the local newspapers editorial sections with a "public service announcement" to get the matter more publicity.
Anyway, thanks for any and all ideas that may come from this post. I do hope that others may join in with suggestions. I was hosting my own personal Pity Party for too long, so I will leave you with the following iconic quote from Network:
All I know is first you've got to get mad. You've got to say, "I'm a human being. God Dammit, my life has value." So, I want you to get up now. I want all of you to get up out of your chairs. Get up. Go to your windows, open your windows, and stick your head out, and yell, "I'm as mad as hell and I'm not going to take this anymore!" Things have got to change my friends. You've got to get mad. You've got to say, "I'm as mad as hell and I'm not going to take this anymore!"
What lies ahead? And what to do about it.
What lies ahead? And what to do about it.
Dead Tired? Maybe you're sleeping with the Enemy.
Know Your Snore Score.
Know Your Snore Score.
Posted: Tue Jan 16, 2007 2:34 am Post subject: Delete Spam Reply with quote Edit/Delete this post
greyhound wrote:
I hope DrBandage reads this and can interpret it (I know s/he's not a pulmonary specialist) for the rest of us.
Greyhound -
You're very kind to mention my name. I will certainly take a long look at the articles. I can offer my opinion as a physician, but I know there are lots of folks here that are "scary smart" when it comes to this type of technical information.
Probably a strong suit of medical training IMHO is the devotion to the study of how to evaluate the "truthiness" of medical literature. Journal clubs were and are a key part of medical school and residency. There is indeed a very stringent scientific approach that is applied to the evaluation of research papers. Extensive knowledge of statistical theorems is a must, as is critical thinking.
But, having said that, I will quickly acknowledge that sleep medicine is very much ignored in basic medical training. It's so sad, because as part of training in med school and internship we are required to deliver babies, assist in surgery, and all manner of things that we may never need to do. But, everybody needs to sleep well to be well. (I just made that up, but I like it!).
So how is it that something so essential to good health and happiness is so underappreciated, underdiagnosed and undertreated? Beats me. It's not like we were lazy in our training (don't get me started). But I really think there should be far more emphasis on such things as nutrition and sleep.
Sleep science is truly in its infancy as -SWS has pointed out so eloquently (among many, many other things!). Even one generation ago, there was no such thing as CPAP, while surgery has been practiced for centuries! Even one generation ago, there was no internet message board like this to help others achieve what all of us need and deserve in regards to what so many take for granted.
The medical community responds, albeit painfully slowly, to the public's demand to know. (E.g. alternative medicine courses are now a vital and growing part of virtually all med school curriculums.) Medical and civic leaders will look back one day on this neglected issue and recognize that it is indeed a very complex health issue absolutely riddled with problems in just about every facet imaginable.
You certainly never miss it until it's gone, but when it's gone you're in deep doo-doo. Even as a physician, I have been severely challenged to get this issue under control and reclaim my life. It is heart wrenching to think about the challenges facing others who may not have the advantages that I have. This is an equal opportunity ailment, so you can bet that the poor and the undereductated members of our society are completely adrift. I shudder to think about how difficult compliance and progress has been even with the resources available to me, both as a physician and as an avid reader of this board.
People like Rested Gal, and Mile High Sleeper, and so many others have helped save the quality of life, and indeed the life itself for so many of us. Those who share so willingly are this century's version of a cyber Mother Teresa figure. I am speaking quite literally when I assert that people such as these save innumerable lives, prevent early death, and all the horrible morbidities that accompany untreated sleep disturbances. How many people would have been "lost to follow up" as we doctors say without the Collective Wisdom that this site and others makes available to all of us? Why didn't my visit with several Sleep Docs yield even one mention of the support groups that are available and boards such as this?
Just as vaccines pay tremendous dividends for the cost involved, "word of mouth" through the online community offers extraordinary opportunities for improving the lives of others in our society, for the cost of a keystroke!
I'm starting to feel a rant coming on!
Anyway, paraphrasing the bottom line: no one makes a bigger mistake than he who does nothing, because he can only do a little.
This problem is not going away, and it will continue to claim lives and quality of life until it is given the attention that it deserves. Send "letters to the editor", talk to your friends about this disease. Tell your doctor about this board. Complain to Patient Relations if your diagnosis and treatment were inadequate. Notify regulatory agencies about quality of care issues. Elevate the definition for community Standard of Care for sleep deprivation and its ilk.
Information is power, and the status quo prevails until there is enough critical mass to change things. Just as people "never" spoke powerfully about such issues as mental illness, abuse by the clergy, domestic violence, child and elder abuse, our issue will be only our own until we own it.
<End Rant>.
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, Power
greyhound wrote:
I hope DrBandage reads this and can interpret it (I know s/he's not a pulmonary specialist) for the rest of us.
Greyhound -
You're very kind to mention my name. I will certainly take a long look at the articles. I can offer my opinion as a physician, but I know there are lots of folks here that are "scary smart" when it comes to this type of technical information.
Probably a strong suit of medical training IMHO is the devotion to the study of how to evaluate the "truthiness" of medical literature. Journal clubs were and are a key part of medical school and residency. There is indeed a very stringent scientific approach that is applied to the evaluation of research papers. Extensive knowledge of statistical theorems is a must, as is critical thinking.
But, having said that, I will quickly acknowledge that sleep medicine is very much ignored in basic medical training. It's so sad, because as part of training in med school and internship we are required to deliver babies, assist in surgery, and all manner of things that we may never need to do. But, everybody needs to sleep well to be well. (I just made that up, but I like it!).
So how is it that something so essential to good health and happiness is so underappreciated, underdiagnosed and undertreated? Beats me. It's not like we were lazy in our training (don't get me started). But I really think there should be far more emphasis on such things as nutrition and sleep.
Sleep science is truly in its infancy as -SWS has pointed out so eloquently (among many, many other things!). Even one generation ago, there was no such thing as CPAP, while surgery has been practiced for centuries! Even one generation ago, there was no internet message board like this to help others achieve what all of us need and deserve in regards to what so many take for granted.
The medical community responds, albeit painfully slowly, to the public's demand to know. (E.g. alternative medicine courses are now a vital and growing part of virtually all med school curriculums.) Medical and civic leaders will look back one day on this neglected issue and recognize that it is indeed a very complex health issue absolutely riddled with problems in just about every facet imaginable.
You certainly never miss it until it's gone, but when it's gone you're in deep doo-doo. Even as a physician, I have been severely challenged to get this issue under control and reclaim my life. It is heart wrenching to think about the challenges facing others who may not have the advantages that I have. This is an equal opportunity ailment, so you can bet that the poor and the undereductated members of our society are completely adrift. I shudder to think about how difficult compliance and progress has been even with the resources available to me, both as a physician and as an avid reader of this board.
People like Rested Gal, and Mile High Sleeper, and so many others have helped save the quality of life, and indeed the life itself for so many of us. Those who share so willingly are this century's version of a cyber Mother Teresa figure. I am speaking quite literally when I assert that people such as these save innumerable lives, prevent early death, and all the horrible morbidities that accompany untreated sleep disturbances. How many people would have been "lost to follow up" as we doctors say without the Collective Wisdom that this site and others makes available to all of us? Why didn't my visit with several Sleep Docs yield even one mention of the support groups that are available and boards such as this?
Just as vaccines pay tremendous dividends for the cost involved, "word of mouth" through the online community offers extraordinary opportunities for improving the lives of others in our society, for the cost of a keystroke!
I'm starting to feel a rant coming on!
Anyway, paraphrasing the bottom line: no one makes a bigger mistake than he who does nothing, because he can only do a little.
This problem is not going away, and it will continue to claim lives and quality of life until it is given the attention that it deserves. Send "letters to the editor", talk to your friends about this disease. Tell your doctor about this board. Complain to Patient Relations if your diagnosis and treatment were inadequate. Notify regulatory agencies about quality of care issues. Elevate the definition for community Standard of Care for sleep deprivation and its ilk.
Information is power, and the status quo prevails until there is enough critical mass to change things. Just as people "never" spoke powerfully about such issues as mental illness, abuse by the clergy, domestic violence, child and elder abuse, our issue will be only our own until we own it.
<End Rant>.
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, Power
Last edited by drbandage on Mon Jan 22, 2007 8:53 pm, edited 1 time in total.
Dead Tired? Maybe you're sleeping with the Enemy.
Know Your Snore Score.
Know Your Snore Score.
-
DreamStalker
- Posts: 7509
- Joined: Mon Aug 07, 2006 9:58 am
- Location: Nowhere & Everywhere At Once
I was thinking of drafting a power point presentation about sleep apnea and asking our HR folks to sponser it as part of their health workshops.
Anyone have some copyright free animated graphics for showing how apnea occurrs and how it is treated? ... sort of like the cool ones that ResMed has on their web site.
Anyone have some copyright free animated graphics for showing how apnea occurrs and how it is treated? ... sort of like the cool ones that ResMed has on their web site.
President-pretender, J. Biden, said "the DNC has built the largest voter fraud organization in US history". Too bad they didn’t build the smartest voter fraud organization and got caught.
[quote="DreamStalker"]I was thinking of drafting a power point presentation about sleep apnea and asking our HR folks to sponser it as part of their health workshops.
Anyone have some copyright free animated graphics for showing how apnea occurrs and how it is treated? ... sort of like the cool ones that ResMed has on their web site.
Anyone have some copyright free animated graphics for showing how apnea occurrs and how it is treated? ... sort of like the cool ones that ResMed has on their web site.
Dead Tired? Maybe you're sleeping with the Enemy.
Know Your Snore Score.
Know Your Snore Score.
All I have to say is THANK YOU, drB!!!! And thank you DreamStalker!!!drbandage wrote:I for one will be soliciting the local medical school (rhymes with Hanford) to allow me to present a noon time lecture to the medical students. I would hope to do this on an ongoing annual basis. I will also be contacting the local newspapers editorial sections with a "public service announcement" to get the matter more publicity.
This is one thread that I hope spawns plenty of other great ideas!
_________________________________________________________________________
Information about the continuation or sequel to this thread:
On page 5 of this thread I wrote:I just wanted to stop in and complement everybody on the positive threads of change that you are weaving on this message board---starting with this thread, the first of a beautiful tapestry currently being woven by many others here! I am so impressed, and so moved that I finally have a closing signature line.
I consider it a public service announcement of sorts! Others will find our important threads of change interspersed throughout this message board as they read the signature line in my posts. I hope we can keep the current of these two threads (the other thread) surfacing to the top again and again: The Continuation of This Thread Can Be Found Here
Congratulations to everyone here who is helping to weave such a very beautiful tapestry of threads on this message board! Please keep up the good work in the current thread shown above. I also refer to that thread as "The Challenge" in my own signature line below. This initial thread is what I will always think of as "Our Hope" and that is reflected in my signature line below as well. This thread is what I Hope to be a very historic thread some day!
Last edited by -SWS on Mon Jan 22, 2007 6:47 pm, edited 3 times in total.
-
Mile High Sleeper
- Posts: 275
- Joined: Sun Dec 18, 2005 5:48 pm
- Location: Colorado
- Contact:
distributing sleep apnea information
Right on, dr bandage!
Anyone care to draft and post a letter to doctors (that we can use) to request they check their patients for sleep apnea, including warning signs/symptoms? In my case, it would go to my PCP, pulmonologist, cardiologist, ENT, and eye doctor.
To file a complaint about poor care with JCAHO, see the end of the light bulb/our collective wisdom article on Safety and Incidents.
Send your suggestions for improvements up the chain of command at your DME and let us know if anything happens.
PM me if you want a meeting design for a presentation for an AWAKE group. It involves having the attendees read and discuss several of the articles in our collective wisdom.
drbandage, can you make your medical school presentation available to other doctors? The doctor who wrote my sleep study report teaches at a medical school.
Computer and organizational gurus, how about forming an online action group, similar to moveon.org, but without a political or partisan agenda? An action-line forum where we can share ideas and support for widely sharing information about sleep apnea for those who need it?
Who knows how to enlist the manufacturers and sellers? If they have the quality and integrity of cpap.com, they could be a powerful ally.
Anyone care to draft and post a letter to doctors (that we can use) to request they check their patients for sleep apnea, including warning signs/symptoms? In my case, it would go to my PCP, pulmonologist, cardiologist, ENT, and eye doctor.
To file a complaint about poor care with JCAHO, see the end of the light bulb/our collective wisdom article on Safety and Incidents.
Send your suggestions for improvements up the chain of command at your DME and let us know if anything happens.
PM me if you want a meeting design for a presentation for an AWAKE group. It involves having the attendees read and discuss several of the articles in our collective wisdom.
drbandage, can you make your medical school presentation available to other doctors? The doctor who wrote my sleep study report teaches at a medical school.
Computer and organizational gurus, how about forming an online action group, similar to moveon.org, but without a political or partisan agenda? An action-line forum where we can share ideas and support for widely sharing information about sleep apnea for those who need it?
Who knows how to enlist the manufacturers and sellers? If they have the quality and integrity of cpap.com, they could be a powerful ally.
_________________
| Mask: Ultra Mirage™ Full Face CPAP Mask with Headgear |
| Additional Comments: SleepZone heated hose, PAPillow, bed wedge, Grossan Hydro-Mate, SnuggleHose, AIEOMed Everest w/ hh, battery pack, DC cord, PadACheek, Headrest pillows |
Mile High Sleeper Gal
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
Problems cannot be solved at the same level of awareness that created them. - Albert Einstein
Do not wait for leaders; do it alone, person to person. - Mother Teresa
I have had thoughts along these lines myself, though much more modest. I was planning on writing a letter to my old Doctor (the one who poo-poo'd me and told me I was a hypochondriac and or lazy when I complained of fatigue, brain fog, hypersomnia, etc.) I was going to forward it to my Gynecologist, neurologist, etc.
Perhaps I will write up my experiences as an article and send it to some local publications, or even see if I can sell it to a national woman's mag.
Starting a collection of power-points, example letters, etc. here seems like a good idea too.
Perhaps I will write up my experiences as an article and send it to some local publications, or even see if I can sell it to a national woman's mag.
Starting a collection of power-points, example letters, etc. here seems like a good idea too.
Re: distributing sleep apnea information
[quote="Mile High Sleeper"]Right on, dr bandage!
drbandage, can you make your medical school presentation available to other doctors? The doctor who wrote my sleep study report teaches at a medical school.
drbandage, can you make your medical school presentation available to other doctors? The doctor who wrote my sleep study report teaches at a medical school.
Dead Tired? Maybe you're sleeping with the Enemy.
Know Your Snore Score.
Know Your Snore Score.
I sure hope this continues full steam ahead! I went through three doctors...Primary, Cardiologist, and Neurologist...and they all missed the Apnea. Had to diagnose myself, confirmed at a Sleep Lab, and then had to learn how to obtain the most effective treatment on my own.
Since then I have talked to many folks....family, friends, professionals, and will continue to do so. Some physicians really begin to listen when it is mentioned that their hospital is not following Accreditation Standards. I always mention this site as an excellent resource.
Most newspapers have an Editorial section, and anyone can send something to their local paper, although not all are printed. A plea for them to publish something in the interest of the public might help. Our local paper also solicits 'guest' articles, something I have started a draft for. I am interested in including related problems, but in researching the medical problems that stem from Sleep Apnea, it seems that, at this time at least, not all of the conditions are known.
Who knew that about 80% of folks with Fibromyalgia or Cluster Headaches also had Sleep Apnea? Not me, and apparently not many in the medical community either, it would seem.
I'm gonna keep track of this thread. Thank you, Drb for starting this!
Since then I have talked to many folks....family, friends, professionals, and will continue to do so. Some physicians really begin to listen when it is mentioned that their hospital is not following Accreditation Standards. I always mention this site as an excellent resource.
Most newspapers have an Editorial section, and anyone can send something to their local paper, although not all are printed. A plea for them to publish something in the interest of the public might help. Our local paper also solicits 'guest' articles, something I have started a draft for. I am interested in including related problems, but in researching the medical problems that stem from Sleep Apnea, it seems that, at this time at least, not all of the conditions are known.
Who knew that about 80% of folks with Fibromyalgia or Cluster Headaches also had Sleep Apnea? Not me, and apparently not many in the medical community either, it would seem.
I'm gonna keep track of this thread. Thank you, Drb for starting this!
Bamalady, thanks for excellent suggestions. I am not so surprised to hear that your diagnosis was missed. As physicians, we often are reminded to "rule out" worse case scenarios when a particular symptom arises. If one can be satisfied that, for instance, your thundering morning headaches are not as a result of brain tumor, then we all rejoice. "Not sure what is causing it, hard to say, but suffice to say our MRI shows no evidence of cancer, Thank God."Bamalady wrote:I sure hope this continues full steam ahead! I went through three doctors...Primary, Cardiologist, and Neurologist...and they all missed the Apnea. Had to diagnose myself, confirmed at a Sleep Lab, and then had to learn how to obtain the most effective treatment on my own.
Since then I have talked to many folks....family, friends, professionals, and will continue to do so. Some physicians really begin to listen when it is mentioned that their hospital is not following Accreditation Standards. I always mention this site as an excellent resource.
Most newspapers have an Editorial section, and anyone can send something to their local paper, although not all are printed. A plea for them to publish something in the interest of the public might help. Our local paper also solicits 'guest' articles, something I have started a draft for. I am interested in including related problems, but in researching the medical problems that stem from Sleep Apnea, it seems that, at this time at least, not all of the conditions are known.
Who knew that about 80% of folks with Fibromyalgia or Cluster Headaches also had Sleep Apnea? Not me, and apparently not many in the medical community either, it would seem.
I'm gonna keep track of this thread. Thank you, Drb for starting this!
(Next patient, please, I am already running an hour and a half late, and I didn't get lunch today, and I will be here until 8:00 pm tonight!)
If you think this is far fetched, think again. It happened to me three years ago when I went to my PMD complaining of "thundering morning headaches" that were so bad they awakened me from sleep. MRI showed nothing (insert Doctor joke here), so we were relieved to know that as morning HA is a cardinal sign of brain cancer. (I am not obese, and snore very minimally, and I guess that is enough to rule out OSA. Sure I complained of being overly tired, but I was working overly long hours. Who wouldn't be? Right?)
Anyway, back to the subject at hand. You know how resolutions, diet plans, commitments and most everything else are easier to keep and harder to break if they are made known to friends or family? Please think about making a public (after all, it's just us HoseHeads!) pledge on this site to inspire yourself and others!! Many people volunteer or donate to charity. This would be something that might induce others to do the same!!
What could you do to be part of the process of making this humongus, often devestating ailment better known to all? Remember, the root of the problem as it afftects our society largely revolves around lack of awareness.
Step right up to the microphone, don't be shy!! If Mile HIgh Sleeper and the other Heavy Hitters can do it, we all could make some public pledge. It's inspirational! Rah, rah, rah!!!':lol:'
Dead Tired? Maybe you're sleeping with the Enemy.
Know Your Snore Score.
Know Your Snore Score.
-
Sleepless in St. Louis
- Posts: 254
- Joined: Sun Mar 19, 2006 11:12 am
- Location: St. Louis
I also think that part of the problem, and therefore an opporunity for education is that this ailment has somewhat of a stigna attached to it. I mean that some perceive that it's a problem that is caused solely by excess weight and people not taking proper care of themselves. Once you start talking weight you're tapping into a nerve and complicated self image issues that make some people feel ashamed that they have this problem i.e. OSA. I have a friend who seemed genuinely ashamed to admit to me that her husband has OSA and has to use "this weird breathing machine" at night. Part of the challenge of what you folks are suggesting is to bring this issue into the light and let folks know that having OSA is nothing to be ashamed of along the lines of not being ashamed to admit that you have migraine headaches or name your chronic disease. It's a big P.R. challange. People like Rosie are bring the issue to the forefront. Maybe it will take a very high profile person to get on the bandwagon or a cpap product placement in the next Hollywood block buster. Don' hold your breath for that one. Ha.
Sucking Wind since Feb '06.
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
drb...thank you, thank you for starting this thread.
I very much liked your plan to:
"will be soliciting the local medical school (rhymes with Hanford) to allow me to present a noon time lecture to the medical students. I would hope to do this on an ongoing annual basis."
You're in a unique position to incorporate firsthand experience along with credibility as an M.D. in a presentation to med students.
If you cause even a few of them to look at "sleep" differently and become proactive "OSA-seeker-outers" in their future practices, you'll have accomplished wonders!
Already people are expressing good ideas about contacts to newspapers. Hope more good ideas keep popping up here!
I very much liked your plan to:
"will be soliciting the local medical school (rhymes with Hanford) to allow me to present a noon time lecture to the medical students. I would hope to do this on an ongoing annual basis."
You're in a unique position to incorporate firsthand experience along with credibility as an M.D. in a presentation to med students.
If you cause even a few of them to look at "sleep" differently and become proactive "OSA-seeker-outers" in their future practices, you'll have accomplished wonders!
Already people are expressing good ideas about contacts to newspapers. Hope more good ideas keep popping up here!
ResMed S9 VPAP Auto (ASV)
Humidifier: Integrated + Climate Control hose
Mask: Aeiomed Headrest (deconstructed, with homemade straps
3M painters tape over mouth
ALL LINKS by rested gal:
viewtopic.php?t=17435
Humidifier: Integrated + Climate Control hose
Mask: Aeiomed Headrest (deconstructed, with homemade straps
3M painters tape over mouth
ALL LINKS by rested gal:
viewtopic.php?t=17435
Hollywood activism
How about we all do a letter writing campaign to the TV show, “Grey’s Anatomy” to encourage the writers to take the opportunity of the story line about Meredith’s snoring to have her explore the possibility if she has sleep apnea.
Of course she would end up not having OSA, but they could educate people about the symptoms, the risks, the sleep study, etc.
I am actually quite serious here (even though we are probably to late to affect the story line at this point) because in the 80s and early 90s there was a concerted effort by a couple of non-profit groups to meet with TV writers and producers in Hollywood to get socially relevant issues into popular TV shows. They had a significant influence and the shows got all kinds of kudos for being “real”.
How about “House” – he could have a patient with a series of common ailments we all know about and have all their tests not lead to the possible “scary” diagnosis of a brain tumor from the horrible morning headaches, a heart condition from the sudden awakening in the middle of the night with a rapid heartbeat and feeling faint, the sleepiness so bad while they are driving they couldn’t keep their eyes open…etc., etc.
Anyone have any connections with writers or producers?
…a little Hollywood activism.
Of course she would end up not having OSA, but they could educate people about the symptoms, the risks, the sleep study, etc.
I am actually quite serious here (even though we are probably to late to affect the story line at this point) because in the 80s and early 90s there was a concerted effort by a couple of non-profit groups to meet with TV writers and producers in Hollywood to get socially relevant issues into popular TV shows. They had a significant influence and the shows got all kinds of kudos for being “real”.
How about “House” – he could have a patient with a series of common ailments we all know about and have all their tests not lead to the possible “scary” diagnosis of a brain tumor from the horrible morning headaches, a heart condition from the sudden awakening in the middle of the night with a rapid heartbeat and feeling faint, the sleepiness so bad while they are driving they couldn’t keep their eyes open…etc., etc.
Anyone have any connections with writers or producers?
…a little Hollywood activism.
_________________
| Humidifier: HC150 Heated Humidifier With Hose, 2 Chambers and Stand |
| Additional Comments: 2 yrs as of Dec. 17! 2L of O2, titrated 10, use Bipap 11.5/7.5 Flex 2, backup M series BiPap Auto, Hybrid, UMFF, decapitated Aura |
[quote="Sleepless in St. Louis"]I also think that part of the problem, and therefore an opporunity for education is that this ailment has somewhat of a stigna attached to it. I mean that some perceive that it's a problem that is caused solely by excess weight and people not taking proper care of themselves. Once you start talking weight you're tapping into a nerve and complicated self image issues that make some people feel ashamed that they have this problem i.e. OSA. I have a friend who seemed genuinely ashamed to admit to me that her husband has OSA and has to use "this weird breathing machine" at night. Part of the challenge of what you folks are suggesting is to bring this issue into the light and let folks know that having OSA is nothing to be ashamed of along the lines of not being ashamed to admit that you have migraine headaches or name your chronic disease. It's a big P.R. challange. People like Rosie are bring the issue to the forefront. Maybe it will take a very high profile person to get on the bandwagon or a cpap product placement in the next Hollywood block buster. Don' hold your breath for that one. Ha.
Dead Tired? Maybe you're sleeping with the Enemy.
Know Your Snore Score.
Know Your Snore Score.
-
Sleepless_in_LM
- Posts: 183
- Joined: Mon Oct 30, 2006 12:08 pm
- Location: South Central Wisconsin
- Contact:
As I see it, the most important thing everyone on this forum can do is be an open advocate for OSA diagnosis and treatment. Since learning I had OSA, I have talked openly about it at work and found three other individuals within our organization (about 70 people) who also are being treated for OSA. Nobody knew it bacause they never talked about it. Now it is pretty much common knowledge. I have had numerous people in my office to talk to me about it. In the last year I know of two people here that have had sleep studies and several spouses, I think due in large part to my encouragment and openess about it.
There are also some wonderful organizations out there trying to do what we are talking about. In Milwaukee, The SleepWellness Institute has partnered with the widow of Reggie White to form a foundation:
http://www.sleepwell.org/images/reggieWhite.pdf
It appears they have several Dr's lectures on DVD and try to promote awareness, and some other resources.
To do it on a truly national level takes $$'s. I hate that I have to endure endless commercials about Viagra, etc. I know it is because there is money to be made. But why couldn't Resmed or Respironics do the same thing. Educate people on thier products via commercials and encourage them to talk their doctors and get a sleep study.
The biggest problem I see, is if this effort becomes successful, I don't think we have the infrastructure in place to handle a large increase in testing. Here in Southern Wisconsin, it can be 3-6 months to get into a reputable sleep lab. I would hate to see "mini-mall" sleep labs popping up without good techs and knowledge. But that is, I guess, a bridge you cross when you get to it
As for doctors, I am guessing the new ones have some knowledge. My Doc has students in all the time shadowing him (he is just a local small town clinic, but allows UW students to come in.) I think he likes to send them in to see me because he knows I will be very open and honest about it. To date, every student has told me they have some knowledge of OSA, but are full of questions about my treatment and its results. Even the PA students are getting some training in OSA. I think the old time doctors will be harder a nut to crack.
Anyway, that's my 2 cents for now.
There are also some wonderful organizations out there trying to do what we are talking about. In Milwaukee, The SleepWellness Institute has partnered with the widow of Reggie White to form a foundation:
http://www.sleepwell.org/images/reggieWhite.pdf
It appears they have several Dr's lectures on DVD and try to promote awareness, and some other resources.
To do it on a truly national level takes $$'s. I hate that I have to endure endless commercials about Viagra, etc. I know it is because there is money to be made. But why couldn't Resmed or Respironics do the same thing. Educate people on thier products via commercials and encourage them to talk their doctors and get a sleep study.
The biggest problem I see, is if this effort becomes successful, I don't think we have the infrastructure in place to handle a large increase in testing. Here in Southern Wisconsin, it can be 3-6 months to get into a reputable sleep lab. I would hate to see "mini-mall" sleep labs popping up without good techs and knowledge. But that is, I guess, a bridge you cross when you get to it
As for doctors, I am guessing the new ones have some knowledge. My Doc has students in all the time shadowing him (he is just a local small town clinic, but allows UW students to come in.) I think he likes to send them in to see me because he knows I will be very open and honest about it. To date, every student has told me they have some knowledge of OSA, but are full of questions about my treatment and its results. Even the PA students are getting some training in OSA. I think the old time doctors will be harder a nut to crack.
Anyway, that's my 2 cents for now.
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