What lies ahead? And what to do about it.

Did anyone know that there is a National Sleep Awareness Week? This year it is March 5-11. Maybe we could have some stuff ready to go by then. In the past, one of those days has been dedicated to Sleep Apnea, although I have not found if that will be so this year.

http://www.sleepfoundation.org/hottopic ... p?secid=15

Drb....Google is usually pretty good about recognizing various important dates. Would you check and see if they have a history of recognizing the Sleep Awareness Week?

Mile High Sleeper wrote:
There are several groups we are trying to reach. We could organize around reaching them. 1) doctors 2) RTs, sleep techs, nurses, DMEs 3) people with sleep apnea 4) the general public 5) the media

Let's keep this going and make it easier for all of us to take action.

Mile High Sleeper -

Your ability to concisely state a "big picture" game plan is just very impressive. Thank you in particular, and all others for helping to keep this project afloat. I believe in it so much, but it's gonna "take a village". You've done so much already with your extraordinary contributions, notably Collective Wisdom.

BTW, you were the FIRST posting that I clicked on when I first Googled "sleep apnea support" several months ago! The fact that you, as a result of your attempts to reach others, are the very reason that I am even here in the first place is so ironic!

Thanks sincerely.
drB

small and final btw: mr. postman just delivered my copy of Phantom of the Night!! I need a nap first, but it's sure winking at me right now! Can't wait.

Add #6 to my list above of groups to reach, per your posts:
sleep apnea professional/support organizations

Mile High Sleeper wrote:Add #6 to my list above of groups to reach, per your posts:
sleep apnea professional/support organizations

MHS - Kudos! Another great call. Will do.

Bamalady wrote:Did anyone know that there is a National Sleep Awareness Week? This year it is March 5-11. Maybe we could have some stuff ready to go by then. In the past, one of those days has been dedicated to Sleep Apnea, although I have not found if that will be so this year.

http://www.sleepfoundation.org/hottopic ... p?secid=15

Drb....Google is usually pretty good about recognizing various important dates. Would you check and see if they have a history of recognizing the Sleep Awareness Week?

There is also a National Sleep Apnea Awareness Day coming up on March 8, 2007.

[quote="betty303"]
Anyone have any connections with writers or producers?

…a little Hollywood activism.

[quote="kcarter"][quote="betty303"]
Anyone have any connections with writers or producers?

…a little Hollywood activism.

Today in the Sunday Parade magazine section of the newspaper, the Health editor - Dr. Isadore Rosenfeld wrote an article titled, "When 'feeling tired' signals something more". It is about chronic fatigue syndrome.

I am in the middle of writing him to comment on the the point he made about there being no known cause or cure, and telling him that my own symptoms prior to being diagnosed with sleep apnea were virtually the same as the list he published.

I want to include some of the information from this post. Hopefully he might do an article on sleep apnea in the future and touch on some of the vital information that we all have learned through our own experiences and through the sharings in this forum.

If you are moved to write too, here is the address:
Dr. Isadore Rosenberg
Health Editor
Parade Publications
711 Third Ave
New York, NY 10017

If he receives many comments about sleep apnea - maybe he will act on it!

Parade has a huge circulation!

I am trying to track down the project that was functioning in the late 80s that set up small social events in the homes of hollywood TV and movie directors, writers, producers, etc. to share information about pressing social issues. The goal was to get them aware and excited about the possibility of creating scripts and programs around these issues.

They were quite successful on some major shows, and had an influence on a shift toward more socailly relevant content in programming.

I have not heard anything about this work for years, but I hope to find out if they are still functioning. I will let you know what I find out.

betty303 wrote:Today in the Sunday Parade magazine section of the newspaper, the Health editor - Dr. Isadore Rosenfeld wrote an article titled, "When 'feeling tired' signals something more". It is about chronic fatigue syndrome.

I am in the middle of writing him to comment on the the point he made about there being no known cause or cure, and telling him that my own symptoms prior to being diagnosed with sleep apnea were virtually the same as the list he published.

I want to include some of the information from this post. Hopefully he might do an article on sleep apnea in the future and touch on some of the vital information that we all have learned through our own experiences and through the sharings in this forum.

If you are moved to write too, here is the address:
Dr. Isadore Rosenberg
Health Editor
Parade Publications
711 Third Ave
New York, NY 10017

If he receives many comments about sleep apnea - maybe he will act on it!

Parade has a huge circulation!

Absolutely wonderful idea, betty303.
Gets tremendous media exposure from real life folks who actively share information online to help themselves because their problems are so formidable. What a great story! Think how many people who read that article and say "Hey, that's me!! Maybe I should check this diagnosis out with my doctor."

I will commit to writing a letter this week.

I just read the article in todays "Parade" that betty 303 mentioned. It amazes me that he ends his article with some steps you can take to feel better. These may be good suggestions, but had I read this and not "pushed" for a sleep study, I'd be busy making appointments for a massage and stopping off at the pharmacy on my way; all the time with apnea. The answer that I see is what you all purpose here.........more education for medical as well as the public about OSA. A letter to this DR. sounds productive.

nana wrote:I just read the article in todays "Parade" that betty 303 mentioned. It amazes me that he ends his article with some steps you can take to feel better. These may be good suggestions, but had I read this and not "pushed" for a sleep study, I'd be busy making appointments for a massage and stopping off at the pharmacy on my way; all the time with apnea. The answer that I see is what you all purpose here.........more education for medical as well as the public about OSA. A letter to this DR. sounds productive.

I definitely agree!
Do you think you or betty303 could give us any ideas about what you'd like to say in the letter? Just an outline of the important points, from your personal perspective, that speaks to what he should know about this ailment and how the diagnosis, treatment and compliance issue affects you?

I'm certainly not asking for any personal details, mind you, but if you have any general talking points that you think would be useful to share with this community, it may make it easier for others to pull their own thoughts together.

Whatever you choose in this regard is fine by me. The bottom line is to "make our case" in arenas where it will do us the most good. We are all accustomed to preaching to the choir here, but we need to get the message out to a different audience.

Thanks, nana.

drB

drB
I am not sure I am the one who is qualified to outline what this "Parade" magazine MD should be addressing. The "elders" in this group would do a fine job and there already must be some prepared info that could be sent to him. I am very new in treatment (not three weeks yet). I would like to say that what betty said is the key. This Md should write an article to let the general public know OSA is a treatable condition with some the same symptoms as the chronic fatigue.
This quote is what concerns me: "......diagnosing CFS comes only after your doctor has ruled out other conditions that can cause similar symptoms, such as low thyroid function, sleep apnea, lupus, depression, the side effects of medication and chronic disease of the kidneys or liver"
Now having read this quote, I say to myself that my MD has run numerous blood tests to rule out some of these mentioned medical conditions, but never once mentioned of a sleep study. The answer I always heard, for a very long time, was to loose weight and excercise. He was not wrong in his thinking or advice mind you, as these are important issues. However my last visit when I explained my frustration with my fatigue and my husband having to buy ear plugs by the box.........and do you think I need a sleep test? .....he said yes, I will order one...............guess what Ladies and Gents........Mr. MD is on cpap himself now.........his own personal awakening (no pun intended).
Now his condition has lead to my treatment.
I think that if OSA had been in my radar long ago and triggered wanting to know more I would have been an earlier treated case. I think the afflicted person himself/herself has to have the tools (knowledge) to push the issue of testing. On the other hand the MD also has to know what the patient is talking about..........

I knew I was suffering from sleep apnea long before my first sleep study. I went to a nitwit ENT about 6 years ago who looked up my nose, prescribed steroids and left it at that. I didn't do anything about it again until last spring when for some reason my blood pressure went way up. I got a new doctor, and was prescribed Atenolol for my blood pressure and Paroxetine for some anxiety. Everything was good, but I was still pretty foggy every day. I didn't mention anything to my doctor until I read an article that said that good sleep is necessary to regulate blood pressure. When I saw him the next time, I asked him if he thought OSA could be the cause of my hypertension. His eyes got really big, and he wrote out the order for the sleep study before I left. I don't think it ever occurred to him that that could be the problem. I am so glad I finally got what I needed to get a decent night's sleep. I wish I had insisted on it years ago. I know my dad suffers from OSA, as well as a close friend of mine. Interestingly, they both function at a very high level (or so it seems). I always felt like a zombie.

[quote="nana"]drB
I am not sure I am the one who is qualified to outline what this "Parade" magazine MD should be addressing.

This Md should write an article to let the general public know:

OSA is a treatable condition with some the same symptoms as the chronic fatigue.
This quote is what concerns me: "......diagnosing CFS comes only after your doctor has ruled out other conditions that can cause similar symptoms, such as low thyroid function, sleep apnea, lupus, depression, the side effects of medication and chronic disease of the kidneys or liver"

Now having read this quote, I say to myself that my MD has run numerous blood tests to rule out some of these mentioned medical conditions, but never once mentioned of a sleep study. The answer I always heard, for a very long time, was to loose weight and excercise. He was not wrong in his thinking or advice mind you, as these are important issues. However my last visit when I explained my frustration with my fatigue and my husband having to buy ear plugs by the box.........and do you think I need a sleep test? .....he said yes, I will order one...............guess what Ladies and Gents........Mr. MD is on cpap himself now.........his own personal awakening (no pun intended).

Now his condition has lead to my treatment.

I think that if OSA had been in my radar long ago and triggered wanting to know more I would have been an earlier treated case. I think the afflicted person himself/herself has to have the tools (knowledge) to push the issue of testing. On the other hand the MD also has to know what the patient is talking about..........