Vids of Dr. David M. Rapoport at Manhattan A.W.A.K.E. 5-5-10

jnk · Post by **jnk** » Thu May 13, 2010 7:59 pm

Jersey Girl · Post by **Jersey Girl** » Thu May 13, 2010 9:59 pm

Dear jnk,

I just watched parts 1-6 and wow! He is very interesting. What a wonderful evening - choc full of information. I can't wait to watcher parts 7 - 10. I felt like I was at the Awake group and was so glad that you posted this, since I just can't make it into NYC - I do a lot of night meetings at my work.

Thanks so much!

Jersey Girl

LSAT · Post by **LSAT** » Fri May 14, 2010 6:45 am

Thanks jnk....Very interesting information.

carbonman · Post by **carbonman** » Fri May 14, 2010 8:53 am

WOW....a lot of food for thought here.
THANKS! for posting this.

I have only watched the first 5.

I can see why we have such a different view
of our AWAKE meeting experiences.
You go and hear educated people presenting
real and interesting ideas and information.
I go and hear marketiers and business generators
presenting misleading and marketing BS trying
to create new business.

My impression of the Drs. comments about cflex and auto
are that he just has not seen data to prove that it works.
But is not against it being there if it does help people
use their cpap.

I was totally fascinated w/the concept of
comfort is only needed when we are awake,
not when we are asleep.
So, if "sense-awake" is to work,
are new masks going to be developed to allow you
to breath comfortably at 0 to ??? pressure when you are awake?
How is that going to work?
Will they just be masks w/larger anti asphyxia valves?

We all know that some people are disturbed when using auto
by the change in pressure. How is it going to work if
when you wake up pressure is dropped to 0,
then as soon as you return to sleep the pressure jumps to 12cm?

From what I have listened to so far,
it once again makes me feel very fortunate
that I have adjusted to and am wildly successful
w/my therapy. I am also very glad that some of those
comfort features that he discounts were there for me.
Ramp, cflex and auto all contributed to my evolution and success.

....and I guess that my total cpap expeience will now have
to include a subway ride w/JNK, downtown to see
an AWAKE presentation by a distinguished Dr.

Thoughts/comments/suggestions

Nord · Post by **Nord** » Fri May 14, 2010 11:04 am

Thanks Jeff

I really enjoyed the presentation... If all the presenters are like that, I can see it being a very popular meeting.

I'll be looking for others.

Nord

joelrk35 · Post by **joelrk35** » Fri May 14, 2010 12:02 pm

Thanks for the posting. I have watched several and will finish the rest later today. The information is very informative especially for us newbies.

Hawthorne · Post by **Hawthorne** » Fri May 14, 2010 1:53 pm

It was really interesting but I wish the cameraperson had shown all the slides to which the doctor spoke in the presentation. Only a few of the slides were shown.

I don't want to be over critical but I could not hear the questions from the participants and that would have added to the helpfulness of the videos as well as seeing all the slides.

Very good information though!

Janknitz · Post by **Janknitz** » Fri May 14, 2010 2:03 pm

Thank you so much for posting this since Manhattan is a bit of a commute from California!

I enjoyed Dr. Rappoport's talk, but while he was talking about all the machine tweaks not working to increase patient compliance, I kept thinking "it's the mask, stupid!". He talked about technology to make the CPAP pressure drop when the patient is awake--I think the Ramp button (I have mine set fairly high at 9--which is my starting pressure) does that fine. That's NOT the problem, IMHO.

I don't mean to imply that Dr. Rappaport is stupid, but I do think that lack of compliance has largely to do with mask discomfort. If I could not have found a relatively comfortable (not perfect, but tolerable) mask, there's no way I could have continued with this therapy, no matter what else was working well.

Masks need to be comfortable, easy to doff and don, leak free, and work consistently. Many of us here put up with a lot. We're smart, educated people and we get more educated here. We do all sorts of tweaks and problem solving. We are not the majority of the diagnosed OSA population--I think too many people just can't get comfortable and give up.

I was eating lunch out the other day and two women were sitting at an adjacent table. One was speaking about her husband who had been diagnosed with severe SA and he had been set up with CPAP. He refuses to wear it, and she stated that her attempts to talk him into using it were fruitless--the machine was somewhere in the garage and she didn't even know where it was because "it has been out there for months". My guess is that if his sleep lab and DME had followed up to make sure he was truly comfortable in his mask, he might still be using it. I think that both probably drop the ball as soon as basic compliance has been met.

We don't have a local AWAKE chapter, but I think there should be one here, and one of the important roles should be some sort of "buddy system" that will ensure that newbies get plenty of support until they have found a comfortable and usable mask. I bet that would increase compliance a lot.

echo · Post by **echo** » Fri May 14, 2010 3:15 pm

Janknitz wrote:I don't mean to imply that Dr. Rappaport is stupid, but I do think that lack of compliance has largely to do with mask discomfort. If I could not have found a relatively comfortable (not perfect, but tolerable) mask, there's no way I could have continued with this therapy, no matter what else was working well.
...
We don't have a local AWAKE chapter, but I think there should be one here, and one of the important roles should be some sort of "buddy system" that will ensure that newbies get plenty of support until they have found a comfortable and usable mask. I bet that would increase compliance a lot.

I totally agree, as would most here I think. It's the MASK stupid!!! I like your buddy system idea That and a mandatory membership to cpaptalk.com

rested gal · Post by **rested gal** » Fri May 14, 2010 5:24 pm

Thanks so much for posting those video links, Jeff. And thanks to Mike for videotaping most of the talk! Good job, both of you.

In case some readers missed jnk's excellent report about Dr. Rapoport's A.W.A.K.E. talk:

viewtopic.php?p=478018#p478018
Dr. David M. Rapoport at Manhattan A.W.A.K.E. on May 5, 2010

I agree with you, Janknitz, about the crucial role the mask plays in whether people can do "CPAP" or drop out...
My post on page 2 of that thread:
viewtopic.php?p=479206#p479206

part of what I wrote: As for noncompliance... I've always thought the #1 problem most people have in being able to do any kind of CPAP at any kind of pressure is:

the MASK

There are many machines with enough comfort features to make using the machines themselves do-able. Sense-awake would not be my idea of a good feature at all, imho. But that's just me.

However, finding a mask a person can actually sleep in... well, I think MASK issues cause the biggest problems that lead to so many CPAP drop-outs. "SensaFace" might be a better thing for Dr. R to spend his time on.

Jeff, I'm glad to have had a chance to "see" Dr. Rapoport delivering his talk. I can certainly see why he is in great demand as a guest speaker. Lots of charisma, enthusiasm. Very likable man.

I must say I was amused by how many times he mentioned the need to make CPAP more "comfortable" so people would "stick with it", yet is off on a wild goose chase, imho, with his idea that dropping the pressure to 4 (he'd have it go lower if he could!!) when they are "awake" would make the whole experience more "comfortable." Sheesh.

I'm glad someone in the audience asked about whether irregular breathing during REM would be mistaken for irregular breathing during "wake." Dr. R talked about "big" irregular breaths in wake vs "little" irregular breaths in REM. The machine is apparently designed to try to distinguish between the degree of irregular breaths so as not to confuse REM during sleep with "Wake." I don't have a great deal of confidence in Sensawake being as smart about that as they hope it will be. As he said, the machines are in trials now... we'll see. Perhaps my lack of confidence in how well Sensawake will interpret breathing during REM is because a previous pet algorithm that I believe (I may be wrong) that Dr. R helped design (IFL1 in Puritan Bennett 420E autopaps) was a disaster at interpreting a type of flow limited breathing that seems to be normal for me.

Quite a few of us on this message board who were using 420E's had to turn off IFL1. And we'd not have known to ditch IFL1 had -SWS not figured out what was happening. Nor would we have been able to identify when IFL1 was wrong for us, had we not been using software to see our own overnight results. I can only imagine how many people over the years who were given 420E's and endured pressure runaways thanks to IFL1 being on by default. They's have been left at the mercy of DMEs and sleep docs who never look at any data beyond hours of use and probably wouldn't have even understood the 420E's 96 detailed graph info anyway.

If Sensawake makes mistakes with even a few people about REM - when apneas are most apt to hit - views their REM breathing as "awake" and drops the pressure down to 4 ....

Would be interesting to know how the current trials using F&P machines with Sensawake are being conducted.

I understand that Dr. Rapoport recognized that mask comfort issues play a part in CPAP compliance, and this talk was to be only about pressure issues. However, I have a feeling that he (and most docs and most DMEs) don't really "get it" when it comes to the real reason for the high number of CPAP dropouts. He seems to think that when asleep, "comfort" doesn't matter. I think there are all kinds of sensory input stuff happening even while we're sleeping. The sounds of leaky mask, a hard plastic edge digging into one's face, a mask gouging the upper lip, straps pulling... many sensory things caused by a mask could be sneaking through, disturbing sleep. In my opinion, anyway. But I'm not a doc. LOL!!

Janknitz · Post by **Janknitz** » Fri May 14, 2010 5:59 pm

I agree with you, Janknitz, about the crucial role the mask plays in whether people can do "CPAP" or drop out...
My post on page 2 of that thread:

Great minds. . .

I agree with you, too, that Sensawake doesn't make sense. I have my bottom pressure set to 9 because it's uncomfortable to breathe with it lower--it feels as if I am not getting enough air. What point would it make to essentially turn off the air flow when awake--that's panic inducing to me because even if it's just nasal pillows and you can open your mouth, the sensation is that you are sealed into the mask.

Maybe Dr. Rappaport needs to spend a few months sleeping on CPAP! They should do some studies on CPAP compliance with a CPAP "coach" who works regularly with the person to help him or her adjust and become comfortable with the mask--I'll bet that will raise compliance rates better than any machine algorithm! Sleep labs and DME companies seem too busy pulling in the next line of customers to care what happens to the patient after the insurance has paid out (though, if they want repeat business . . . ).

echo · Post by **echo** » Fri May 14, 2010 6:55 pm

I had swore that someone had mentioned the MASK in this thread... turns out it was you RG in the *previous* thread. Thanks for repeating it

I think your last paragraph is especially SPOT ON!

jnk · Post by **jnk** » Sat May 15, 2010 12:00 pm

Hawthorne wrote:It was really interesting but I wish the cameraperson had shown all the slides to which the doctor spoke in the presentation. Only a few of the slides were shown.

I don't want to be over critical but I could not hear the questions from the participants and that would have added to the helpfulness of the videos as well as seeing all the slides.

Very good information though!

Hi Hawthorne,

All the videos are posted now.

The slides can be downloaded in power-point form at http://manhattanawake.org/download/16 .

The doc seems like that kind of guy who would appreciate all the comments he can get on his presentation. And I assume he would welcome open discussion on any of his more controversial points.

jeff

roster · Post by **roster** » Sat May 15, 2010 12:09 pm

jeff - you da man!

Hawthorne · Post by **Hawthorne** » Sat May 15, 2010 12:31 pm

Thanks so much Jeff!!

Now I can see all the slides - that's great! I have saved it for further study!

Vids of Dr. David M. Rapoport at Manhattan A.W.A.K.E. 5-5-10

Vids of Dr. David M. Rapoport at Manhattan A.W.A.K.E. 5-5-10

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