Webinar on Diaphragm Pacemaker

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tripete

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There is a webinar scheduled for today at 4PM eastern time on the Diaphragm Pacing System

To register go here:

https://attendee.gotowebinar.com/register/5494824017281538818

"Dr. Jeremy Shefner (Barrow Neurological Institute) and Dr. Jonathan Katz (California Pacific Medical Center) will present the DPS in ALS clinical trial and discuss why the completion of this particular study is so important for the PALS population. They will review the study rationale and background of the DPS device, provide an overview of the inclusion criteria and talk about what would be expected of a patient if they were to participate in the study.



Please join us for this very informative session. "
 

John1

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Thanks for this. Going there now.
 

tripete

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It was a good webinar, it looks like it might add 12 months to life?
 

John1

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I've been following the DPS for several years. I was actually surprised that there are fewer beneficial data for its use on PALS than I had previously thought. It is discouraging how few subjects have signed up for the trial in the 18 months since it started. I can't apply for a few reasons: too long since onset and I live in Canada so Canadian Health Insurance won't cover it since it is not approved in Canada. I would if I could.
 

tripete

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I am talking with my new dr about it next week and think I will enroll in the study. The biggest concern I have is probably a stupid one, but I love swimming, or lying in the water, with the DPC I don't think I can do that and I am not sure I want to give it up.
 

Nikki J

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I know some people said after a time for healing they were allowed to get it wet. You might want to do a search for tmasters a member who had the dps and had a thread on the dps
 
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starente15

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I hope you can get in it Pete!
 

starente15

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Hope you can get in it Pete! It sounds promising for many people..
 

patrick123

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I got my DPS IN SEPT 2013. And I am part of the study with the University of Colorado Medical Center. When I got it my DPS my FVC was at 68% it's now down to 60%. I think it is helping. I was diagnosed in SEPT. 2012 and my FVC was at 90%. And you can go swimming with it.

Patrick
 

tripete

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Thanks Patrick, that makes the decision on my part easier!
 

Graybeard

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The study guidelines state 47-50% FVC. I waited until my FVC was there, and by then my phrenic nerves were dead, so no DPS.
 

John1

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I got my DPS IN SEPT 2013. And I am part of the study with the University of Colorado Medical Center. When I got it my DPS my FVC was at 68% it's now down to 60%. I think it is helping. I was diagnosed in SEPT. 2012 and my FVC was at 90%. And you can go swimming with it.

Patrick
Losing 22% in the first year and then only another 8% in the following 16 months with the pacemaker is impressive. Let's hope the trial can demonstrate similar numbers on most PALS.
Have you heard any results of other PALS in the trial?

John
 

patrick123

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I have only meet one other person in my study and just got it a few months ago.
 

tripete

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They will be posting a video of the webinar on line I will post a link to it when it is available, but some of the suggested results show that you may get an extra year. My question that I was not able to ask was at what quality of life.
 

affected

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... some of the suggested results show that you may get an extra year. My question that I was not able to ask was at what quality of life.
I don't know that this is truly a question that can be answered Pete, because there are so many variables.

Being able to breathe more fully and not building up CO2 is going to give every PALS more QOL on the one hand. On the other hand, their perception of QOL is going to then be influenced by what other progression they are subject to. The DPS will not make any difference to the rate of progression, and so we are back to the situation of the difference in progression every PALS experiences.

For some, they may still have a fair amount of physical functionality and have enjoyed a longer time. No one can tell any PALS with certainty what that extra year will bring them, unless they were already far progressed everywhere else before the breathing is affected.
 
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