These DPS notices say news is good for over 50% of the newly diagnosed ALS patients

[MuonOne]

Does LadyInn not respond?

 

[Ladyinn]

she does but I've been away and without my dragon speak. which is what i used when it picked up something someone else in the room said and typed it. no editing on my part.

 

[MuonOne]

Voice processing, its bringing us the latest thing in typos! I wonder if they have or will integrate a language processing program such as Grammatik to help detect and correct such issues.

I am sorry to hear of the disqualification . . . there was some talk of pursuit of a new study purposed to evaluate the use of the pacer in low FVC individuals but those stats certainly are not enticing.

Thank you for your reply and

Happy Thanksgiving!

 

[cmohr]

Has anyone who is part of this forum received the pacing system? My dad is from Canada and is considering this. From the research I've done he should qualify to have it done as his FVC is well above 45%, but we will have to pay for it most likely. He was just diagnosed in August of 2011 and was just put on bipap and had a peg put in. We are hopefull that this will really help him but would like to hear from some who have had it done.

Thank you,

 

[913mommyof3]

My husband's neuro said that she doesn't believe this procedure will be a postive one for pals. Has anyone else been guided this way by their docs? She is a neuro at the alsa clinic he attends. She feels bipap is the best way to go and she isn't recomending we look at venting. Says it is too much work on one caregiver. Any comments about the DPS or venting is appreciated!

 

[MuonOne]

ALS 'proves' you don't have to go to the wild wild west to find a frontier . . .

One should always seek the opinion of more than one authority on matters of great importance.

 

[Ronc75]

Go look at the Patients Like Me forum. One fellow has posted a long description of the Diaphragm Pacing System together with photos and fairly comprehensive explanations.

 

[glupavomomiche]

Hey y'all,

If you want more info straight from the horse's mouth, please look up my friend Shawnamarie Weatherford on Facebook (and yes, I got her permission to give out her name before I posted this). She was the 3rd person post-FDA-approval to get the DPS and she will tell you all about it and even share pictures. Her procedure was done by Dr. Onders himself.

Hope that helps!

~ Sarah

 

[4evrhopeful]

" These DPS notices say news is good for over 50% of the newly diagnosed ALS patients"

where are the notices

 

[MuonOne]

4evrhopeful, The #1 post of this thread contains two, there are actually many variations of the notices, but these two seem to be the most accurate. Your post number is #24, the first post will be either at the beginning or end of the depending your logon status or account settings.

glupavomomiche, thank you for your news.

 

[MuonOne]

I am also wondering if anyone here is using the pacer . . . I am aware of twenty-eight ALS cases with four more actively heading toward obtaining the surgery. I am sure there are well over one hundred ALS patients who have tried the pacer but I've not heard a recent update on the count. My understanding is that several ALS patients in Canada and France have the pacer.