The progression has started

[bmra]

Hi,
I had posted several times awhile back about my father in law and his "possible" diagnosed. He now has an official diagnosis confirmed finally by his last emg. He has bulbar onset. In August his Fvc was 81% which decreased to 50% by January. He has since gotten a peg tube (although isnt using it yet), and tonight we finally got the bipap and cough assist. It is so overwhelming...
I have the feeling I will have lots of questions in the near future. That and done people who understand what we are experiencing.
Thanks for listening,
Michelle

 

[momap53]

Sorry about your Dad's diagnosis.

We're here.

Learn to use the search feature too.

(SRY , typing is getting tiring these days)

 

[notme]

Has he looked into the diaphragm pacer at all? that might make breathing a bit easier? I'm so sorry you're noticing progression. Hugs

 

[bmra]

I don't know what the diaphragm pacer is? He pretty much does whatever his dr at Columbia recommends, nothing more nothing less. I am trying to stay one step ahead do I know what to expect...

 

[Darlene Blessed]

I am the caregiver for my husband who has Progressive Bulbar Palsy. Friday we have an appt w/doctor at Vanderbilt to see if he is a candidate for the Diaphragm Pacer. Darlene Blessed