Status
Not open for further replies.

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
726
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Hello folks, on Friday had my 6 month checkup with my neurologist, no progression that is two checkup in a row now, a year now with no progression. Made me and the neurologist happy.

Discussed removing the Peg but because I take my terrible tasting meds and vitamins with it I decided to keep it.

Next appointment is next May, hopefully with the same results.

I have had no improvements though, still can’t talk and use a walker or wheelchair to get around.
Al
 
Glad for your long plateau. That’s what most of us want, though hopefully before too much bad stuff sets in. Wishing you another stable 6 months.
 
Congrats Firefighter on the awesome news!

hugs,

sue
 
Congratulations Al! Do you use bipap at all yet? It is amazing how unpredictable this disease is. Wishing you another 6 months of plateau!
 
No bipad, to tell you the truth, I don’t know what a bipad is. The neurologist was quite surprised that I still sleep with one pillow.
Al
 
Congrats. No progression is even better than slow progression !
 
No bipad, to tell you the truth, I don’t know what a bipad is. The neurologist was quite surprised that I still sleep with one pillow.
Al

Great news, You are slow progression! BiPap will come as your breathing is affected. It is similar to Cpap but it allows for less resistance on exhaling. You can also bleed 02 into it.
 
Al, That's the best news I've heard all day!!!!! I'm so happy for you.

There are cases out there where a PALS progression just stops. Keep taking the same supplements and eat whatever it is that you've been eating!
 
Congratulations Al! That's fantastic news xo
 
I still eat in the regular manner and eat and drink what ever I want. I use my Peg for meds and vitamins.
 
Status
Not open for further replies.
Back
Top