pbp what to expect in late stages

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booandi

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Joined
Jan 13, 2012
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17
Diagnosis
5/2011
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US
State
CA
City
MADERA
can anyone please give me a clue as to the late stages of pbp?
as far as being confind to a wheelchair/bed does this happen gradually or will he wake up one day and be unable to move? :sad: anything that anyone can tell me about the mid to late stages would be very helpfull
thank you
 
Hello. I think everyones journey is different. My PALS started with slurred speech in August 2008.

The loss of limb movement does not happen overnight - it crept up on my husband. As of today he has no movement at all so its taken a few years - still too fast I know, but def not an overnight thing.

How is your PALS doing at the moment?
 
My dad had Bulbar Palsy also. Like they say everyone is different. My dad started with the slurr in 06, did not get the diagnosis til 08 and passed in 09. My dad was lucky I would say. He still drove til the day he passed, he had a feeding tube put in ,in Dec 08. He had a neck brace and just got leg braces that he would not even try, was a little unbalanced when he got up from a chair ect..They told them to order an electric wheelchair, he told them not to, he would not be around to use it, dad was right again.....I really wished he would have now I could have sent it to Hawaii for my friend who needs one bad and keeps hitting paperwork walls put up by morons.
I would read sixthkids post , they may also help you.. Good luck and one day at a time.
 
Booandi, My weakness started in my R leg with footdrop in 2010. I was able to walk unaided till summer of 2011. I used a cane, then AFO, then rolling walker as the L leg became involved, and now primarily a pwc. It has been a gradual process for me. I'm now having some weakness in my R arm and shoulder, again, it's a gradual progression. Get adaptive equipment on hand as early as possible and learn to use it before the need is critical. Try to help him be proactive, adapt to the changes quickly and move on.
Good luck!
 
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