Voice - going -going ...

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tripete

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Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
My voice has been good except for when my lungs would wear out then it would get weak and squeaky. Since about Monday it has been squeaky all but for the first hour or two of each morning. My lungs are either getting very weak or I have some other issue occurring.

Is this the way voice loss normally happens? Especially for people with breathing onset?

I kept putting of voice banking thinking I had more time... :confused:
 
Yup......you are progressing just like me in regard to voice quality. Nobody can even understand me but Harlee and my wife sometimes. The voice loss has been my most difficult obstacle to deal with. It all sucks for sure, but speech isolates you from the public and friends. I was always the guy who would tell jokes and just generally be inappropriate, the life of the party.
Now I have to be a smartass with my fingers......go ahead pile on!
 
I can't speak but can make sounds. That how I wake my hubby up to be turned.
 
My breathing is ok but my voice is gone. My sister and surprisingly my 7 year old boy are the only ones who understand me well. I can still get my point across to most people using a combination of foot gesturing and Sean-anese.... I recently had a breathing test done and blood gases as well, and they came back normal, so it is possible to lose your voice before breathing. I agree it is the worst symptom, if I had to choose between getting my arms back or my voice I would definitely choose my voice.
 
Voice is created by passing air over the voice box. So when the breathing becomes very weak, the voice also does.

Very different loss of voice to bulbar symptoms where the tongue won't work and so slurring begins, then loss of any ability to create words.

Neither are good, communication is so much a part of being a person and it's so cruel to have that taken away :(

Since Chris lost his hands and arms very quickly too he couldn't even speak with his fingers. He also was a life of the party kind of man. crap disease
 
Yep. It's a crappy disease alright.
 
I guess if my breathing is getting so weak as to not push out words that I will see another big decline in my FVC Wednesday. Are there any FVC based guidelines on what to expect if your rates are at different levels?
 
steves voice is.also getting weaker but his fvc remains the same. However his mip and mep have dropped considerably. His cough ability has dropped to 30% of his normal at diagnosis.
 
YO MARK, good you can use your fingers to be smart a$$. i can't get my f-u fingers to come up but still have a weakened voice that can still throw out inappropriate remarks at the appropriate time. one day at a time. later chally
 
Hey, just throwing my two cents out there. Not to make light of the discussion at all, I just wanted you all to know that sincerely from my perspective you all have strong voices and I hear you clearly.
 
>Nobody can even understand me but Harlee and my wife sometimes

sometimes :-(
 
I'm sorry Pete, I really am.

I'm in the category Tillie explained. It weakness of the tongue muscle and my soft palate that has robbed me of my voice. Cant talk, sing, whistle or hum. Last check my FVC was 85%. I've wrestled with this for about 8 months now. I often think I would have rather lost the use of my legs than my voice, but then again I know there are PALS that have lost the use of their legs that would say the opposite. There's no escaping it so gotta live with it. And that's what I'm doing.

Vince
 
There are a lot of people who will be glad when I can no longer talk :?:
 
My left hand fingers curl except for the middle finger. So I can give the sign and my iPad says the words.
 
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