Golly...

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Clearwater AL

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Get Real
Golly, On the General Discussion Forum, Schmidhogan started a Thread "Torso Weakness." I sure didn't need to read that! I should have skipped over that one! Is anyone else in the PLS ranks having torso weakness? I posted in the "Stabbing, Highly Localized" Thread of something I've noticed ( I kinda hi-jacked the subject and I'd guess several weren't tickled to read about it) but I think it goes along with torso weakness. Again, is anyone else dealing with torso weakness?
 
>Again, is anyone else dealing with torso weakness?

neck, trying to sit up ...



Max - Friday, October 24, 2014 4:46:41 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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Hey Max, I haven't been one to be easily spooked with all this but, a week or so one night out on the back deck my wife said something about a star above... I couldn't tip my head back to look straight up. Since then I've noticed sitting in my desk chair I can't put my head back all the way on the top of the back rest like I used to. IIWII I guess.

It's amazing how these little things take you by wondering surprise.
 
>It's amazing how these little things take you by wondering surprise.

yeah ... I still try to get hp work done, but have to hold my head with my bad arm (one bad deserves another?). It gets worse as the day progresses.

IIWII ("It Is What It Is!") ...
 
My husband cant either . Its like he is trying to rest his chin on his chest. He has difficulty in his borrowed wheelchair because he slides down in it. I cant wait til the VA stuff is straight and he gets power chair with tilt!
 
> I cant wait til the VA stuff is straight and he gets power chair with tilt!

:), Steph the pwc offers us so much freedom and the va so much help it will be worth the wait. Have you been approved for the auto grant yet? This took us the longest & months ...

tell you va ot about Steve's neck/head issue -- they have a couple of pretty good devices. Also check w/ your mda -- they gave me a headrest thing that I'm sure will help if I weren't too stubborn to use it.
 
Havent made it thru the compensation piece yet Max. It has been 2 months and they are making us go in for an appointment Thanksgiving week. We filed a fully developed claim with all the appropriate paperwork but Steve's presentation was unusual...neck drop, phrenic nerve destruction, diaphragm paralysis, then the cramping and fasciculations everywhere. Hopefully after that appointment all will be approved. He has the health benefits but at level 5 which means he will wait forever to get an appointment. He has a brace he got for his neck that helps a lot. He cant wear it when he eats though and I am always trying to get him to eat since he doesnt want to use the peg for calories yet.
 
Didnt think to check with mda....will get on that. My post went to mod...grrrrr. no auto grant yet because the compensation piece isnt done. So no pwc in the works either. We have a loaner but its not the same.
 
Yes Al.
I have had it for several years,it was my PT at the time who noticed it....my hands and arms can shake uncontrollably when I try to hold something which she said was why but I think it is some type of clonus......
However when I tried swimming I found I could no longer support my body on the water....my lower body just flops into the water which I was told is a sure sign of torso/core muscle weakness. I tend to slouch over the sink or at a work surface as its difficult to stand in one position erect.
 
>Havent made it thru the compensation piece yet Max.

Steph, PVA is doing this for you, right?
 
Yes Max they are. They assured me this is the normal time frame here.
 
>Yes Max they are. They assured me this is the normal time frame here.

good, but if in 2 weeks ...
 
max what is the auto grant and dose it work for us.
 
Hi Al,

Some time ago, I posted my concerns about involvement of the "axial" muscles, which involves torso weakness. From Medscape:

"[PLS] affects the lower extremities, trunk, upper extremities, and bulbar muscles (usually in that order)" (Source: Medscape: Medscape Access ).

I had an L3-S1 fusion in 2008 (very big surgery) which has severely compromised my lower lumbar spine -- let's just say I have difficulty maintaining (or even wanting to maintain) my "uprightness"....add to this leg weakness, sacroiliitis and osteo in the hips and SI joints, pain in my neck and shoulders every day from spasms, and spasm and pain in my arms and hands (mentioned in another thread)....and:

I'm grateful that my thoracic spine and my head feel just fine. :)

Today, I cut the grass and raked leaves (***) in the front yard. I'll pay for that later.

Mike


*** Raking leaves in my front yard is an exercise in futility. But it's still exercise).
 
Al, my first post went to moderation, but wanted to add the following as well (from Medscape):

"As PLS progresses, patients may develop balance problems and have a tendency to fall. Axial muscle involvement may result in lower back and neck pain, which may aggravate back or neck pain from other causes (eg, degenerative disc disease, osteoporosis).

As the upper extremities become involved, patients may have difficulties with activities of daily living (ADLs). Involvement of the organs of speech may result in spastic dysarthria (which initially may be mild)."

(Source: Medscape: Medscape Access )

Mike
 
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