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Schmidhogan

Distinguished member
Joined
Apr 28, 2014
Messages
166
Reason
PALS
Diagnosis
10/2013
Country
US
State
Ca
City
Lafayette
My legs are weak but still function. A little foot drop. My arms are weak but work OK. My left hand is worthless but the right grasps pretty well. My problem is my torso. If I stand against a wall and take a step my torso goes unsupported and falls over limp so I'm staring at the ground. It's my torso, not my legs, that has put me in a wheelchair. Basically I just do glorified transfers now. Does or did anyone here have torso limpness? Any hints on how to cope? Sucks. Alex
 
yes, but he lost all use of both legs first. at this point be glad your legs still help you some with transfers and you can move them to arrange yourself comfortably.
always be thankful for the little things, my husband would love to move his legs some! even a little would be nice
 
> Sucks. Alex

Ditto that!



Max - Friday, October 24, 2014 1:10:47 PM

ALS suck, 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


.
 
Yeh. I should be thankful I still have some use of my limbs.
 
My legs are weak but still function. A little foot drop. My arms are weak but work OK. My left hand is worthless but the right grasps pretty well. My problem is my torso. If I stand against a wall and take a step my torso goes unsupported and falls over limp so I'm staring at the ground. It's my torso, not my legs, that has put me in a wheelchair. Basically I just do glorified transfers now. Does or did anyone here have torso limpness? Any hints on how to cope? Sucks. Alex

Schmiddy..... sounds like you are losing your core strength, just another example of how this sh!t can have different rates and progression, and effects on every individual. Wish I could take some of your burden, but am currently dealing with the terror of onset weakness.
Hang in there brother....:)
 
I'm very sorry Alex-thinking of you
 
Hang in there / I have lost use of both my legs and my hands are going/ it is so hard to see what you have lost
 
> it is so hard to see what you have lost

and, for me, even harder not to dream about what's going next :-(
 
Alex, sadly the best way to cope is to not walk with full assistance. A pelican belt can help someone walk beside you or do transfers more safely. It does depend on size difference though. You would need someone of a similar height.

You may need a neck brace if your neck is also affected?

Mostly it is going to mean a good quality PWC to keep your torso and head supported.

Sadly, yes loss of the torso or core strength is another part of it, but some don't notice it as much if their legs were gone first. They do notice, but not the same way as they were not trying to walk.

You are going to have to be so careful not to fall. Don't try to tough it out and take risks.

ALS is just crap
 
Thanks Tillie: it appears that most lose theirs legs first. I've got a good chair and live between it, my couch, and my hammock on warm days. Like to have full support of my back.
 
Knew something was terribly wrong when we went from slurring words to falling over in a chair and not being able to raise back up. Mom had a PORT-A-CATH "installed" yesterday. Makes my job much easier.
 
Yes, we should be thankful fort everything we still are able to do. Tuesday I fell over and hit my right foot badly. Now it's blue all over and swollen but still , I must have had a guardian angel since nothing is broken and I didn't hit my head.
Arda
 
>Tuesday I fell over and hit my right foot badly


sehr glücklich

rule #1: don't fall!

btw, meine Tochter hatte gerade einen Monat Besuch hier in den USA, lebt sie in Oldenburg Studium der Neurobiologie for the last 8 years :)
 
I'm losing my core strength and the facsiculation have increase. Very uncomfortable
 
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