question on legs

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Janbrit

Active member
Joined
Jul 16, 2014
Messages
81
Reason
PALS
Diagnosis
08/2014
Country
Uk
State
Kent
City
at the back of beyond
hope no one minds me asking but before you were unable to support yourselves on your legs what did it feel like. I am still working as my job is 'desk bound' but more and more when I go to stand my thighs feel like they cannot support me, I feel like jelly and just want to flop and not try anymore. The fasics are driving me mad today, great big thumping ones in my thighs, I wish they would give over already!

Told by my Consultant this week who transferred me to pallitive care at the hospice that I am on 'borrowed' time and I will not necessarily be unable to walk at the end, its the breathing that is becoming an issue
 
I got in a power chair while I could still walk, although it was a pretty ugly walk and I was falling. Please remember that falls are the cause of death for many ALS patients. My legs felt like jelly, and sometimes they just gave out. My durable medical equipment guy who is worked with a lot of ALS patients says the sooner you sit the longer the legs will work. I can still self transfer to my recliner, my bed, or the toilet. Hope that helps.
Hollister
 
thats really useful, thanks. I think the most important thing for me is being able to use the toilet on my own. I shall grab the wheelchair then and make the most use of that. I have been struggling with my cane and think it is time to give in to being assisted
 
hope no one minds me asking but before you were unable to support yourselves on your legs what did it feel like. I am still working as my job is 'desk bound' but more and more when I go to stand my thighs feel like they cannot support me, I feel like jelly and just want to flop and not try anymore.

The description of your leg weakness sounds spot on to me. I would have used pretty much the same words to describe how my legs gave out on me. You need to get a chair ASAP. It doesn't have to be a full fledged rehab chair to start with, most anything will be OK in the beginning.
 
I am like Hollister, self-transfer to toilet and bed. I do like to stand sometimes to keep the blood flowing. I pull up to the cabinet and stand up with the chair behind me. Don't wait too long to order the power chair, it can be a long process.

Tracy
 
i started losing my arms first. but it didn't stop me. it seem like my lags was alright. as time went on with the comps and trail runs we was doing. i was setting more then walking. my lags was getting weaker. i was falling a lot. i thought i was do to my arms at the time. didn't know of this dame als then. now there is not much in my lags now. i can get up on them a little with help. i think if i knew what i know now. i would of been in my wc along before now.
 
Once again I agree with the jelly analogy. My legs are an objective 4 but my torso has given out. Like Tracy and Hollister I'm only good for transfers. Like to have a handhold wherever I go. Get a chair pronto. Alex
 
Hello, similarly my legs feel like jello, but because I have enough spasticity I am able to get up and lock knees into straightness and transfer or hobble with holding onto a wall. Less and less can I walk by holding onto a friend's are possibly due to all around wobbles and a weak core.
I can second all of the above perspectives. A manual wheelchair helps for visiting friends as it is titanium and light, but I rely on others to push me. A powerchair conserves my energy and keeps my leg strength for transfers and fussing here and there. The manual chair, though necessary for travel, came too late for my arm strength... so yep, do consider getting a power chair to conserve strength. It truly was an challenge to get my head around and let go of what my mind thought I could do vs. what I should not do. Best health to you.
A
 
Everyone are spot on - with ALS it is not 'use it or lose it'. You have to turn your thinking right around. Another reason to try to stay ahead - the pwc may take a little time to order and arrive, so get it all started now :)
 
>Hello, similarly my legs feel like jello, but because I have enough spasticity I am able to get up and lock knees into straightness and transfer or hobble with holding onto a wall. Less and less can I walk by holding onto a friend's are possibly due to all around wobbles and a weak core.

also remember the rules:

#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
 
I think my legs are starting to go as well. I can still walk but my calves and ankles feel weak almost like they used to feel when I did too much exercise on them. Also they are trembling and fasculating quite a bit.
 
mine are numb
 
really Max? My arms hands and face are numb-I KNOW I have a face cause I can see it in the mirror, but I cant feel it anymore.
Thought ALS wasnt supposed to damage sensory nerves-at least thats what we tell the noobs on the DIHALS but too many people have mentioned this for it not to be true-just like they say in the literature its not supposed to affect bowels or eyes, but that also doesnt seem to be the case.
I guess the rules are there are no rules.
 
I think it is fair to say that in DIHALS as it is primarily motor and starts there. Some people later on do get some sensory involvement but by the time that happens there is no real question as to dia gnosis
 
My legs feel like I am in an uncontrolled fall when I go to sit down. Once I slightly bend my knees to sit I can't stop unless my arms and hands are on a bar or something to support me. Not the funnest thing to experience.

I want to thank everyone on this forum in helping me understand, accept and own my diagnosis this year.
 
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