Having a hard time with a leg

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Willow

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Joined
Dec 28, 2006
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102
Reason
DX MND
Diagnosis
04/2012
Country
CA
State
East Coast
City
NA
Hi everyone,
I am having a hard time with limbs in general but one leg in particular is proving to be more difficult. If I stand or walk for a time it is an issue but if I sit on a chair of any sort, even just to try and drive the car a short distance somewhere it still proves to be a problem. Even at rest at night the limbs act up.
When I walk, I have put my hand on the back of my thigh and can feel (what I think is a tendon?) the snapping motion. I have little muscle left in the leg & the back of the thigh and the buttock area. I have lost about 10 - 12 lbs in recent months, which is a bit concerning as I now weigh about 125 lbs at 5' 9".
I can't really carry around a cushion to work etc. but would appreciate some insight as to what I can try and do to alleviate some of this discomfort etc. I am still trying to continue on with things as best as possible. My left side, while a bit compromised, doesn't seem to be as bad.
Thanks in advance for any advice anyone has.
 
Hi Willow,
I just saw your post and since no one else has responded to it yet with better info, thought I'd try to figure out what you mean.

I'm not sure what you mean when you say you having problems, and your limbs act up. What are they doing? Are they cramping, twitching, or otherwise in pain? Or not responding when your brain says to move, due to muscle atrophy? Not sure I'm saying this right either...

Why can't you bring a cushion into work to sit on? And have one in your car to alleviate pressure on your butt. I find even sitting on a towel helps out if my cushion isn't available. If you put a small pillow in a bag and brought it with you to sit on (I'm assuming you're still walking), that may help in the short term. A few well placed, rolled up towels may help and not be as obvious. But there comes a point when you won't care if it's obvious, you just want to feel ok.

Good luck!
 
Thanks Helen for replying and sorry about any confusion I caused.
My legs cramp, twitch and are quite painful...especially as the day goes on. I am still walking, I am just slower than before and tire more easily. I work part time in a pre-school and there's lots of bending, kneeling, up & down, moving etc. Very seldom is there sitting time so a cushion for that wouldn't really help there. I hadn't thought about it for the car, so thank you, I will give it a try. I have foot drop on the right side and this is a bit of a problem having the ability/strength in the foot to use the gas & breaks. I tend to scoot my seat up and use my heal. Unfortunately the thigh and buttock muscles are atrophying and painful. Maybe a cushion will help with the pressure there. Not really sure I am describing this correctly but I do thank you for taking the time to respond.
 
HI

Unfortunately, you're in a situation where you should be taking it easy. It honestly doesn't sound like you should be driving--at least not without hand-controls.

Is it necessary for you to continue working? You should be able to apply for disability and get approved rather quickly with ALS. I'd suggest a Roho or similar cushion. I'd also ask your doctor for something for pain and spasms--baclofen can help with spasms and cramps.

Honestly--if you're bending all day and picking up kids--I'm not surprised you're having pain and cramps. I had to quit working due to the issues I was having--and I don't have the muscle loss in my legs you have.

The more you try to do--the weaker you're going to get, I think--although I'm sure that's not what you want to hear. Can your facility perhaps get you an assistant to do the majority of the lifting and bending?

The ALS association might be able to help with ideas on getting some hand-controls for your car if they are needed. Again, I had to stop driving almost entirely--I can't control my legs fast enough to feel safe.

They can give you a brace for your foot--to help with the foot drop--an AFO. I'd also suggest a cane or a wheeled walker to prevent falls--falls are very, very bad, believe me.

Wish I'd had something more positive to input :(
 
Thanks so much for your reply and your thoughts Notme....I have gone over your response a few times to say the least, and please don't take that in a bad way, it has just given me food for thought so to speak.
I don't think I am so bad as yet to give up driving. I am somewhat okay for short distances and I am doing alright between the both feet and asking for someone to drive me. I do know that I can't do distance or in traffic at all....I know that, and it is a hard thing to give up.
In regards to work...my job as a T.A. or now is known as an E.A....well sadly...I am the person that is supposed to be helping these young children into and to grow in their/natural environment, so kind of ironic that I am the one that needs assistance now. It is not an option for an aid to ask for an aid. This year I have applied for the classroom assistant and just the other day was given that position...so I am hoping it will be less physical for me. I do know in my heart of hearts that this is probably going to be my last year of working outside of my home. I have a wonderful co-working environment and it has been a blast all these years, but I am seeing where they are covering for me and that isn't fair. I just need to deal with this in my head and heart... then I can let go of it. I am at the point where I can hardly help the children write more than their names.
Wow...I am writing this and realizing some things all at the same time.....who am I really trying to help here? So sad, I guess I am not as useful in some regards as I thought...but my brain and heart is still there, so if they are willing to deal with the difficulties then so am I.
Thanks for your thoughts though......they really have given me pause to think because ultimately it is my family that will help me. Maybe I should be giving them more time now, now sure.
 
Willow, I just want to reassure you that it will all work out, with all the changes we all have to make at one point or another it helps to get others opionions and perspective it definately helps in the process. But non the less they are hard to make, and you were right that it has to travel form the brain to the heart for acceptance. You are not alone we are all dealing with the changes to our lives together, helping each other the best we know how. I had to stop driving because I did not that one mistake of not being able tor react fst enough in an emergency and did not want to endanger others lives. I so enjoyed my independance but am simply adjusting because I have too. For me it is just something new, a new challenge to overcome with every change.{{HUGS}}
 
Changes are very difficult, but you do get used to them. Just in time for yet another change you're not ready for. I'm barely driving, and frankly, only to my Mom's house basically. My right foot was fine for quite a while, but now that it's dropping, I very cognizant of the fact that my time is limited. I put a belt around my thigh and hold it with my hand just in case I need to react quickly. I do it automatically now. If you can lift and push your leg you can try the belt idea. If your leg is too weak to push hard... and fast... do not attempt it anymore.

I also use alternative methods to make my muscles feel better, such as using high-quality magnets, and doing reikki. You'll find something that helps, whether it's yoga, etc.

I know there's no way I could be working with little kids anymore, unless they allow you to have a scooter or something.
 
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