Ankle fracture

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Eliza B

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Joined
Nov 14, 2024
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Reason
DX MND
Diagnosis
10/2022
Country
AU
City
Melbourne
Hi. I was diagnosed with ALS 2 years ago.
Starting with left foot drop and slow progressing leg weakness in ankle and quads.. foot drop started 2.5 years ago. I don’t have twitches or cramps. My upper body strength and breathing is fine My progression is slow and have no idea what’s around the corner. That’s depressing also no positive advice is given, in fact nothing positive full stop.
Because of leg fatigue at the end of the day, my ankle gave way and I broke my good ankle. The surgery has set me back as I had to stay off my feet for 2 months. Trying to regain the strength I had, not easy. Any ideas would help.
 
Hi, Eliza, I moved your post to its own thread since you were not really responding to the thread you posted in.

It can be nerve-wracking not to know what's around the corner, but whatever it is, it's not here yet, so my best advice is to live your life as well as you can, while you can. If your clinic is not keeping you apprised, you could look on line for Australian trial sites. The link is here:

clinicaltrials.gov [Australian trials]

Are you taking precautions against more falls -- a rollator or something like that? And for your ankle and reconditioning, do you have a physio?
 
Hi,
Thanks for the reply. Lucky me, I am on a trial - PT5-858. Cardinals.
I was on the trial for 6 months ( placebo or the real thing) , now doing another 6 months on the real thing. . This ends 10/12/24. They are then offering me a further 2 years. Hopefully I will get the results of the first 6 months soon, apparently they have just closed off the 250 participants around the world.
I was using walking sticks when I fell and broke my good ankle. It was around midnight, I climbed the stairs as usual, left the landing and fell. I ended up with 2 broken bones, with a plate and 8 screws. Lucky for me the ankle has healed well.
After surgery. I used a wheel chair and still do. I now have a leg brace and am trying to regain my strength to walk again ( with rollater). I am not finding it easy, it’s like learning to walk again.
After a few more falls with ankle or quads giving way, I am getting more reliant on the wheel chair, less confident and somewhat depressed at times. Not knowing how much strength I will gain is what gets me down.
 
You are not alone in this. I hope that more strength will come back!

My PALS fell down the stairs one time - without a prior warning sign - head first. Luckily that time he did not break anything. After that fall he did not do stairs any longer. He was a very careful, safety-conscious person by nature. Another time he fell backwards while using the walker and broke his upper arm. That was the end of using a walker. These falls were unpredictable. There was nothing he could do to prevent them because the movements had been possible until one day they were not. The sad thing was that they painfully highlighted the loss that was happening with this disease.

It differs how much strength can be gained back after an injury. It probably cannot be predicted. It can happen. I guess the overall goal is to avoid falls.

When my PALS did not know yet that he had ALS but he did notice that there was something different with one arm - he started to use hand weights daily for a while and tested how many times he could do a certain movement. He gained some strength in one arm over time but not in the other.
 
I've sprained both ankles and each time it was my own carelessness. I still have strength to walk but not very far. I use my small power chair for anything outside the home.

My right ankle gained most of its strength back because I was still walking a lot at that point. The left one, not so much.
 
Hi Regina,
Thanks for your reply. I am not dissimilar to your husband. I used my walker the other day and my quad gave way, I fell. I am sticking h my wheel chair for now and considering buying a recumbent exercise bike to keep my legs moving and hopefully get a little stronger. Its so unpredictable when your muscles give way. I dont want another set back like the broken ankle.
 
Hi Kim, I think my broken ankle will fully recover, not the weak one, so similar to you. Last week, I did some practice walking inside with my rollator and a leg brace for my weak leg, my quad gave way and I fell.
Every time I fall I lose confidence.
I just need to figure how I can drive again. Before the broken ankle I was able to walk with a walking stick to the boot to get my rollator . Now I need to figure out how I can get to the back of the car to get my wheel chair out??
 
When I was still walking some, I used 2 forearm crutches when driving. I could get to the back of the car, unload my featherweight chair and leave the crutches in the trunk until I returned to the car. It worked well until I had to stop driving.
 
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