Leg Stiffness

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Labinma

Active member
Joined
Sep 14, 2016
Messages
73
Reason
CALS
Diagnosis
06/2014
Country
Us
State
Ma
City
Boston
HI all, My husbands walking gate has been changing and today he complained of leg stiffness. Is this the beginning of losing his ability to walk? Thank you.
 
If the "stiffness" is that legs are hard to move, it is more likely. Transient pain could be from another cause. But if the gait has changed from before and is slower/less precise, I'd order a rollator now to make sure he has support when he needs it. And begin talking to your clinic about the process for getting a power chair.
 
Thank you so much. Don't suppose a time frame can be given? This disease is hard for the caretaker that is pro-active but the PALS rather not acknowledge. Do I go ahead an order these things with my Chapter that I secretly registered with, or do I wait to have a house visit by them and get him on board? Do I go ahead and just order what is needed and not say anything? Thank you for responding, this place is really my only life line during this journey. Lisa
 
We can't predict, but progression is often fairly linear during the "middle" stages. You would be a better judge if you graph things from before he was diagnosed, using months as the unit.

Having a rollator stashed doesn't require his consent and I would just do it. Order or borrow one based on his height. He will have to be measured much more thoroughly for his personal power chair, and would have to buy into a loaner just to use it.

Not sure how much in denial he wants to be, but might say something like, "You seem to be walking more slowly these days. I read on the Forums that falls are really dangerous for people with this disease, so I've ordered a rollator that can help you walk when you need it to."

And based on what you see over time, which you can also discuss via call or e-mail with your clinic OT/PT (if you are sneaky, you could send video), phase in discussions of a manual chair/power chair with the same kind of approach. If he is a slow progressor, you could also discuss a scooter option. The most important thing is to give him as much perceived control as possible, because ALS takes away quite a bit.
 
Thank you so much.
 
I always had equipment stashed ready in advance.

It's really important to avoid crisis.

My Chris had FTD and what would actually happen here is he would say he wanted whatever piece of equipment and when it would arrive he would look at me like I was stark raving mad and say - "I'm not using THAT". So I'd smile and put it away.

Often decline seems sudden, but it's actually that muscles are wasting and they manage for a certain period of time until it's like too many waste to support doing something. It wasn't so much that they suddenly couldn't, as they reached that point.

Then I could pull the magic piece of equipment out and we were ready.
 
Are you going to clinic soon? Amy would know right away if she watched him walk. She nailed my gait issue in about 30 seconds last year. When she said it it was obvious she was correct
 
In addition to what others have posted, cold weather can cause stiffness too. There is an old thread, This Cold Weather by wewillbeatthis on 2-27-2006, where PALS discuss cold weather causing stiffness. My husbands first symptom was noticed when he was outside in cold weather trying to scrape barnacles off the hull of our sailboat. His right hand would stiffen and he was unable to grasp the scraper. We moved from Maryland to Florida to get away from the cold.

vw-fl
 
As noted there are no common denominators in how we progress. I was diagnosed about 3 years ago and had symptoms about one year before. I am starting to lose my legs and know all to well about the " leg stiffness" you are referencing.

Cold is definitely a nemesis to this "stiffness" dynamic. For me standing in place tends to stiffen and burn my legs out faster than walking lately. Cramps are becoming more common in my legs.

One other thing I have started experiencing is a feeling of walking in mud up to my knees. It is like a restriction that really slows me down.

Just adding my unedumecated thoughts to this discussion.
 
Definitely when Chris could use his hands but they were weak, in the morning when it was cold they would be very stiff and weaker as a result. As the day warmed, they loosened up to some degree (he also had a lot of spasticity anyway).

Then we went into summer and he lost the use of his hands altogether.
 
Thank you all PALs and CALS. I simply can't imagine the sensation as it defeats through to absolute no use. I so appreciate all your feedback as it provides invaluable insight into what no one would know unless experiencing first hand. ��Stay strong all. And live in the moment meaning has taken in a whole new force for me.
 
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