I really need to know if anyone else's LO is suffering like my husband with his whole body just going extremely rigid. He was diagnosed in February 2020 with PSP Also now when he sits on his stair lift as soon as it starts to go he starts to stand up while its going.
Obviously this is extremely dangerous we are trying all we can to stop him. When we question him about it he says it feels the right thing to do!!!.
Thank you everyone if you can give me any tips or answers as to why this is happening. It's very frustrating & tiring.
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Autumnstone
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Yes, I have extreme rigidity. It can get so tight that when I broke my hip this year that leg ended up shorter than the other because the muscle wouldn’t stretch to meet the replacement joint during surgery. I get more and stronger rigidity when I take muscle relaxers. It can cause what feels like electric shocks every two minutes or so.
My brain has somehow changed my body’s reaction to all muscle relaxers, which used to work for me.
Another thing that makes my legs super tight is marijuana which I sometimes use for sleep.
And they just go rigid on their own sometimes.
I take diazepam to relax the muscles, but not often.
I’m not sure if this will help but I try to phrase instructions for movement using one word like “stay”, “rest”, “wait”. I noticed that when I said things like “don’t move” my husband would focus on the last word “move”. Good luck with the stair lift.
Hi Runner333 I think you could be right there. I think sometimes that is what my husband hears.We did try something different yesterday, which was take leave the footplate up so he didnt have anything to press down on when he trys to stand up. Also put his hand that isnt working the stairlift on the seat belt. It seemed to work twice yesterday & this morning so we might have cracked it. !!!
Yes. The rigidity is getting horribly worse. I understand what you mean about the standing up. I couldn't even get my mother on her exercise bike, it was like trying to lay a 2x6 board against the seat. Year 8 here. She takes carbidopa levodopa and tizanide. Both have helped in the past...and still do somewhat, just not as much.
Strange thing, around Thanksgiving with the bike incident, I heard myself say for the fourth time that day, "It's like I haven't even given Mom her medicine." It dawned on me that I had just opened a new bottle. I explained to the Walmart pharmacist that she had a drastic change almost overnight. I requested some samples from a different lot. Of course, the pharmacist thought I was crazy, but complied. A few doses later we were back to our normal. Just a thought.
Hi, really sorry to hear this, it must be really difficult for both of you.
My Mum has started struggling recently with rigidity in her neck where it seems like the muscles in the back of her neck are stiff and pulling her head back permanently (not helpful with eating and swallowing!). Currently waiting to hear back from the GP who is considering Botulinum injections, something I've read mentioned for PSP/Parkinsons muscle spasms, but it may need a referral - so I'd recommend speaking to your GP if you haven't already!
Re the randomly standing up on the stair lift, this is something I heard about from someone at a PSPA support group years ago that we went to when Mum was more recently diagnosed - the carer said that a stairlift hadn't worked for her and her husband because he would just randomly stand up on it! We now have a stairlift and whilst my Mum hasn't stood up on it yet, I feel we're not far off that as she has started randomly stopping the stairlift for no reason and does weird things daily, like looking for non-existent things or trying to go to the toilet by herself or go somewhere, which she can sometimes explain but sometimes she can't. I'm afraid I don't have any advice to give about this, I understand how frustrating it is when it's so dangerous, my Mum doesn't seem able to learn not to do these things, but I really hope you can find a solution.
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