My first time posting. My husband was diagnosed in July at age of 57. Problems for two years and diagnosed with everything from despression, bi-polar, MS, parkinsons until ended up at Duke in Durham NC and there he was diagnosed with PSP. He is experiencing a couple of symptoms I have not been able to find anywhere and just wondered if anyone out there has dealt with this: He cannot be still, unless lying down. He says his insides are always jumping but outside he is not. He is up and down every ten minutes or so. Also, he walks and stands with his hands bent inward at the wrist, like cupping but he can still use his hands, just has problems with things like buttons, scissors, knives, doing anything small or tedious. And I do see if spread his fingers and hands outward so I know he can but anytime he walks or just stands up the fingers are cupped in. Has anyone seen this with PSP? Thank you for your help.
Jitteriness and Cupping hands with PSP - PSP Association
Welcome to the site - the one no one wants to join but one I hope you will find as helpful and supportive as I have. Sounds like you have already been on quite a journey.
The impulsivity and inability to stay still are really common in PSP. We found fidget toys really helpful particularly in the car or whilst sitting in a chair. I have not had any experience of cupped hands - one to ask the Physio. It would be good now you have a firm diagnosis to get set up with a physio, OT and SALT so they can help you both with strategies for living with PSP. On a more sensitive note now would also be a good time to look at your financial affairs and decision making. In the UK we have Lasting Power Of Attorney where a spouse can make decisions for their other half for both finance and health, you set it up but do not have to use it straight away.
Lots to take in currently for you I am sure.
Don’t forget to look after yourself too.
Mom occasionally becomes restless at night, wants to keep turning in bed even though she could barely do that, results in endless groanings, or when she watches TV and couldn't stop moving in chair. She says that she feels agitated, sometimes with a hot flash. It could be the medication causing all these, or PSP, but this is definitely something expected.
As for cupping hands, we were being told by doctor that is muscle rigidity. Mom does that exact same thing you described, and I've noticed even her toes are curled up like she tries to use those to have a frim grip to ground, except not really doing the job.
Something else you might be seeing is it is harder for patient to bent their legs properly, for example, mom stretched her legs under a coffee table a few times and just couldn't bent them to move out of that position, had to move the table for her.
Hope that helped to answer a few of your concerns, but always make sure to ask them there is no pain.
Hi definitely seen the cupped hands and he closes doors with his hand in the wrong side of the door. He has problems holding anything including knives forks etc but his hands are very strong. This PSP is very difficult to cope with especially for Carers
It elementary, it’s over the counter, but I found for my ex “turmeric” is somewhat helpful with joint related issues. Good luck. Oh I’m soo sorry- ny ex went through years of misdiagnosis as well, so much so it was a relief to get one- just to know what’s happening made it easier- no one wants PSP but it is a solid path.
We both thought “the unknown” brought too much stress.
I am sending our experiences by internal PSPA chat hoping could be useful for you.
Hug and luck.
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