Irritating movements

While getting my husband ready for bed, he was shaking his feet to try to make his slippers come off. I found this very irritating, as it made my job more difficult. I asked him to stop, but he carried on. I got more irritated, then he managed to say, "When you tell me to do something, I can't do it straight away." I thought I would share this, as I realised that PSP sufferers are not necessarily being awkward, they just need time to process the information and act on it. Food for thought! X

24 Replies

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  • Found the same with my mom, she moves her legs every so often, no her jaw moves constantly. I ask her if she is in control she communicates she isn't.

    TV at this point can't been seen, she listens, but doesn't comprehend all what is being said as it goes so fast for a slowing mind.

    She also has been slowing way down with her thoughts, can't remember what she wants ed to say, seems to come out when we have to go. She starts communicating, wonder if the emotion of leaving stirs her neurons?

  • I have read your post to my husband , he replyed thats right you need to give me time to answer, it takes time for me to compose the sentance.he was diagnosed with psp last October. We think he's had it for about two years. as time goes by I forget and expect him to answer me strait away.hence I get short tempered with him some times.while we can still get out and about we go out for coffee or we lunch which we love to do.

  • That's one of the things that we noticed with my husband before diagnosis about 4 years ago, he would reply way after we were done with thtat part of the conversation! I thought it was ministrokes.....

  • Thanks Robbo

    Liz has something similar with her hand. She will start to scrape food from the back of her bowl to the front and the movement becomes rapid and repeated and it takes her time to stop.

    When she was being assessed by the neurologist one of his tests was to ask her to copy him. He held his hands up to his chest and clapped once. She did the same and then he clapped three times rapidly and she started and could not stop.

    I don't know if these are the same sort of thing.

    but I do know I have to work on being patient with her quite a bit.

    X

  • The brain....I looked at autononomic responses (clapping is not one of those) and found direct links from the brain stem to the response areas ie tempurature control respritory control.....the heart...clapping and other commands of that nature I'm sure are somewhere in there...are they executive order...how to solve the problem and then solving it?

    complex and down right interesting

    AVB

  • Wow AVB

    I think the phrase 'above my pay grade' comes to mind. :)

    I got the 'complex' bit though - and yes it is very interesting.

    I still have to develop a bit more patience though.

    You sound like you are reading interesting stuff.

    Please come back sometime if you come across bits.

    Kevin

    XX

  • I think I just googled autonomic response....it showed a map of the brain stem and spine and where those nerves picked up and, well, put down....I do try to read some professional stuff but end up just rereading the abstracts over and over.....My autonomic brain may be ok but my IQ is limited! hahahaha

    AVB

  • Chuckles - Mine too!

  • T SI DIFFICULT TO EB PATIENT WHEN UYR OTHER HALF DOESNT WANT TO DO AS YU Say

    EPSECially when thy only have your best interests at heart .;lo jill

    xxxxxx

  • That, Jillannf, is a peach.

    It should be posted on every door in our house.

    Liz laughed like a drain when I read it to her.

    Thanks

    XXX

    PS - She has taken to saying to me now... Are you here to stir trouble ;)

  • Well said Jill, I will remember this when I think Ben is being a bit stubborn.

    Love Kate xxx

  • SORRY SBUT THE TYPOS

    AGAIN

  • Jill, no need to apologise about typo's. You are an incredible lady who is an inspiration to all. Long may it continue! X

  • Kevin,

    Yes, these two things do sound the same. What an interesting example. The applause sign is an indication of motor perseveration.

    Robin

  • Oh, thanks Robin - I didn't know that.

    Kevin

  • Your husband is so right R1....It would frustrate me back in the day when expectations were higher....But for the shaking I found a good massage or even pressure against the body part thats shaking helps alot....

    Staying calm in Arkansas

    AVB

  • Thank you all, for your replies. We are learning all the time, aren't we?

  • Thank you for the reminder. Sometimes I have so much to do I can get in a rush, I have to remember how difficult it is for him to keep up. Physically and conversationally.

  • I had to learn this the hard way too. Made me feel so bad. Showed me to have more patience.

    Gracie girl

  • I needed this reminder today. I get so impatient when R takes too long to answer my question or respond to a comment from me or a friend. When he doesn't take the appropriate action to move or even something as simple as "hand me the TV remote, please" as quickly as he did in months and years past, I find myself thinking, "what is taking you so long?" Poor him, and shame on me. Thanks for the timely discussion.....guilty as a career, and ashamed that I must admit it. Time to change and allow more time for the guy I adore - who can't help he has been "gifted" with such a horrible disease.

  • Yes, we have to learn not to rush things, don't we? This has been one of the hardest lessons for me. My husband used to say that I had, " no quality of repose ", now I have to make myself wait or chill out, it isn't easy when there are always jobs to be done. X

  • Chris always says " you must give me time ". Its so different to how he was and must be incredibly hard for him. I get impatient too !

    Will try more. - - - until the next time !

    x

  • Friends called B ," the boy racer" , when commenting on his driving. He was always doing something, planning something or going somewhere. I was happy to go along with it all and miss this aspect of our lives. I'm amazed at his acceptance of his lot, although he has said that he is hoping for a cure to be found. X

  • we have 2 accept it in the en[d don't we??

    TINA!

    lOL JILL

    XXXXXXXX

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