PSP Association
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Morning is best

Just a quick question. When Brian gets up in the morning he is more able to stand etc as the day goes on he is less able to weight bare. Even after having an afternoon nap he is still dodgy on his pins. By the time the girls come at eight he is hard work to transfer and stand up. Any one else noticed anything similar. Janexx

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Reverse for Veronica-mornings and night times are her worst . No patterns for this wretched illness at least not consistent ones.

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Thank you for replying. You are correct about no pattern Brian is unable to walk can just about feed himself but can still talk has trouble swallowing and his memory is very poor. Yet others can walk but not talk so it's a case of guess what is next Janexx

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I think if you have any illness as the day progresses it gets worse. I know that when I have a cold and think I am over it, about 4:00pm I start feeling sick again. Also my Bob might be pretty content all day but hit 3:00 it all just goes down, walking included. With dementia they call it "sundowning"...I just think the body is tired. But it really is a phenomena

Jill.

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Hi Jane, yes I can say that the same thing is apparent with my hubby. He starts the day off fine but as he gets tired he isn't quite so good at getting up first time from the sofa. He so wants to remain independant and we have devised a way that seems to work most of the time for him, once he stands up he stays still for about 30 seconds before moving and that seems to help his wobbles, also if he changes direction he again stands still and allows himself to steady before setting off to his desired destination! The thing that I hate is the shuffling silly mini steps that he seems to take - I can see this makes him wobble and am now telling him to stop the silly steps, he walks so much better then, but says he doesn't feel confident - so we keep persevering with it all.

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So does seem as if it is the psp because I did wonder if it might of been Amantadine because he takes that at 8am and then again at 2pm. We are going to have a couple of days with no meds to see if it makes any difference. Janexx

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the shuffles are back im a shuffler as well ,mate and my physio lady told me to turn around then stop and go on your merry way matey I think this is a problem with all psp people once you get going you re not to bad its just getting going mate she used to put two chairs a little bit apart from each other then I had to walk in a figure eight around the chairs then she would say stop then I would have to turn \without shuffling and then move off again with enough room for your body to go the gap in the chairs you cam do it

by yourself as well but i think we tend to cheat and say stop at the easiest places to turn

you want to give it a go its a cheap way to do something as you have the dining room chairs I hope that's if he has not wrecked them \ive done a couple of doors in and a few walls that have got switch cover plates over then now which I do not think is odd if you are a 2 foot six midget that can reach a light switch blanked off well mate thats it for now I hope you try the chairs its give it a go and inexpensive\\\\ bob stick with it mate

take care both of you all the best see yer peter jones queensland Australia psp sufferer

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hi jylgirl well mate you and peter are not alone mate I think I can walk quite well with a walker frame in the morning but when I sit down and want to, get up again I have to grit my teeth because I find that I cannot support my own body weight I am close on 12 stone in the old scale and if I fall over I find that I cannot get up at all my wife who is only slight build cannot lift me she goes over to the neighbours house to get him to lift me up if he is not home I get an ambulance out im afraid I do not like doing that but its that or stay on the floor sometimes with painful consequences otherwise life is not to bad at present I mean I have a fair bit of other stuff going on as well but cannot complain matey nobody really wants to listen anyway do they \\\\\tell peter to hang in there mate I will not be beaten by some moth eaten desease that I never asked for in the first place well mates take care all best wishes to you and peter and a very'' happy Christmas'' to you as well while im at it peter jones queensland Australia psp sufferer

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My husband is a very wobbly walker most all day, not much difference morning vs. evening. He tires so easily. Yesterday we did some errands & he walked around store, after which he was weak & exhausted. It seems he has no stamina. So sad to see him slipping away like this.

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I ALSO FIND IT SLIGHTLY EASIER TO GET GOING IN THE MORNING BUT HAVING SAID THAT I FOUND IT VERY DIFFICULT TO WALK ALONE THIS A.M AND NEARLY FELL AS I REACHED MY EXERCISE BIKE WHICH I HOLD ONTO TO DO MY EXERCISES -- NO I DONT ACTUALLY GET ON IT VERY OFTEN WITHOUT MY HUSBAND BEING THERE !!

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Much weaker in the evening. Some days worse than others, barely able to hold my head up, staggering so that my wife, one of those "Jills," can hardly support me. She never leaves my side when I'm on my feet. Worst day was when we missed afternoon pills, including Amantadine. We'll be interested to hear how jzygirl's experiment works out.

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Hi Tz2388 just thought I would let you know Brian didn't have any meds today and he was able to stand and transfer all day today. Even the evening carer's said he stood well tonight and I hadn't told them about the no meds so possibly the Amantadine does not suit him. Will give a progress report later in the week. Janexx

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JZ, Fatigue is one of the symptoms of PSP that you don't hear much about. Yes, one outing and it can take the patient two days of rest to recover, or more! Jimbo

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