PSP Association
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does anyone experience these symptoms with their loved ones with PSP ?

Falls backwards.Falls sidewards. Falls almost everytime she gets up.spills her food when eating,but knows she does and goes to clean it up straight away.get annoyed with carers and me for following her around to save her falls.because she is in her house she is always seeing things to do and wanting to do them so putting her life at risk. keeps asking for space.does not sleep well,so gets up in night.goes from normal in mind to seeing things that are not there. will not settle in the day the list goes on !

6 Replies

Hi Highhopes, perfectly normal I'm afraid. My Mom exhibited exactly the same symptoms when she was at home. She is in a care home now, and although she is a lot less mobile and need to be fed by staff, she still tries to do things for herself and have falls as a consequence.

The falls are inevitable if unaided, all you can do is to make the surroundings as safe as possible.

Good luck mate



it is still hard just having 3 hours max a night sleep.thanks


I think anyone who reads this will identify with it! All horribly familiar. You may find, as the disease progresses, that falls become less of a problem because it gets to the point where they can't stand up without help - its a mixed blessing! :-(

I hope you have all the help and support you need - if not I suggest you contact your GP and get some help. You cannot do this on your own!

good luck



hi Kathy, got carers 12 hours a day and by end of shift they are done in.but the nights are not good for she will not settle for the drugs do nothing for her


Hello highhopes, Unfortunately all you describe is very familiar. My husband wakes many times a night although he does sleep for about 3 hours when he first goes to bed as he takes Temazepam. He used to have hallucinations but these stopped as soon as he stopped using patches behind his ear to dry up saliva. After 6 months of use, they started causing rashes behind his ears so the GP prescribed Atropine drops under the tongue instead. The hallucinations stopped immediately. Until then, I thought they were part of the illness. Now I read all the information about all his drugs and make myself aware of possible side effects, (and there are loads for each drug). The hallucinations did cause amusement sometimes though and we both laughed about them in the morning. One night he awoke in the night wanting to know who was sleeping between us. I finally managed to convince him there was no-one else there and he went back to sleep. In the morning he again asked me who was in bed with us during the night. I told him he had been dreaming and he laughed but said he really thought there was someone there and he only went back to sleep again as the other person was asleep.

It may be worth checking for side effects.



Unfortunately most of what you write also applies here, however ironically with one exception - the falls. For some reason my husband is defying odds for a little while and not falling (well not hitting the ground at least). His body movements - outside and in are slowing down considerably and effecting his general overall mobility. Hence he doesn't seem to fall as much for he doesn't move as much! Hey - but you gotta smile - He now says he's forced to sleep when in bed and can't fathom why I said i couldn't sleep when he felt he was doing OK with only 3hrs each night!



Perth, western Australia


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