Hi everyone. Have any of you come across this before. My hubby ger is still taking a very low dose of sinemet even though he has PSP, and a low dose anti depressant, sertraline, plus BP meds. In the last few months he has asked me twice if I was in his bed, he is on his own in a hospital bed, and of course I wasn't. Then he said he'd been to the toilet and got back into bed himself, which is impossible as he has a convene and can't get out by himself anyway as he is relatively helpless and the bed had the sides down. Then on two occasions he took his PJ bottoms off. Sounds simple but he is so awkward, stiff and not able to help himself that i can't get me head round how he did it from lying on his back. Are these things hallucinations or a normal progression of PSP or delusions. Strangely every time we see his consultant she always asks about this kind d of thing and I say no, but we're seeing her on Tuesday at the parkinsons unit at edgware community hospital so this time I'll say yes. Any clues from you encyclopedias of symptoms. Thanks in advance.

19 Replies

  • My man had CBD and was on low dose Sinemet and in hospital like your hubby. He told me he had got to toilet by himself and put a new pair of pj's on by himself. Like your hubby he could not have done it!! At other times in that week he was perfectly normal. So I think it is quite possible these were/are hallucinations! It happened more frequently as time went on

    I felt it was possible that his poor brain ignored the reality and imagined what he would have expected to happen and reported that as 'normal' rather than the reality - which was unacceptable to him!

    So, yes it does happen. Not necessarily because of the drugs, but perhaps because of the horror of the reality!

    It made sense to me at the time - if I interpreted the hallucination that way. Hope that explanation makes sense ? !

    Hugs! Jen. XXXX

  • Thanks jen. Sounds maybe a normal progression then.

  • Hi Duffers, yes I think a lot of our loved ones have had hallucinations. With C they stopped with a change of medication. In the top right hand corner of this page is a box "search PSP Association ". If you enter hallucinations you should get all past posts on the subject. Lots of others will reply to you here though. I hope his consultant can help.

    My hubby did manage to do lots of things when he was asleep that he couldn't do during the day, including removing PJ trousers. He doesn't wear any now.

    Hope you get this sorted.


  • Thank you NannaB. I will write it all down and give it to her. I just haven't got over my anxiety, for want of a better word, about saying these things in front of ger in case he gets upset.

  • Hi. Next week it will be a year my husband who has CBD no longer feels I am his wife. Not one memory of our 55 years together . They said in the ER it was delerium and would go away but it never did. He knows others most of the time.?he has pernicious anemia.

    Takes seroquel for the hallucinations. I am broken hearted.

  • Oh dear. Reading this has made me a bit teary. So upsetting for you. How on earth do you cope. I'm not sure I could.

  • Aww duffers your husband sounds like my dad!! Thinks he been out of bed and walking about when he hasn't! Sees rats on the floor (I can assure you we don't have any) ! Is often talking nonsense and seeing things, all a trifle worrying and no current infections.....Im sorry darling I dunno what the answer is, dreaming, hallucinations, vivid imagination or just bloody Psp (most likely)! X

  • Yes, my husband often tells me he has done things during the night. Men fight under his bed, he chases them. He also often thinks he has been playing tennis with his brother.

    I just think its sort of dreaming and its difficult to separate reality. I often feel its good that he thinks he's been playing tennis.

    Jean x

  • Didn't realise how common these symptoms are. Thank you all for your informative replies. You're all wonderful.

  • Hi Duffers, S use to think leaves were spiders, rats, anything that ran around. When we were in South Africa, I got woken up, "there's a mouse in the bedroom?" " Yes Dear, of course there is, go back to sleep!" After several elbows into my ribs, I gave in and got up to get rid of said mouse. Yes, you've guessed it, there was this sweet little mouse staring up at me! I'm not good with this sort of thing, it was S that dealt these matters. But, to cut a long story short, I managed to escort this creature off our premises. I now take his hallucinations, a bit more seriously!

    Please, never make the mistake of thinking your husband can't do something. Every single one of us have scars to prove that wrong!!!

    Make sure you do write everything down though and tell your consultant.

    Lots of love


  • Oh yes heady write everything down!! We do from waking to sleeping to food, drinks, medications, strange things dad says, visitors, carers times coming and going, awe it never ends!

  • Thank you both. I will write it all down now.

  • isn't it the strangest thing! it happens must agree kae life easier for youself rog sleeos commando, he would be horrified if he knew you all knew!!!!!!!!!

    have a great day

    julie x

  • I shouldn't be, but I am smiling. Thank you for that.

  • Hi Duffers,

    The hallucinations could be a side effect of the medication... you'll need to discuss it further with your doctor. I was on a medication last year for my cognitive decline... Aricept that was prescribed by my neurologist. While it helped with some of my confusion, I experienced very violent nightmares where I would strike out and wrestle with my pillow and then some. On my next visit to the neuropsychiatrist, he took me off that medication and introduced another one instead... happy to say that seemed to do the trick.

  • Thanks daddy. We are seeing his consultant on Tuesday so I will raise all this and see what she comes up with. I'll post her answers then. Take care

  • I have been hearing from my husband for a few years now about "the children hogging the bathroom"(we have no kiddies), "the men in the corner of the bedroom"(no visitors at 10:00 p.m.!), "his Mother sitting at the kitchen table"(that really shook me up-) and "it's time to feed Spike the dog or let him in/out" (we do not have a dog). And, of course, once in a while he will tell me about something he has done that I know is impossible. And then he WILL do something that I didn't think he could do like shimmying with upper body strength, past the bedrail down to the end of the bed get out and up and into the bathroom! All of the hallucinations come and go and I just deal with it by agreeing with everything and they go away in a few minutes. I believe it is the dementia that some people get with Parkinson's. So far they come and go so I can deal with it. Honestly, when it gets worse I wonder how I can handle it. I am sending you hugs and strength from up above.

  • Oh my god. Dementia on top of everything else. Is there anything left that they haven't got. I'm sending you hugs and strength as your situation sounds so much worse than mine. Take care of yourself

  • Mum has had a few "strange" moments where she might say..... "Are you coming in the taxi with me to the restaurant for dinner?" There's no dinner, no taxi and I am on the phone a 10 hour drive away!..... Her next comment will be "Oh dear, I think I just lost the plot didn't I?" So she is aware that she zoned out.... She has also had a couple of vivid dreams/hallucinations where she thought my dad (who died 12 years ago) was in the next room calling her. The next day she is aware of what happened and calls it a dream. One time at 3.00am she got up out of bed to iron her uniform for work and she hasn't worked for years....

    Love to you x

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