My wife of 55 years was diagnosed with Parkinson’s disease in 2012 in 2019. She was diagnosed as having M multiple systems apathy. In September 2024, she was diagnosed as PSP.
She can still use a walker but her feet freeze to the floor and she can only walk for a short time. Therefore, we use a.
I have noticed that since October this year that she will sometimes be sitting in her recliner and will start talking and moving her is asleep or hallucinating. The first few times this was I would say scary to me. Does anyone else have a loved one with PSP that this happens to.
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Flatprairie
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I’m sorry to hear about your wife. My hasband has PSP and when sleeping can start reaching for things or suddenly lift his arm and shove it to the side. The other day he kept putting the remote control in his mouth and I asked him (even though he was sleeping) what he was doing and he said -‘ice cream’. He has also fallen out of bed due to dreaming that he was playing football with his brother and doing a sliding tackle. Thankfully he wasn’t hurt. I did talk to our neurologist who said that this was part of the illness.
It is scary to see initially - but part of the illness and, as long as they are safe, it’s okay. Take care
Thank youToddet for the reply. Your husband does a lot of activities.Do far wife is just talking and moving her hands. Yesterday while sitting in her chair watching TV she started moving her hands and mumbling. I asked her what she was doing as she said reading a book.
Her eyes were open but she was dreaming. Thank you again.
You may find this device useful to lessen the chances of your husband falling out of bed: it was prescribed, and paid for, by my occupational therapist attached to the NHS. It's held in place by a plate attached to the bottom of the handrail going under the mattress, with straps under the bedframe to further secure it. It also helps me getting out of bed.
A metal handrail attached to the right-hand side of a bed, its securing straps visible.
These are the informations I have collected from this chat hopping can be useful:
*Hallucinations.
Joluu wrote: “Episodes of confusion and hallucinations have been triggered by infections so my first thoughts are to get him checked by a doctor to make sure there's no infection.”
KatieHelles wrote: “My step-dad has PSP and does have the odd period of confusion thinking that he needs to go to work or play rugby (with some determination sometimes!). This can be part of the condition and passes in time, it can also for my step dad be more likely to happen when he’s tired and overdone things or unwell with a virus/infection so again always good to try and check whether this is happening in the back ground. The confusion usually passes within a few days in our case. General advice would be to go along with the confusion where possible we would call a friend sometimes and they would reassure my step dad that rugby was cancelled today so he didn’t need to get ready. This reduced his agitation a lot as telling him he doesn’t play anymore just increased his distress unnecessarily. Also having lots of familiar prompts around might help him in the home photos objects etc.”
45purple wrote: “Hopefully when settled he will not be as confused just have to remember at his age it’s a big change for him being moved and he won’t recognize the surroundings.”
*Outbursts of laughter or crying
“daddyt” point out: The outbursts of crying, or as in some cases, laughter, are known as the pseudobulbar effect. It's a symptom of CBD (S) and, in my case, PSP. Not all patients will experience it. I'm not aware of any specific medication, but I suspect depression medication might be helpful.
“Keepbiking” say: check out (PBA; a condition of sudden, frequent outbursts of crying or laughing that can not be controlled) A combination of dextromethorphan and quinidine may help. Nuedexta in the US. Very expensive in some countries so some have it made up in a compounding pharmacy.
“Bergenser” Point out: I recognise this, my husband moves and talks loudly - and sometimes has wide open eyes - during sleeping / dreaming. Sometimes this can become frightening eg when he seems to act out running or fighting - and might grab my hair or my throat while kicking or punching. I believe this is REM sleep behavior disorder (RBD) which occurs in many PSP patients. (14-33% according to CurePSP summary article). This started before his PSP diagnosis (as did other sleep disturbances). I suppose it's "just another symptom" that could occur sooner or later. Melatonin seems to be generally recommended/tolerated to address these issues. Personally I try to ensure that if we watch television in the evening, that it's not something overly intense or aggressive; the dreams seem more pleasant after listening to music or watching something funny, gentle and calm.
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Mum diagnosed with PSP yesterday
My lovely mum is deteriorating quickly. Any guidance appreciated.
~Am I really?
Care options? - Refused CHC - dad cares for mum 24/7. 
Deterioration
