Behavioural changes first in PSP

[Cooper0212]

Hey, my mum was diagnosed with PSP in 2021, she was 68. Prior to diagnosis we were convinced mum had frontotemporal dementia because it was her behavourial changes that alerted us that something was wrong, we fast tracked a neurologist appointment after something showed on a brain scan, which turned out to be the hummingbird and so the PSP diagnosis was made. Mum lives in a care home, has a disrupted sleep cycle, shuffles but can still walk, is double incontinent although able to use the bathroom, she bites her arms, is liable to choke and sometimes struggles to swallow but her confusion ie her sense of where she is and why, and behaviour changes ie apathy and becoming social withdrawn etc are dominating. She speaks less and less but not because she's not able? And I suppose I'm just wondering if this was anyone else experience? Mum has no awareness of what is happening to her, which I understand is rarer for PSP.

There was some atrophy on the brain at the time of the scan so we know we are also dealing with dementia. Her PSP symptoms appear to be progressing slowly, there have been no very significant changes in the last 18months.

I'd just be interested to hear if anyone else had this experience with PSP and just how the illness progressed, because when I google I can never find what I'm looking for I suppose.

Thanks for any thoughts x

[Gingerw3]

They thought my husband had FTD also. He had impulse and sexual "behaviors." He also had dementia and cognitive decline. He never understood that he was sick and asked to go to work daily. He was 55 when diagnosed and lived the last five years of his life in a care facility. His autopsy confirmed PSP but in an abnormal way and also stage 1 alzeimers. Feel free to message me. Sounds like very similar paths. Blessings 💜