A few days ago, I posed a question about duration of disease. Wondering if anyone had any idea of timeline. I received 26 replies..each one different. So, if you've seen one case of PSP/CBS, I guess you've seen one case. I think I asked this a while back and got the same type of answers but thought I'd check again, just in case someone had a remotely concrete idea. Nothing concrete about these diseases.
The article on the brain donation website spells out the disease in four or five phases. This is helpful although there are those that fall completely out of these categories.
Thank you, everyone, for your input. I'm so thankful for this community.
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journeyofjoy
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If you look at the research it is said to be about five to eight years. some folk here are into fourteen years.
However many other factors come into the equation. If the person is young and strong (say 55 - 65) they may expect to last longer than someone who is 85 and frail. Of course someone at 85 might not be frail and the 65 year old might have other serious health issues.
Then there is the speed of progression of the illness. Some folk progress rapidly asnd others less so.
My husband has been gone almost 3 years now, and I find myself always asking the question, when did it start? That’s a tough one.
If I include personality changes, which was his first symptom and completely undiagnosed and misunderstood, I would say it was closer to nine years. I always thought it was seven years from diagnosis, that seems to be the typical answer, but of course it depends on when they are diagnosed within the symptoms. I would say that when things became obvious, my experience was about seven years, maybe six.
There are so many variables, including will to live. I can understand wanting to know while you are in the throes of the disease. It’s a very very difficult journey for all concerned.
Sending peace and hope to all of those who live with or in the wake of this cruel disease.
Hi Karen - I agree with you- if we include the personality changes my mom would be about 9 years...we thought she was clinically depressed for at least a year with extremely irrational thoughts and behaviour- only to now realIze it was PSP all along. She wasn’t officially diagnosed until 3 years ago if you can believe it- but it has been 9 years for sure. She is now in the final end of life stage now...positively gutting 💔 all of it...
On reflection the early signs for Chris were there insidiously affecting him - whilst he was aware of dizziness.. I put it down to ageing - the difficulty in navigating, confusion and out of character selfishness and fatigue. Like Tippy he was investigated by a number of specialists. I suggested a neurologist and as soon as I saw the description of PSP it all made sense. If I'd known sooner I would have been more understanding with him in that period.
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New to this horrible disease 
Anxiety about advanced disease
This disease is so cruel
PSP - a rare disease in the family
