My mother passed away from PSP in 1991--at the time it was virtually unknown. It was only after MRI's came out and became available that we were able to obtain a diagnosis. She started out having balance problems, and we started out going to ear doctors, thinking it was an inner ear problem. I would say it was 8 or 9 years from the initial diagnosis, but all the symptoms were there--slurred speech, tunnel vision problems, falling, rigidity. To this day, I know very few people who have had this--we were told mostly men develop it. I know Dudley Moore passed from this and tried to bring attention to it before he died. While working at a hospital, I was told PSP is an "orphan disease" meaning that because not many people develop this illness, research companies are not willing to spend money on research as they will not make much money in the medication it sells. Very sad indeed.
While my father was unable to afford an autopsy to further the study of her condition at the time of her passing, I often wonder if it had anything to do with the fact that she poured lead at a local factory for years, leading me to wonder if she developed lead poisoning prior to the onset of this disease.