From wikipedia. . “Progressive supranuclear palsy (PSP) (or the Steele-Richardson-Olszewski syndrome, after the Canadian physicians who described it in 1963) is a rare degenerative disease involving the gradual deterioration of selected areas of the brain.”
It all started over ten years ago, my mother who was in her mid forties began changing quickly. The summer im referring to is still in the back of my head, she would get angry all of a sudden and would get quick mood swings, we all noticed it. The first thing that came to mind was, ” yeahh shes going through menopause, its just a phase”.
This phase, lasted a few years. . And it was difficult for the whole family, our caring and loving mother turned into a different person. A person, who didnt show interest in the things that mattered before, a person who didnt want to socialize as she did before. It was the beginning of psp, the signs were there, but even the best doctors couldnt pinpoint it until 7 years later.
That summer was when we realized mama would never be the same again. . .
progressive supranuclear palsy 
What I found most frustrating was the many years spent and different specialists we had to visit before we got a diagnosis. Kuwait, Germany, Egypt, Qatar, Saudi Arabia, the UK and Turkey. We finally got a diagnosis in June 2009 at Johns Hopkins Hospital, which was confirmed by the second opinion we got at Brigham & Women’s Hospital.
At least with the diagnosis, now we knew what we were dealing with.
Sort of.
As you said, it has helped somewhat after the diagnosis, at least we know what to expect, and how things are going to play out. . at least we dont have to keep going to different doctors to figure out whats wrong with mama.