Dr. Golbe fashioned the PSP Rating Scale and Staging System almost 10 years ago. It is widely used by doctors and researchers to mark progress of symptoms. Researchers often use it when testing the effectiveness of a new drug. They will administer the test; the first time establishes a baseline. Then they will redo the test in three- or six-month intervals. The idea is to compare ratings of the latest test against the baseline results to see which symptoms may have improved, stayed the same, or worsened, and how long it took to see change for better or for worse.
It is not an exact tracking method because of the subjective element in some "borderline" flip-a-coin choices or when examiners change or when caregivers or PwPSP give inaccurate representations, but overall, it provides a useful assessment.
I wish I had discovered it years ago. Even lay people can use it to track progress of symptoms, I think. I printed a copy of the questionaire today, answered the questions (several I was unsure about but chose an answer anyway), and then I sat down with wife Rose and had her answer them, too, as I read her the Q's. Remarkably, our answers were the same on most questions. Diagnosed 7 yrs ago, she is in what I call advanced PSP. So her total score of 74 (including max'ed out ocular and gait scores) is understandable, as is her '5' (worst) on the staging system (gait) analysis.
Then together we went back over the test, =trying= to remember how she would have scored 6 or 8 months ago. We probably would have scored closer to an 80. Recent improvement in swallowing and choking and in limb movement would account for the slightly lower score of 74.
BUT we see a glimmer of hope even in the worst-level 4 readings. For example, Rose can now occasionally open her eyelids voluntarily, follow my movements sideways, and identify the number of fingers I hold up, most colors, and some objects -- if they are not low. She can't see downward during these fleeting periods of distorted vision. They last for maybe only 20 minutes or so at most, and they don't happen frequently, but hey, we still jump up and down and cheer because she could not see at all for months. The occasional short-lived changes are not yet enough for her to move from a 4 to a 3.
Also, we've seen an apparent slowdown in progress, or worsening, of symptoms -- she's been on her current "plateau" for an unusually long period.
You and others here may want to download and print out the ratings questionaire, and score your PwPSP. Then do it again at six-month intervals to track changes. A useful reference tool.
NOTE: You need Adobe Acrobat on your system to view the file once you click to read or download it. Click on the Print icon in Acrobat to print it out. Several Adobe Acrobat viewers are available online (no charge).