Hurrah! I did it! I was anxious and there were tears, but it's done. I did a talk for nurses and other health professionals at a training event on rare diseases. I'm relieved to have done it, and glad to have done it- if our experience can help anyone understand what PSP means, then it's a good thing.
If anyone is mad enough to want to know what I said, it's here
Now I feel I need to lie down in a darkened room for a while
All best wishes to you all, and many many thanks for all the support and encouraging words- it means such a lot