My mum has had PSP for about 5 and a half years now, although undiagnosed for 4 of those and she is doing really well considering. We were talking about it with her today. Her speech has actually improved recently and we are not the only ones to notice as two of her carers have noted it too. She can still swallow fine, although she coughs occasionally and she can walk with assistance. She falls a lot if she tries to walk on her own and her eyesight and depth perception seems a little worse but she gets up every day and still gets out and about in her wheelchair.
It has been 18 months since diagnosis and we have adapted to the new her in the light of her illness. I still get sad when I remember how she was and she has times where she gets very frustrated and emotional and those times are very, very difficult for all of us but we are doing ok.
I have just spent some precious time shopping and having tea with her in M&S and today I am just really thankful to still have her and that the progression is not as fast as we had thought it might be.
Love to all of you and Happy Xmas. I hope you all find peace over the holidays.