My husband was diagnosed with "probable" PSP by neurologist and a second opinion gave the same verdict. Diagnosis was 2 years ago. My GP has had no contact at all I have not been referred anywhere for help and did not even know of the psp association web site, found it by sheer fluke. When and where can I get support??? Who gets told I am caring, our next hospital appt is May. We are awake most of the night as he suffers with pins and needles and needs help in and out of bed. He is 70 and I am 69 with a bad back.he often falls it's hard to get him up. The stairs are difficult so is showering him.i don't want him in a care home but towards his last days if I can't manage will I have to pay for his care and sell our joint owned home. ? Where will I live? We have no savings.....so many questions so much worrying I feel the river beckoning some days , then I think what would happen to him and somehow I keep going.
Well that's my rant , I know I'm not alone, g
God bless you all.