I am more of a reader than poster on this page but thought I'd write this. I know people on here will understand my frustrations on his matter.
My husband is 54 and has been living with PSP for 6 years now. During that time he's had to stop working ,driving etc etc - you all know how that goes.
Yesterday he had his assessment for transfer from DLA to PIP. From the very moment I saw the form I have been stressed and upset. Having to sharply focus on all the bad / difficult / impossible things is very demoralising and them having to relay it all to a stranger was so upsetting.
We put a lot of effort into living day to day and focusing on what is good in our lives - I couldn't cope otherwise. I feel this experience will take a bit of time to get over.
The nurse who came to do the medical assessment was nice and appeared very sympathetic. She didn't do a physical examination as she said she could tell it would be difficult. Some of the questions were odd though and I'm suspicious of how the DWP will interpret them. 6 -8 weeks before we get a decision !!
I asked if she was aware of PSP, she said she hadn't but had done a bit of research I think. However asked some questions about when was his next MRI scan which made me think she maybe hadn't.
Anyway , it's done now. My husband spent his whole working life working in health and social care. He'd give anything to still be working, running, going to watch football - all the things he used to do. I just feel it's so unfair that we have to expose the very difficult life we have now just to get a bit of assistance.
I'm trying not to sound too bitter. Thanks very much for having this page. I know you'll all understand