His low moods, generally apathy and quite often his refusal to accept his limitations in the face of PSP ( this last one at least I cannot deny him). After several calls to, the
Specialist nurse at the hospital, social worker, the GP and Uncle Tom Cobbley and all, we had a call from something called The Memory Clinic in our local borough informing us that our GP had requested that a visit be made to assess my husband's mental state. Incidentally no one from our GP's practise thought to tell us that they had done this.
A very pleasant lady arrived on the appointed day, asked lots of questions from a tick list - she, in common with most professionals, health or otherwise, had little or no knowledge of PSP, but nevertheless, the visit went very well. She went away with the promise that she would report back to her colleagues, they would have a team meeting and she would be back to tell us what they were going to do for us. Harry subsequently had a blood and urine test to see if he would be able to tolerate any drugs that they suggest.
Today the very pleasant lady came for further visit, another series of questions from a tick list, a very comprehensive summary of the first meeting was left with us , another series of options were made to "get him out of it and improve his mood" the Day Centre etc , all suggestions made by other agencies and declined in the past
During the course of today's visit she said that one of her biggest problems was getting any detailed information about Harry's condition from the GP. I told her that my biggest problem was that during the whole of the past three years, each time we met a member of the "professions" the same series of questions were asked, the same answers were given, no one knew the other person existed, no one knew who had said what to whom and in short, IN THE AGE OF THE BIGGEST TECHNOLOGICAL REVOLUTION OF THE CENTURY THERE WAS NO JOINED UP WRITING.
Later on I read about another blunder regarding the latest computer cock-up within the NHS which was going to cost us billions - certain that it would go a long way to perhaps find a cure, not necessarily for PSP but maybe for some other conditions - and I suddenly thought, that's it, enough is enough, no more questions, no more tick lists, no more being polite to the "professionals" , no more complicity in helping them justify their jobs (with one or two exceptions admitted) from now on We are going to listen to exactly what the neurologist who originally made the diagnosis said, "You have PSP, the NHS can do nothing for you, go home , get all the practical help you can and manage the situation as best you can".
So, with the enormous help and care that we get from our carers, mainly paid for by the Direct Payments, thank you to our very supportive social worker, with the support and love of our family, through our own considerable initiative, from the OT service and from this very informative and caring site, THAT'S EXACTLY WHAT WE'RE GOING TO DO.
Goodbye and if you have been, thanks for listening.