Discovered this site 2 days ago, wow! its fantastic. I have been on it for hours! My head is spinning with information most of which is totally new to me.
My farther was diagnosed with PSP about 6 weeks ago. Before this I had never heard of PSP so I am still learning how it will effect him. I have so many questions. Up in till 2 days ago I didn't know where to find the answers. Thanks to everyone who has been sharing their knowledge.
I would love to share with everyone, in the view of getting help, exactly what stage we are at and where to go from here... So we now know it's PSP my father has. We had been going to his local GP for a year worried about him falling over all the time. First of all it was just put down to old age (he is 65) then about 8 weeks ago we were told it could be parkinsonism. We then took him privately to Queen Square, London to see Professor Niall Quinn, who told us he had PSP. He said that there wasn't any medication for it and so suggested we went back on the NHS to see a neurologist. He wrote to our GP asking if we could be put in touch with Professor Huw Morris. 6 weeks later and we haven't heard a squeak. I phoned the GP who said that it could take up to 6 months to get an appointment through and that the appointment could be up to a years wait.
I cant sit around watching my father going downhill,l waiting for the appointment to find out where we go from here....
Please, does anyone have any advice? What should I be doing for him? I want to do all I can whilst I can. At the moment my farther is willing to give anything a try.
His symptoms are; poor speech, occasional chocking, poor balance, emotional, anxious, sagging eyelids, eyes clamping shut in evenings, breathless (may be due to anxiety) emotionless face, stiff neck.
I have been looking into the Lee Silverman voice treatment but this is as far as I have got. Would be glad if anyone has any advice on the LSVT program.
I hope this all makes sense. Thanks again for everyone's previous posts, really appreciated.