When Mum was diagnosed with PSP we were told that it was very rare and nothing was known about it.
I read as much as i could find - then had to stop as i was so scared.
Now I read the blogs with sadness and relief - it is so comforting to know i am not the only one in the country with a family member who suffers from this awful disease.
When Mum moved into a care home i was devastated, but knew we could not look after her without moving house and she didn't want me as an only child to have all the responsibility. The carers are wonderful but i so worry about how this is all going to pan out!
Moving counties meant a new consultant, he was very blunt - "nothing we can do for you!" and was very dismissive. There is one Parkinson's Nurse to cover a very large area (she is great but so over stretched).
Mum has been promised OT support to get special cushioning to support her in the chair -(she is always falling to her left in a chair and her head hangs the same way - she is so uncomfortable but no amount of cushions seem to help) this has not happened we have been waiting for 5 months now!!!!
Botox has been mentioned for the stiffness in her neck and shoulders -again we have been waiting for 5 months! I suspect it is too late to help her now.
Luckily Mum still has good understanding and will do as she is told by the carers, but keeps challenging them as to when she will be allowed to move around on her own! Sadly she tells me (with extreme difficulty and a litewriter) she feels she can do anything when lying in bed but hates it when she tries to move and can't.
Just really wanted to say i feel less lonely knowing you are all out there and to send love to all carers and sufferers. Together we will get through this!