I have just answered a question on the site about initial symptoms and it made me think of making a post.. I've been intending to for ages. I thought I'd explain my situation with all the problems to see if anyone else has anything similar or any offers of advice. This is a very short synopsis of the last 4 years.
Initially my husband started with problems in 2008. In 2009 he had vision issues and the opthalmologist said it wasn't the eyes; it was the brain. The neurologist said that it was concentration and attention, then depression, then a chemical imbalance in the brain. We had 2 clear MRI scans. We saw different doctors and consultants. Finally the memory specialist sent us for a spect scan and that showed problems with the back lobe (vision) and the front lobe ( memory, understanding, appropriate behaviour, emotions, following instructions etc). He thought it was frontal temporal dementia. Finally 2 years later in December 2010 it was diagnosed at Hope hospital as PSP with an overlap of CBD.
He was registered severely sight impaired in February 2011. This is the worst part for him as he is unable to see to do most things. He has a little tunnel vision which varies from day to day. He can't be left and I have been a carer 24/7 for the last 2 years. This frustrates him and he gets angry at times.
On top of everything he has an enlarged prostate which causes a lot of bladder problems.
Over the last year his falling backwards has got worse. He struggles to get up even when helped which is difficult. He doesn't seem able to put his feet flat on the floor. Also he can’t process information or follow instructions. It seems at times he is being awkward and refusing to do things. I know it’s the illness but it’s hard. His handwriting has got smaller and is illegible. Sometimes he is very quiet when speaking so it’s difficult to hear. He doesn’t use his left side as much. He has an occasional shake in his hand.
The worst part for me now is the anger which sometimes results in his hitting out and grabbing me tightly. He hurts me at times. He gets very frustrated. He can't stand it if I don't do what he wants immediately. I try to stay calm but it is difficult as sometimes I shout and then he lashes out. My daughter has come to live at home but is struggling to cope, as I am. I am on anti depressants. He has occasional respite in a nursing home. He originally had respite in a hospice but they couldn’t cope. I’m being pushed to look at full time care which I’m not ready for.
They're now saying he is atypical PSP with cortical blindness and frontal lobe problems. He is not at the moment following the normal route of PSP. I know every case is different. They say his case is unusual, which doesn’t help.
Kat Haines the PSP nurse has been brilliant- very helpful.
Sorry to have written so much.
Has anybody experienced anything similar or can offer any advice or help?