I just thought I would say something about my experience of having PSP.
I now have difficulty typing and finding the words I want. So my lovely husband Kevin is putting my thoughts down for me. (He said lovely I didn't!)
I can no longer walk without someone steadying me and then I merely shuffle.
Even when I am sitting still I feel like the room is moving.
When I am sitting I feel like I could just stand up and walk and I have to remind myself that I can't. That makes me feel sad and useless.
Mentally I feel like I am slow and looking out through a veil.
I have a really nice carer from the agency who helps me bathe and dress, that feels so humiliating, particularly as I try and support myself whilst she takes my trousers and knickers down.
When I come down the stairs on my chair lift I put the seat belt on to stop me throwing myself off the chair just to be difficult. In general I feel like doing the opposite of what I am being told, because I want to assert myself and be independent.
I hate PSP for the way it makes me feel: Angry, useless, trapped and dependant.
I feel that I am really good in groups where I get patronised by volunteers, because I can put up with it and I can ignore a lot of the rubbish being talked by them, "How are we today then?... that's lovely, well done..." All said like I am a child.
I love my husband very deeply and I have wonderful loving nieces and sisters, but I want to get this PSP thing over. I don't want to be alive and suffering and it just get's worse.
I feel good that I have an end of life care plan, have done my will, and have paid for my funeral. I feel especially good about the Do Not Resuscitate form and the LPA pinned to the wall in an envelope by the front door where an ambulance crew would find it in an emergency.
I am not depressed and I enjoy warmth and hugs from my husband, friends and family. I watch comedy shows and laugh until I drop (Kevin says that that is an unfortunate phrase LOL - I'm keeping it in). I just don't want to wait years for my time to come with this broken life.
This forum gives me so much. The information has prepared me and the warmth and support going on here is wonderful.
Thanks for being here all.