Someone asked what my days are like, what do I do, what helps and what not.
So I thought I would put my thoughts down, knowing that these might be absolutely useless or immaterial to others.
Things I like:
My cat Tootsie (Princess) She is a rescue cat (who Kevin says is a lovely motley moggie). She is fearful of people. When my light goes out at night she jumps up and lies on me purring to settle me down. When Kevin get's my morning coffee in bed she follows him in and jumps up again purring good morning. Yesterday I had a siesta and she gave up her afternoon nap to lie out on top of me... I think she knows I am not well and she is mothering me. She is a constant companion in this world where PSP increasingly shuts me out. Her grumpiness and stubbornness is amusing too.
Oh, and my husband who's typing (He put that in ) - We are very close and we spend more time together these days, while we can, doing things like writing this, or sitting in the garden where he planted a big flower bed with the plants I chose. I love the flowers.
I like good food. Fortunately Kevin loves cooking new and different things so that's good.
Cuddles with Kevin. Cuddles are always nice, but with PSP the world seems distant and it can get lonely inside and cuddles are close and connecting for me.
I love meeting with my nieces who are 18 and 19. Though I get stuck about what to say to them, words don't come and conversations move too quickly for me, we are close and I love to hear their news. It's time away from my struggle, time to see good things happening.
Laughing. I love comedy shows and Kevin knows just how to make me laugh too. We laugh quite a bit... more time away from sitting and waiting and sitting in my PSP world.
Having my Will, DNR, Funeral and LPA's all done and dusted is a big weight off my mind. I feel safer with the LPAs' too.
Reading this forum and learning about what is to come and seeing so many good examples of how people can, and do cope and how they struggle through. Its' do-able... We can do this.
We tried CQ 10 in largish doses and could not discern a slow down. We stopped it after a year and we don't discern an increase in deterioration either.
We tried Methylene Blue as well... I had blue lips and Kevin blue hands... We gave up on that after a little while... at least with that one the consultant didn't throw it out of court (like CQ10 "there is no convincing evidence that it helps"), but muttered that there may be something in it. No change before or after stopping.
Now I'm taking Turmeric, not for the PSP but because it is a powerful antioxidant and anti-inflamatory... Kevin thinks I am brighter since taking it.
I use an exercise bike daily and go to hydrotherapy weekly and have a deep tissue massage at home once a week. The hydrotherapy and massage gives me such a sense of well being and makes me soo relaxed. The daily exercise bike stops the leg twitching, which was mild, and the Physio (monthly) commented on my improved mobility when I saw her.
Sometimes Kevin could not cope with my behaviour, or having to repeatedly say the same things many times a day day in and day out. He would then become angry or upset. Then I would be upset. We had a year with a lot of this. Both struggling and being in tears at times. Somehow we have got past that now. Writing these posts has helped. It has made us talk about the hard things from both sides and given us a more mutual understanding.
Well that's some of my world as it is for now.
Warmly with thanks to all here for the help on this journey.