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I started the day feeling great and was looking forward to a great day, but once I got on the yoga mat with my carer, it all started to unravel.
I think it was the sun. We were in the garden, and it caught my face. I had to stop exercising. I was simply rigid and frozen, with parts of me unable to move. At times, I couldn’t talk. I had issues with the bathroom and, in general, it was deeply unpleasant.
Then the behavioural side of PSP decided to come out to play.
Angry Ben took over.
And he made things really unpleasant.
Then, after his performance, the choking started. It was horrible and lasted quite a while.
I have now got some of my normality back, and I want to focus on three things:
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Physical deterioration and discomfort can create a spiral effect. They can trigger behavioural problems, which in turn make the physical situation worse.
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Things can simply spiral out of control, particularly when Angry Ben steps in.
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It is not nice for anyone. Everyone around PSP gets caught up in this beast. Nobody gets training in how to deal with my mixed messages: I want the people I love to carry on with their lives as normally as possible, while at the same time, I want and need full care and compassion.
We all need to find ways of calming things down before the spiral gathers momentum.
I may sometimes give the impression through my writing that I am living on some idyllic island of stability.
Sadly, Angry PSP Ben has moved in and disrupted it.
And it is only 11:58.
