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I was going to write about something entirely different today (stay tuned), but I discovered something this morning that I think gives a pretty good understanding of one of the many aspects of living with PSP.
I woke up at 3:35 a.m., which is great for me. I had slept for 5 hours and 20 minutes, and I felt great.
I had an article for the Times of Israel about the coming Jewish holiday, which I threw my heart and soul into. I then drafted the blog I mentioned above, ran out of time, and went to synagogue. I was laughing and joking with my live-in carer.
The lights are very bright in the synagogue, and there was quite a lot of noise from chairs moving and other activity. It really seemed to affect me this morning. It was 7:45 a.m., or a few minutes before.
I simply found myself powering down and becoming rigid, stiff, uncommunicative, and stone-like.
I got a message to my carer, and he came and collected me. It was well before prayers finished—just 10 minutes in, in fact. I could hardly speak on the way home in the chair, and I went straight to bed.
I had a 30-minute nap and now feel recharged. I have just finished yoga and played a couple of games of chess with a friend, and will probably need to recharge again soon.
It is such a change for someone who used to go hour after hour working, and I think it is important to share.
I was not in pain or danger. Being in the chair meant the risk of falling was negligible. But it was not pleasant, and it is one of the reasons I like to stay close to home.
Unlike my new phone, I don’t have a percentage charge reader.
