Three Power Failures in One Day

I am physically slowing down and, to use the analogy of an electric car, my battery seems to be holding less and less charge before I lose power.

Today I lost power three times.

The first was at my sister’s house, sitting at the table in front of the whole family. It seemed like an eternity, but was probably only five to ten minutes. I was fully conscious and could hear everything, but it felt as though all my muscles had been switched off. I simply could not move.

Eventually, I recovered and, after we got home, I slept and felt better.

Later, I was playing chess with two friends when the same thing happened. This time, I recognised the warning signs. My right arm stiffened first, which is becoming something of an early-warning system. I managed to get to bed in my wheelchair before completely running out of power.

The third time was at prayers this evening. I simply stopped and dropped my phone as my arm hung in the air.

Three power failures. One day.

Thankfully, none resulted in an injury because I was seated and still.

Yesterday was similar. I had to leave synagogue halfway through the morning service because I felt it coming on. My live-in carer rushed me home, and we made it just in time.

The second episode came later at a friend’s house. We were having a lively and stimulating conversation when my arm suddenly stiffened. Sure enough, we left in a hurry, and by the time I got home, I was out of power again.

Five episodes in two days.

I have written a great deal about behavioural adaptation being more important than physical symptoms. I have not changed my mind. What I am learning, however, is that physical changes are by no means trivial. They are enormous.

I now need frequent naps, or at least significant periods of rest, to recharge.

But the problem is no longer simply how often I need to recharge. It is how little charge I seem able to hold in the first place.

It is definitely stepping up a gear. That worries me, and it worries those around me. I do not have an easy solution. I even had a very good night’s sleep, so I cannot simply put it down to exhaustion.

The episodes are not painful in themselves, although other aspects of PSP certainly are. What is so upsetting is being unable to move a muscle while sitting at a brunch table surrounded by family, including nephews and a niece who are much younger than me.

Fully conscious. Hearing everything. Unable to move.

I would love to end on an upbeat and positive note, but today I do not have one.

It happened.

I hope and pray that tomorrow brings more energy and fewer of these moments.

Please, G-d.