PSP Smashes My 5×5 Communication Tool

Two days ago, in a move that was both bold and perhaps very PSP, I launched my hastily conceived and completely untested 5×5 communication method.

PSP promptly smashed it.

It took less than 48 hours and four real-world incidents to dismantle version one.

The first came on Yom Kippur morning.

I was extremely slow, rigid and barely able to speak. It seemed like the perfect opportunity to test the system. Except I did not actually want anything.

I was safe. I was not falling. I was not in distress. I needed no food, medication or intervention. I simply needed time.

My live-in carer was getting ready to take me to synagogue and asked what I wanted. Somehow, I managed to communicate that I needed to go back to bed: a flick of the head in the direction of my bedroom. No 5×5 sequence could have conveyed that more simply.

I slept.

When I woke up, I prayed by myself. During the prayers, I powered down again.

My live-in carer was sitting nearby, but I was facing away. What was happening could easily have appeared to be nothing more than a subtle change. I was unable to communicate, but I remained fully aware, calm and capable of waiting for it to pass.

The key point is that I have largely taken walking out of the equation. Because of my balance problems, previous falls and inability to use a walker safely, I was sitting comfortably in my wheelchair. There was no immediate danger.

The problem was not that I could not request help. I did not need help. What the system lacked was a simple way to explain what was happening:

Something isn’t normal. But I’m okay. I don’t need anything. Please just let me be.

Then came another lesson.

This morning, having forgotten my anti-reflux gel before bed, I woke up with vomit in my mouth, choking. I will spare you the unpleasant details. It was frightening, not least because some of the liquid could have entered my airway and caused an infection. This was not, however, the first time it had happened to me.

There was no time for a bang, a tap, a blink or a coded 5×5 exchange. I sat bolt upright and coughed instinctively. My wife calmed me down, helped me and insisted that I stay upright.

Experience and common sense took over. The 5×5 tool was completely irrelevant.

And then came the moment that finished off version one.

My live-in carer was discussing the communication tool with me and said, in words to this effect:

“There is no way I am giving you coffee, a smoothie, food or a chessboard when you are in that state.”

I laughed. A few seconds later, I realised he was absolutely right.

Even if I had successfully communicated one of those requests, a sensible carer would still have needed to decide whether acting on it was appropriate.

Reflecting on these episodes, I realised something that aligns with the research on communication in PSP. Alternative communication tools can be enormously valuable, but different situations require different approaches. A system that works well in one circumstance may be useless in another.

A communication grid cannot simultaneously be:

• an emergency response system;

• a temporary shutdown notification;

• a routine request tool; and

• a method for ordering coffee.

At least, mine cannot.

So, I have decided to take my 5×5 page offline, at least for now. That does not mean the idea is worthless. It means reality has started testing it.

And reality, unfortunately, works for PSP.

For now, it is back to the drawing board.

My more immediate priorities are simpler: exercise regularly, take my medication on time, follow my schedule, remember my reflux gel, avoid lying down after eating and preserve my remaining advantages for as long as possible.

A few days ago, I was on a high. Now I am dropping back into the harsh realities of PSP: the choking, the eyes, the slowness and the rigidity.

The brief holiday is over. It is back to term time. PSP has reminded me of a few of its tricks, and once again I must adjust.

PSP won round one. But I am far from done.