The Day I Felt PSP Shift Gears: Fearing Cognitive Decline and Growing Isolation

I’ll start with something funny, because this became one of the hardest days I have had with Progressive Supranuclear Palsy (PSP).

My daughter was revising for a test and asked if she could read her notes to me. Her exact words: “You are at least better than my wall.”

So there we have it. I was cognitively stronger than a wall. But after several irrelevant questions from me, she went back to the wall.

Today was hard, but not because of anything dramatic. I didn’t fall or choke, although I did power down twice. It was hard because I confronted something I had been hoping, perhaps foolishly, was not happening.

I am starting to lose some of my cognitive abilities. I can feel it, even when others cannot see it.

At the same time, I am feeling more and more alone. I discussed it with a close friend today. The two are connected, even if I struggle to explain how.

The man who used to think quickly

Today I went to a hospital in central Tel Aviv. It was my first time in about eighteen months back in the city where I used to work. Since retiring, I have lived in a small village, with occasional visits to a much quieter hospital.

I was born in London, have visited New York more than 50 times and spent years working in Tel Aviv. Yet today, Tel Aviv overwhelmed me. The noise, traffic, lights, volume of people in the hospital and constant movement were almost too much.

The appointment was very useful and may lead to something very positive. More on that if there is something to report.

But I also underwent cognitive testing. Three, four and five years ago, I took similar tests and scored comfortably above the benchmarks. I don’t say that to boast. I was a partner heading the consulting practice of a Big Four firm in Israel, and thinking quickly and making complex decisions was my job.

Today, the person testing me thought I had done reasonably well. He saw no obvious major impairment.

But he did not know the man sitting in front of him five years ago.

I did. And I knew the difference.

My thinking was slower. My recall was weaker. Sentences that once formed automatically now take time to assemble. Sometimes the thinking itself is slower. At other times, the thought is perfectly clear, but getting the words out loudly enough to be heard is another struggle.

Doing well against the average is not the same as doing well against the person you used to be. By conventional standards, I may be fine. By mine, I am not. And that is a loss.

Three small examples that felt enormous

I struggled to name medications I take every day, even with the list in front of me. Asked to name words beginning with a given letter, I passed, but slowly, searching and pausing where the words once came as fast as I could speak.

The third example wasn’t a test at all. We needed to decide where to put a chair to give me another safe place to sit. I went backwards and forwards, reconsidering options I had already rejected.

I used to make complicated decisions for a living. Today, deciding where to put a chair felt complicated.

That is a sentence I never imagined writing.

None of this alone proves decline. Fatigue, medication and the overload of Tel Aviv all matter. But something can be profoundly real to the person experiencing it long before it is obvious to anyone else. And it really frightened me.

I should add that the tester was exceptionally kind. He spoke to me in my native language and even came out to the car park to help my sister, my carer and me find our way. Kindness matters, especially on days like this.

When friends don’t know what to say

Close friends visited this afternoon, when I was far from my best. One of them made a fair point: when someone writes something this painful, what can you say? We joked that I should write something cheerful to get more responses. Neither of us believed that was the answer.

I don’t want to be told everything will be fine. It won’t be, not in the conventional sense. But I desperately don’t want to feel alone.

Perhaps that is why the cognitive changes frighten me so much. As thinking, speaking and communicating become harder, I worry not only about what I am losing, but about how much harder it may become to stay connected to people.

That is the contradiction. I want contact, but too much overwhelms me. I want visitors, but too many exhaust me. I want conversation, but emotionally demanding conversations can trigger the powering-down episodes that frighten me. I want to hear from people, but I may not have the energy to reply.

How do you explain what you need from others when you don’t know yourself?

I am trying

I want people to understand this: I am trying as hard as I possibly can.

I am trying to stay positive without denying reality, and to hold on to what independence I have left. I am trying to exercise, pray, keep my mind active, spend time with family, maintain friendships and keep writing.

But PSP is invading my body, my mind and my emotions. Sometimes I adapt. Sometimes I laugh. Sometimes I find something wonderful in the middle of it all. And sometimes, like today, I am completely overwhelmed.

I cannot promise that I will always be positive, or that I will reply to messages or welcome visits in the way people expect. I can only promise that I am doing the best I humanly can.

No neat lesson today

I usually try to end with a lesson, some perspective or a little humour. Today I don’t have one.

I don’t know how to stop feeling lonely without becoming overwhelmed, or how to reconcile who I was with who I am becoming. Maybe some days are simply too hard to wrap up neatly.

I am still here. I am still fighting for my family, my faith, my purpose and my dignity, and still looking for something to smile about.

But today I am also frightened, exhausted and lonely. I wish I could tell you otherwise.

I don’t need anyone to tell me it will be all right.

I just need to know that, as things get harder, I am not disappearing from people’s lives as well.