PSP: Four Seasons in a Single Morning

Living with PSP can feel like experiencing four seasons in a single morning. The weather can change in a minute.

Between 4:00 this morning and 8:47, I could have written four completely different blogs. Each would have been entirely truthful. Yet each would have painted a very different picture of my life with Progressive Supranuclear Palsy (PSP).

The first would have been about freedom. Until PSP interrupted it.

I felt really good last night, possibly helped by watching my football team win. On the spur of the moment, my wife and I went out for a cool 9 p.m. walk, me in my electric wheelchair and her with the dog. It was lovely and unexpectedly freeing. A little risky, perhaps, but I loved it. I was already thinking about writing a blog about it.

But just as I was heading to my computer, I powered down in the kitchen. I simply couldn’t move. I was able to alert my wife and carer using the wheelchair horn, and because I was sitting rather than using my walker or cane, I knew I was safe from falling. After getting to my armchair, it took half an hour of rest and some massage of my right arm before I could move properly again.

Frightening, exhausting, and a reminder of just how little control I sometimes have over my body.

But I didn’t panic.

The second would have been about achievement.

I completed my detailed monthly financial analysis, including a complex spreadsheet and updates to the relevant details for the family. PSP may be taking more from my body, but my cognitive abilities remain remarkably intact. I can still analyse, calculate, think, and solve problems. Something for which I am enormously grateful.

The third would have been philosophical.

An email from someone whose loved one also has PSP, but experiences it very differently, made me reflect on the extraordinary variation within this disease. They face severe cognitive challenges while remaining physically active and able to walk. I have lost significant physical abilities while largely retaining my cognition.

Our experiences are very different, despite sharing the same diagnosis. I am enormously grateful for the cognitive abilities I retain.

The fourth would have been about relief.

After two or three miserable weeks of bowel problems, I finally seem to be emerging from the crisis, hopefully becoming less reliant on the extraordinary collection of medications and remedies I have needed.

Four blogs. Less than five hours. Four different versions of my life.

And that is the real story.

Of course, everyone’s life has its seasons. We all experience highs and lows, sometimes several times in a single day. I am not suggesting that mine is somehow unique.

What has changed with PSP is the speed and intensity of the swings. The contrast between feeling capable and feeling completely helpless seems to be growing. And the swings feel more extreme than they did even a few months ago.

Four seasons. Sometimes all four arrive before breakfast.

Even my wheelchair contains the same contradiction. I fell on Shabbat trying to get into it, but because I was already close to the ground, the consequences were limited. The wheelchair represents lost independence, but also freedom and protection.

Both are true.

Every blog I write is a snapshot, not a permanent description of my life.

When I write that I am frightened, I genuinely am. When I write that I am happy, I genuinely am. Neither feeling invalidates the other.

Over the coming weeks, I hope to see visitors, perhaps attend celebrations with some of my closest friends, and enjoy experiences that matter enormously to me. If you are one of those people, just keep this variability in mind and be OK with it.

Will I manage them? I have absolutely no idea.

It may depend on how I feel that morning, that hour, or even that particular minute.

I can plan. I can prepare. I can hope. But I cannot guarantee.

And perhaps that is what I am slowly learning: not to judge my entire life by the weather at any particular moment.

A terrible half-hour does not necessarily mean a terrible day. Equally, a wonderful morning guarantees nothing about the afternoon.

I cannot control the seasons of PSP. But I can try to make the most of whichever one I find myself in.

At 4:00 this morning, I could have written about helplessness.

By 8:47, I had four completely different stories.

And by the time you read this, the weather may have changed again.