The PSP Obstacle Course

My awesome physios, who will remain anonymous, probably knew I was going to write about this today, and I couldn’t resist in the end because I think it shows an insight into where I am holding with PSP. It’s actually very amusing, quite positive, and yet ultimately tragic.

Imagine the scene: two physios (one gratefully helping my usual physio) because I’m at too much risk of falling, helping me walk around the room. They’re holding my upper arms/shoulders while I attempt an obstacle course.

Many have seen programs like Ninja Warrior or, when I was young in the UK, The Krypton Factor. It was just like that… sadly I am joking, it was not. In an attempt to keep practicing my balance and limited ability to walk (the last part of a regular 45-minute session), they held me on either side while I, with a cane for support, managed 1.5 rounds of walking over two gym cushions, placing first my right foot and then my left foot in two separate quadrants of a square, then climbing the first of two single steps, crossing a deep blue mat (yes, the water obstacle with no water), and finally the last of two single steps.

I did the first round brilliantly but stopped halfway through the second round as I sort of ran out of juice – not a freeze so much as feeling I had gone into standby mode. Some deep breathing, and we pushed on to complete the lap… and I was exhausted.

It was really hard work, and emotionally I felt great as I pushed myself. Then I reflected — WHAT? Am I a 2-year-old? Until a year ago (actually less than that — until February), I was boxing, working out in a gym, running 5K, flying back and forth regularly to the US…

That I completed, effectively, the sum total of fully assisted walking (not sliding) less than six meters in about as many minutes, being held by two qualified physios, is insane.

I got back into my electric wheelchair for the 200-meter ride home — which I can’t manage with a walker — and felt a very wide range of emotions. Happiness, a brief sunbeam that I’d done much more than I thought I could do. Sadness that this is what I now call an achievement. Thanks that I still can fully think things through. Relief it was over. And fear about how fast this is moving and what comes next.

At home, I have more mobility with the walker because we have ceramic floors, and I sort of slide around with it without raising my feet from the floor – because much of the day I just can’t, depending on how tired my body feels. (Not sure this is the safest mode of transport so please don’t replicate).

So here is the rub, how have I processed this? Two ways.

Humor: we had a good amount of black humor in the session because I try to see the amusing side and will keep on doing so.

Measure against now: not think of the future or remember the past.

How hard is this? Put it this way, I think anyone can see how it is possible to view this completely from the cup-half-empty perspective, and all associated with that, including depression, sadness, frustration and giving up. I won’t!

I choose – genuinely – not to. Although the feelings are there somewhere.

This is the life of a fast-acting degenerative disease. I am extremely grateful that yesterday didn’t include a fall, choking attack, or other disaster. I had a good day – seeing friends from the UK who were in town, losing at chess twice to my mate (but I enjoyed it), losing my daily one-on-one NYT Connections contest, writing three articles, spending time with family, and watching (and falling asleep to) some Netflix with my dog. I even did an hour of ‘work work’ -two calls and a little help for my old firm with previous clients, which went well.

It was a good day – but it was a good PSP day, which, as with any progressive terminal condition, you have to treat as a win if you’re going to keep up the mental and physical fight and avoid any clangers such as a fall.

In this bizarre world, I choose to define ‘achievement’ on my own terms, celebrating small victories and being extremely thankful that my cognition remains, allowing me to write about it.

The fight continues.