Gradual and Sudden

I’ve come to realise, if I didn’t already know, that this disease moves in two ways, both horrible: sudden lurches, like a major choking incident or a fall, and a relentless, creeping progression that feels truly insidious. I’ve written before about a lava flow, and that metaphor feels right again this morning.

Over the past few weeks, I’ve noticed I’m simply slower, stiffer, more exhausted. I am really struggling to see what I am writing now. It’s lucky I’m a very fluent touch-typer. At this very moment, my hands are working ok (I bought a better mouse and board during the week which makes it easier) but at other times, I rely on my voice to dictate. Between the two, I manage. Looking at the screen, there is so much blur, and my sensitivity to light seems to grow worse. I wear an eye mask for increasingly long parts of the day.

Everyday tasks are harder: moving in bed, getting up, getting dressed, walking. Increasingly, I need the wheelchair indoors rather than the walker because I don’t feel stable enough. As this happens, my range narrows. I haven’t been upstairs for three or four weeks. I wouldn’t even dream of trying it now, whereas a few weeks ago I could do it with care. I’m home more, and in the chair more. Of course, it’s a vicious circle: the less I move, the weaker my muscles become. I resist this as much as I can, but it’s hard.

With PSP, I am battling on multiple fronts: preventing the sudden crises mainly by staying on such a careful diet to prevent the need to go on a feeding tube which the doctor wants me to do, while the gradual decline moves at a fast pace. I am also trying to keep my cognition strong and my mental attitude positive.

One little example is actually quite funny – as I don’t chew any more because all my food has little texture, my physio has recommended buying the toys that babies use to exercise my chewing muscles because they are simply so stiff. I haven’t been yet but without going into details I guess there is increasingly more I can and will soon need to buy from similar stores. The Circle of Life comes to mind.

It’s so hard. With the walls closing in, staying upbeat is a huge effort, but I remain broadly positive and I laugh and generally the days are full of relative good or at least peace. Without treatment options, I just keep adapting and persevering. I have no idea if I’m handling this in the best way possible, but I think I am doing okay.

I do now fear, however, that I am heading towards a cliff where I’ll soon need genuine full-time invasive care for the things that scare me most: losing dignity and independence. Not just because of falls or choking, but because I may soon not be able to manage basic tasks. I’ll resist for as long as I can, because I’m stubborn and because I’m afraid, but at some point, I’ll have to yield. There is one form left I need to take to the nurse to finalise for the process of getting a carer, and this week I hesitated. I need to get it done. I know that even if we don’t invoke it immediately.

I’d love to end the week on an upbeat note and I will, but sometimes it just has to be said: this struggle is brutal, and it’s not one I can win in the conventional sense. There is no treatment. It will almost certainly (miracles excluded) consume me eventually. It’s only a question of how long and in what way.

As a person of faith, I accept this as my path and as I write often I am oddly calm, satisfied and grateful with life. I’ll keep going, keep writing, and most importantly, spend as much quality time as I can with the people I love—doing, seeing, laughing, participating. My respect for families, the patients, caregivers, and loved ones walking this same road is immense. It’s a nasty road, and the way couples endure it quietly, without treatment options or understanding, is remarkable. You all give me strength.

On the positive side, I have three things to add.

I’m hugely grateful that my cognition remains, and that for now I can write and have this outlet. When that goes, I’ll try to stay positive.

Secondly, I got a compliment of my new book on PSP from a couple of people which truly lifted me – thanks!! I hope the book serves a purpose at least to some.

And maybe because I needed some sense of control last night, I ordered half a kilo of vanilla ice cream at 10pm. My wife and kids thought it was mad, but that’s exactly why I did it. It was delicious and utterly ridiculous, but it gave me pure joy. So much so that after my yoga and exercise, next on my list, I might have some more. I need to be careful—this lack of activity isn’t forgiving—but a treat or two, or three, never did anyone too much harm. Says the ice cream addict.