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Not by the fact that PSP is progressive. I knew that. Not by the fact that my physical abilities would decline. I’ve been preparing for that for years. And certainly not by the fact that life would have its ups and downs. I’ve had plenty of those.
What surprises me is just how unpredictable the journey is.
I expected a gradual progression, with good periods and bad periods along the way. I knew there would be pain, frustration, and difficult decisions. I wasn’t expecting an easy ride. But I did expect some degree of predictability. Instead, I’ve found myself on a rollercoaster I never expected to ride.
And it seems I’m not the only one who’s surprised.
Please Stop the Ups and Downs. It’s Madness!
Recently, someone commented on my writing. I’m paraphrasing slightly, but the message was something like this:
“Your days are so up and down. One minute we’re reading something positive, the next something worrying. Why don’t you wait and write a daily summary, or even a weekly one?”
Others have said similar things, and I suspect many more have thought it.
I understand. One day I’m struggling to speak, move, or keep my eyes open. A few hours later, I’m writing about something funny, celebrating a small success, or feeling optimistic about the future. It must be confusing to follow.
But here’s the thing. I’m as surprised by these ups and downs as the people reading about them.
And while I understand the suggestion, I disagree with it completely. Because the ups and downs are precisely the point.
The Retirement I Imagined
Before PSP, life was often hectic and unpredictable. Career pressures, family responsibilities, successes, disappointments, and unexpected challenges all came and went. But beneath it all was a level of stability I barely noticed.
I could book a holiday six months ahead with a 99% expectation that it would happen. We could arrange a weekend away without giving it much thought. On a Tuesday, I could make a reasonable guess about how I’d feel on Thursday.
When I imagined retirement, I assumed that stability would largely remain. I knew PSP would gradually change things, and I expected periods of pain, difficulty, and calm. I wasn’t naive about what lay ahead. But I imagined life becoming quieter, slower, and perhaps even a little boring, with a relatively steady progression towards its inevitable endpoint.
I couldn’t have been more wrong about that.
Today, a weekend away involves educated guesswork. Six months might as well be six years. And predicting how I’ll feel in two days’ time is often impossible.
I can go from almost completely helpless to energised, productive, and optimistic. From frightened to hopeful. From wondering what I’ll lose next to celebrating what I can still do. And then back again.
I expected my world to become smaller and quieter. In many ways, it has become smaller, but it certainly hasn’t become quieter.
The Reality Between Appointments
Every few months, I see my neurologist. We discuss symptoms, medication, progression, and future decisions. Those conversations matter, but they are snapshots.
Research papers tell us what PSP looks like over years. Clinical appointments provide a picture over months. A monthly, weekly, or daily summary progressively narrows that window, but even a daily update can miss what happens within a few hours.
My speech changes. My energy changes. My mobility changes. My mood changes. Sometimes there is an obvious explanation. Sometimes there isn’t.
If I waited until the end of the week to write a neat summary, what would I actually say?
“Monday was terrible. Tuesday was good. Wednesday was mixed. Thursday was dreadful. Friday was surprisingly positive.”
Accurate, perhaps. But it misses the point. The fear on Monday was real. The happiness on Tuesday was real. Neither cancels out the other.
A good afternoon does not invalidate a terrible morning. Nor does a terrible morning prevent a wonderful afternoon.
That’s what I want people to understand.
Right Now, I’m Happy
It’s nearly four in the morning as I dictate this. I’ve just spent the best part of two hours working on my new book.
The manuscript has already reached 13,500 words. Much of it will need to be revised, restructured, and rewritten, but that’s part of the process. What matters is that, for the first time in a long time, I have a substantial project again. Something to build, something to shape, something that has absolutely nothing to do with PSP.
For much of my life, I led projects, solved problems, and advised organisations facing difficult challenges. It is tremendously satisfying to have somewhere meaningful to direct my energy again. And there’s a long way to go. This won’t be finished by the end of the week. It may take months, and I’m rather pleased about that.
My mind has somewhere to go. I feel productive. I feel purposeful. And right now, at this very moment, I’m happy.
Not pretending to be happy. Not searching desperately for something positive. Actually happy.
Please don’t dilute that happiness by averaging it with the difficult hours that came before it. It deserves to stand on its own.
And What Happens When I Wake Up?
I’ve probably pushed myself too hard tonight. My speech is already becoming quieter, and I can feel the effects of the effort. In a few minutes, I’ll try to get some more sleep.
How will I feel when I wake up? I haven’t the faintest idea.
I may wake up feeling strong enough to continue writing, enjoy time with my family, and make the most of the day. Or I may wake up struggling to open my eyes, struggling to move, and struggling to speak.
I simply don’t know. That’s not pessimism. It’s experience.
Yet uncertainty works both ways. Just as a good morning can become a difficult afternoon, a difficult morning can become a surprisingly good evening. And despite everything PSP has taught me, that still catches me by surprise.
Progressive Is Not a Straight Line
The clue is in the name: Progressive Supranuclear Palsy.
It is progressive. Over time, the overall direction is towards greater disability and loss of function. I cannot pretend otherwise. But progressive does not mean every hour is worse than the hour before.
The long-term trajectory and the day-to-day experience are very different things. Many serious illnesses fluctuate. The difference with PSP, at least in my experience, is the speed, intensity, and consequences of those fluctuations. The gap between feeling capable and feeling completely helpless can be remarkably small.
That’s worth documenting. Not because every difficult hour represents a major medical development, or every positive hour means the disease has somehow retreated, but because this is what living with PSP actually looks like.
Messy, unpredictable, sometimes frightening, sometimes funny, and occasionally wonderful.
A weekly summary would be easier to follow. It would also be less true to the experience.
Why I Write When I Write
I write about my experiences when they happen because I want to capture what I actually feel, not what I remember feeling several days later. Memory smooths the edges. Fear becomes less frightening once it has passed. Joy becomes less vivid once it is buried beneath later frustrations.
Writing in the moment preserves something important.
That doesn’t mean I share everything. Some experiences belong to my family rather than the internet, and those boundaries matter enormously. But within those boundaries, I try to be honest.
I’m not writing a clinical diary or producing a scientific paper. I’m simply sharing one person’s experience of living with PSP. Perhaps another patient recognises something familiar. Perhaps a family member better understands why yesterday’s abilities cannot be assumed tomorrow. Perhaps a clinician gains a small insight into life between appointments.
Or perhaps someone simply realises that a person can be frightened, frustrated, grateful, productive, and happy, sometimes within the same few hours.
Still Surprised
I appreciate the concern behind the suggestion that I post less frequently. I know these rapid changes can be confusing, worrying, and sometimes emotionally exhausting to follow. Imagine what they’re like to live through.
But I don’t want to tidy up PSP to make it easier to read about. And I certainly don’t want to wait until the end of the week to decide whether today was good or bad.
Today can be both.
Right now, I’ve written 13,500 words of a book I never expected to write. I’ve spent two productive hours doing something I genuinely enjoy. I feel engaged, purposeful, and happy.
In a few hours, I may feel very different. If I do, I may write about that too.
When I was diagnosed with a progressive neurological disease, I expected many unpleasant surprises. What I didn’t expect was to be surprised quite so often.
Some surprises are frightening. Some are frustrating. A few are wonderful.
And at four o’clock this morning, 13,500 words into a book I never expected to write, I’m grateful that life is still capable of delivering all three.
