I increasingly think of life with PSP as a world of countermeasures.

There is no cure and currently no treatment that stops or reverses PSP. Yet there are an extraordinary number of things that can reduce its impact, preserve something valuable or find another route around a problem.

I think of them in four broad categories: prevent, prolong, treat and cope.

Prevent something bad from happening. Prolong something I can still do. Treat a symptom where possible. Cope with what remains.

The arsenal, at least in my case, is significant.

Medication. Botox. Glasses and lenses. Physiotherapy. Exercise. Wheelchairs. Rails. An adapted bathroom. Safer food. Continence products. Therapy. Humour. Acceptance. Asking for help. Dictation. Voice control. AI. Writing. Thinking. Family. Friends. A live-in carer. Doctors. Faith. Purpose. Curiosity. Chess.

And, obviously, my morning espresso.

A countermeasure is not a cure. It does not remove the threat. It reduces its impact, preserves options and sometimes keeps something possible that might otherwise have stopped.

Increasingly, I see my life as two trajectories.

The first is PSP. Vision. Balance. Mobility. Speech. Swallowing. Sleep. Continence. The disease progresses and the challenges change.

The second is the countermeasures.

That second trajectory gives me hope because it changes too. I know more than I did a year ago. My family and doctors know more. Equipment improves. Technology advances. Better routines and new ideas emerge.

The important thing is to be broad, adaptive and flexible.

Some countermeasures prevent. Safer food may prevent choking. Rails may prevent falls.

Some prolong. Exercise may prolong strength. Dictation may prolong my ability to write. Technology may prolong independence.

Some treat. Medication may reduce symptoms. Botox may help my eyes.

And some help me cope. Therapy. Humour. Acceptance. Family. Faith. Purpose.

Many do more than one.

They also have to change because PSP changes. I moved from walking independently, to a cane, to a walker, to a wheelchair. Typing became harder, so I dictate. My eyesight changed, so the glasses changed. Swallowing changed, so the food changed.

And countermeasures certainly do not always work.

Last night they didn’t. I barely slept and, as I write this, have needed the bathroom seven times (despite 3 pills for this purpose).

Sometimes they fail. Sometimes they work brilliantly. Sometimes they help a little. Sometimes something works for months and then PSP changes the rules.

That is reality.

But I also see countermeasures working for other people. Through this blog, support groups and conversations with patients and families, I hear about communication tools, wheelchairs that expand rather than shrink someone’s world, adapted homes, accepting help and finding new purpose.

None of this cures PSP or removes the frustration and pain.

But it can change a life.

And I suspect there are hundreds of countermeasures I have never considered. I would genuinely love to hear from other patients and families: What are yours? What helps you prevent, prolong, treat or cope?

Perhaps that is why, despite advanced symptoms, I have been experiencing a remarkably positive run.

Not because PSP is improving. It isn’t. But PSP is only one trajectory. The countermeasures are evolving too.

I cannot control the first. But I can keep working on the second. There may be no cure for PSP.

But there is a world of countermeasures.

And that gives me hope.