PSP – The Constant Calibration of Risk

Most people experience risk as background noise.

They assess danger constantly, of course, but usually unconsciously: crossing roads, climbing stairs, driving tired, standing on a chair to reach a shelf. Life depends on thousands of small calculations that happen automatically and invisibly.

Progressive Supranuclear Palsy changes that completely.

With PSP, risk moves from the background to the foreground. Every action becomes conscious. Every decision demands recalculation. And because the disease progresses faster than you can comfortably adapt to it, the calibration never stops.

What am I still capable of doing safely?
What has become dangerous?
What remains worth the danger anyway?

Those questions follow me everywhere: into the bathroom, the synagogue, the car, the exercise bike, even the dinner table.

The hardest part is not that the answers change. It is how quickly they change.

Life with PSP often feels like trying to hit a moving target while standing on unstable ground. Decisions cannot simply be made once. They have to be revisited repeatedly as the disease shifts the boundaries again and again.

Some decisions eventually become obvious, even if emotionally painful.

Stopping driving was one of them. I resisted longer than I should have. I loved driving and convinced myself I could compensate for increasingly obvious visual problems. Eventually, I accepted the reality that the risk was no longer mine alone to take. Looking back, I stopped later than I should have. I was lucky nothing happened before I did.

The same was true of renovating our home to create an accessible bedroom and bathroom downstairs. Practically, it was clearly necessary long before I emotionally accepted it. My wife saw that before I did and pushed the decision through despite my resistance. She was right – and, more importantly, right at exactly the right moment. We finished just in time.

That experience taught me something uncomfortable but important: sometimes the people walking beside us recognise the curve before we do.

But the hardest decisions are rarely the obvious ones.

How much independence in the bathroom is reasonable before dignity turns into danger?
How much walking is worth attempting when inactivity brings its own decline?
How much social engagement remains life-giving before noise, light, crowds, and exhaustion overwhelm the nervous system?
How much caution preserves life, and at what point does it begin shrinking it?

None of these questions has a permanent answer.

I still exercise significantly, but only with support nearby because balance can disappear without warning. I occasionally walk short distances with my physiotherapist and carer supporting me on both sides. I still attend important family events, but only with planning, safeguards, pacing, and exit strategies built in from the start.

Increasingly, most of life moves into what I think of as the yellow zone.

Throughout my career, I often thought about decisions in terms of red, yellow, and green. PSP has made that framework deeply personal.

Red means no. Driving is now firmly red.
Green means relatively safe and sustainable.
Yellow means possible, but only with mitigation: supervision, equipment, planning, controlled environments, backup options, and acceptance that things may still go wrong.

The difficult truth is that yellow eventually becomes the dominant colour of life.

One of the more painful realities of PSP is that the disease does not only affect movement. Over time, it can affect judgment itself. Impulsivity can increase. Insight can narrow. Risk perception can quietly shift without the person fully recognising it.

That may be one of the cruelest aspects of the illness: eventually, the brain evaluating the risk is itself affected by the disease being evaluated.

It is also why decision-making increasingly becomes collaborative rather than independent. I have already put legal frameworks in place for the day I can no longer make decisions safely for myself. I hope that day remains distant. But pretending it will never come would not be courage. It would simply be avoidance.

Some decisions remain deeply personal.

For now, I have chosen against a feeding tube despite medical recommendations. That choice may change in the future and perhaps eventually will. But currently, the quality-of-life cost feels too high for me personally. Eating still matters to me. The experience, the routine, the humanity of it still carries meaning even with diminished taste and smell.

I do not know whether I will eventually regret that decision. Honesty requires admitting that possibility too.

The deeper challenge with PSP is timing.

Move too early and you may surrender parts of life unnecessarily. Move too late and the consequences can become irreversible. There is rarely certainty – only ongoing recalibration.

Recently, I have even started reconsidering whether I withdrew too much from public life. My caution may have protected me physically, but perhaps at too high a social and spiritual cost. I am beginning to think again about synagogue attendance and selective social settings, this time with safeguards rather than avoidance.

That too is part of the calculation.

I have generally erred on the side of caution. My instinct is to preserve life for as long as possible, which is one reason I eventually accepted full-time wheelchair use. But illness teaches an uncomfortable truth: there comes a point where excessive caution stops protecting life and starts emptying it.

The goal is not to eliminate risk completely.

The goal is to continue building a life still worth the risks being taken.

Because with PSP, the calibration never ends.