The Toughest Project of Our Lives: 18 Months of Battling PSP Through Stop. Start. Continue. Change.

Last night I wrote that, eighteen months after my PSP diagnosis, my wife and I are in a better position than either of us expected to be at this stage.

I’ve thought a lot about that sentence since writing it, because it risks creating entirely the wrong impression. It could make the last eighteen months sound easier than they have actually been.

They have not been. There has been a significant decline in my physical condition. But compared with where we feared I might be eighteen months later, particularly cognitively, we are much more optimistic than we expected to be.

The truth is that the last eighteen months have involved the toughest project of my life and, quite possibly, the lives of those around me, by an absolute mile. That is not intended to sound dramatic. It is simply true.

Before PSP, I spent much of my adult life leading and advising on large, complex change programmes and M&A projects. Some involved hundreds of people, enormous uncertainty and the occasional requirement to make important decisions long before anyone had all the information they wanted.

My professional DNA was broadly the same throughout: try to stay two steps ahead, focus on what really matters, remain flexible and adapt quickly when circumstances change.

Looking back, I realise that exactly those instincts have shaped much of how we have responded to PSP.

Which leads me to the slightly depressing conclusion that once a consultant, always a consultant.

PSP is certainly not a project. If anything, it is the world’s worst client. It changes the scope without notice, ignores the timetable, provides absolutely no roadmap and appears to have very little respect for governance processes.

But adapting to PSP has required many of the same disciplines that major projects require: decision-making, teamwork, planning, preparation, prioritisation and, above all, adaptation.

There was never an eighteen-month master plan because there could not have been one. We had no idea how quickly things would change, which symptoms would become dominant or what challenges would emerge next.

There is also something very important I need to make clear.

When I say we are doing better than expected, I do not mean that I have somehow held my ground against PSP. I haven’t.

Over these eighteen months I have declined significantly. My mobility is dramatically worse than it was at diagnosis. My independence has reduced considerably. Many things I once took completely for granted have become difficult, dangerous or impossible.

PSP has continued doing exactly what a progressive neurological disease does.

This is not a story about preventing decline.

It is a story about managing decline.

The reality is not that I am where I was eighteen months ago. The reality is that, so far, the decline and its consequences have been less severe and less disruptive than my wife and I feared when we first heard the diagnosis.

That distinction matters enormously.

Very early on, I identified five things that I wanted PSP to take from me as slowly as possible:

Family. Faith. Purpose. Dignity. Positivity and joy.

Those became the goals. Everything else became tactics.

And when I look back at the hundreds of decisions we have made over these eighteen months, I realise that those goals have remained constant. Practically, I have unconsciously been using a very simple framework that I used for years in my professional life to help protect them:

Stop. Start. Continue. Change.

What surprises me now is not that the framework works. It is the sheer scale of change it reveals.

Stop

The scale of what we have stopped is difficult to comprehend.

I stopped driving. I stopped my career. I stopped walking independently. I stopped eating certain foods. I stopped doing countless things which, for most of my life, I would have regarded as completely normal.

Many of those decisions hurt. Some felt like losing parts of my identity. None felt like victories.

But PSP has taught me that there is a profound difference between risk and unnecessary risk.

I still believe in taking risks when something genuinely important lies on the other side. What I increasingly try to avoid are risks that serve no useful purpose and simply increase the chance of harm.

That has meant deliberately withdrawing from situations involving large crowds, excessive noise or difficult lighting. It has meant giving things up before I necessarily wanted to give them up.

But stopping some things has helped protect my ability to continue others.

That is the point.

Start

Many of the things we have started were things I hoped I would never need.

A live-in carer. Major home adaptations so that I could move downstairs. Wheelchairs. Specialist equipment. Communication tools. Continence products. Botox and a seemingly endless collection of solutions for my vision. Benefits applications. Legal work surrounding disability rights and end-of-life planning.

None of these appeared on a wish list. They arrived because reality required them.

Some of the decisions I resisted or feared most have turned out to be among the best decisions we made.

Continue

Continue may be the most important category of all because it asks a fundamentally different question.

Not simply, What have I lost?

But, What still matters enough to fight to keep?

Exercise continues. Physiotherapy continues. Medication continues. Learning continues. Writing continues. Friendships continue. Faith continues and, in many ways, grows. Family continues and grows. My goals continue. So do the positivity, determination, rapid decision-making and adaptability that have helped me throughout my life.

Most importantly, life continues.

Not in the same form as before. It couldn’t. But it continues nonetheless.

Attending my daughter’s wedding is one of the greatest examples of that. Leading prayers at the Jewish New Year, G-d willing, will be another.

These don’t happen automatically. They require planning, effort, help and sometimes courage. Occasionally they require a degree of stubbornness that my family might reasonably suggest I have always possessed in abundance.

But these things matter because they connect directly back to the goals: family, faith, purpose, dignity, positivity and joy.

If I remove every challenge from my life in the interests of safety, I may eventually become extremely successful at protecting myself from life itself.

Change

Change is probably the largest category of all because almost everything has changed.

How I move. How I communicate. How I exercise. How I eat. How I travel. How I socialise. How I manage symptoms. How I occupy my time and maintain purpose. How we respond when something new arrives, whether that means nerve pain, deteriorating vision, greater immobility or another challenge that was not on yesterday’s list.

Most significantly, perhaps, I have changed how I define independence. I once thought independence meant physically doing things for myself. Increasingly, I think independence means retaining as much control as possible over the decisions that shape my life, even when somebody else has to help me carry them out.

That has been a profound mental adjustment. One of many.

The Reality Behind the Last Eighteen Months

I do not want this article to make the last eighteen months sound like an interesting exercise in management frameworks. They have not been.

There has been fear. Real fear. There has been pain and grief. There have been ambulances. There have been moments of genuine terror as we have contemplated what PSP might mean for the future, not only for me but for the people I love.

My wife has carried burdens that very few people see. My family has adapted in ways they could never have expected, and I am immensely proud of them.

There have been difficult conversations, difficult decisions and some very difficult days indeed.

But that is not the whole story either.

There have also been wonderful moments. Joyful moments. Funny moments. Moments of enormous gratitude. Friends appearing at exactly the right time. Family gathering together. Laughter at situations which, before PSP, would have seemed completely absurd.

The disease is terrible.

Some of the experiences surrounding it are not.

Both things can be true at exactly the same time.

What I Have Learned

None of this means that managing PSP well determines how PSP progresses. It doesn’t. Disease progression is not a performance metric. Biology matters. Luck matters. Circumstances matter, and there are things over which none of us has meaningful control.

But neither have we been passive observers. Behind these eighteen months lie hundreds of decisions, constant adaptation and repeated changes of course. Through all of them, the goals have remained the same: Family. Faith. Purpose. Dignity. Positivity and joy.

Stop. Start. Continue. Change. Those are simply the tools.

And when PSP changes the circumstances again, as it inevitably will, we will adapt and make the next decision.

And then the one after that.