On the Fly: My PSP Decision Bank of Questions

Yesterday, one of my fellow PSP comrades-in-arms used a phrase that has stayed with me ever since.

He said that life with PSP is lived “on the fly.”

The more I thought about it, the more I realised that those three words may be the most accurate description of this disease that I have heard.

When people hear “Progressive Supranuclear Palsy,” they understandably think about symptoms. They think about balance, eyesight, speech, swallowing and wheelchairs. They rarely think about decisions. Yet, if I had to describe what has occupied my wife and me since my diagnosis, it would not be the symptoms themselves but the relentless stream of decisions that have accompanied them. Every week seems to bring another crossroads, another judgement call, another moment where there is no obvious right answer and no opportunity to postpone the choice for very long.

Once I started writing them down, I realised the list wasn’t ten questions long. It wasn’t twenty. It was hundreds.

Just a few of them include:

• When should I start using a wheelchair?
• How do I know when it’s time to stop driving?
• Should we renovate the house or move?
• When is it time to bring in a carer?
• What kind of carer do we need?
• How do we pay for that care?
• What benefits am I entitled to, and who can help me claim them?
• What happens to work and retirement?
• What legal documents should we complete while I still can?
• What foods are no longer safe to eat?
• When should we begin discussing a feeding tube?
• Which therapies are genuinely worth the time, money and effort?
• What equipment should we buy now, and what can wait?
• How do we prepare for the next stage without allowing it to consume today?
• Where, for that matter, does one even buy adult continence products?

As I looked at that growing list, something else became obvious. Every decision immediately generated another set of questions. The issue was rarely just what to do. It was when to do it, how to do it, who could help, and how to know whether we had left the decision too late or made it too early. The disease keeps moving, so today’s solution often becomes tomorrow’s new decision.

In my previous life I spent almost thirty years helping organisations navigate large and complicated transformation programmes. We built governance structures, project plans, steering committees, risk registers and carefully sequenced workstreams designed to reduce uncertainty. Looking back, it now feels faintly ironic that the largest transformation programme I have ever managed arrived after I retired. It came with no project plan, no established methodology, constantly changing requirements and a programme director whose handwriting has become almost illegible.

Consulting, it turns out, offered surprisingly little preparation for Progressive Supranuclear Palsy. Well maybe a little!

That certainly isn’t because help doesn’t exist. We have been extraordinarily fortunate with the professionals who have supported us. My GP has been exceptional. My neurologist has guided us through difficult medical decisions with skill and compassion. Our healthcare fund, physiotherapists, occupational therapists and many other professionals have each played an important part in helping us adjust to life with PSP. I have also read many excellent resources produced by CurePSP, PSP Awareness, the PSP Association, the Mayo Clinic and others. They explain the disease clearly, summarise the evidence and provide invaluable starting points for patients and carers.

The difficulty is not that the information is poor. It is that no guide can answer the question every family eventually reaches: “What should we do next?” That answer depends on the country you live in, your healthcare system, your finances, your family, your home, your symptoms and the particular way this disease is unfolding in your own life. Even specialists cannot answer many of those questions because they are not purely medical decisions. They are life decisions, made under uncertainty, while the ground is still moving beneath your feet.

That is why I have come to value something almost as much as professional advice: the wisdom of people who are already living this journey.

The Facebook PSP groups, the HealthUnlocked community and conversations with other patients and carers have often provided the practical guidance that no textbook can offer. Someone is always a little further down the road, quietly explaining what they wish they had known earlier, how they recognised that it was time for a carer, how they approached a feeding tube, or what surprised them most about adapting their home. They are not offering universal answers because none exist. They are simply shining a torch a little further down the road than I can currently see.

For that, I am profoundly grateful.

As I began organising my own notes, I realised that they might be useful to someone else. What started as a personal list has gradually become a growing collection of questions drawn from six years of writing about life with PSP. It isn’t another guide to the disease, because there are already many excellent ones. Nor is it intended to tell anyone what they should do. Every family, every healthcare system and every journey is different.

Instead, it is simply a collection of the questions that my wife and I have found ourselves asking, organised in one place in the hope that another family might discover some of them before they become urgent. It reflects our experience, not universal truth, and readers should always seek advice from the professionals who know their own circumstances best. It was obviously biased towards my journey and doesn’t reflect the end stages of PSP fully because I’ve not been there yet but it is a start and if it helps anybody then I’m grateful.

I’ve linked to the document here – https://benlazpsp.com/the-psp-decision-map/ (and there is a printable version there) for anyone who thinks it may be helpful. Please use it however you wish. If it prompts a conversation with your neurologist, helps a spouse think ahead, or simply reminds someone of a question they hadn’t yet considered, then it has served its purpose.

If a PSP organisation, charity, researcher or support group believes these ideas could be developed into something broader, I would genuinely be delighted. They are very welcome to build on them, improve them, adapt them for different countries or incorporate them into their own resources. I don’t see this as my project. I simply hope that six years of living with PSP, and the hundreds of blogs I have written during that time, might save somebody else from having to discover every important question for themselves.

If you think of another question that belongs in the document, I’d love to hear it (please only put questions on the comments section of the page https://benlazpsp.com/the-psp-decision-map/). Every patient and every family learns something different. Collectively, those experiences are far richer than anything one person could ever produce alone.

Living with PSP will probably always involve making decisions “on the fly.” I doubt any guide can ever remove that completely. But perhaps it can reduce the number of surprises. Perhaps it can encourage one family to ask an important question a little earlier than we did. If so, then writing it will have been worthwhile.