Living with PSP often feels like a one-way street.

Every few weeks, sometimes days and occasionally months, there seems to be another decision to make. Stop driving. Start using a wheelchair. Change what you eat. Consider a feeding tube. Think about a hospital bed.

Most of those decisions move in one direction. Less independence. More support. More equipment. More adaptation.

The challenge is that PSP moves quickly. You identify a problem, consider the options, make a decision and organise whatever help or equipment you need, only to discover that the disease has already moved on. Reversing those decisions is often difficult or impossible, and the fear of making them too early can mean leaving them too late.

Take wheelchairs.

I recognised that walking was becoming increasingly dangerous, even with a walker. I was falling far too often. My daughter’s engagement party and wedding were approaching and, more than anything, I wanted to make it safely to both. The thought of a serious fall was simply not worth the risk. A wheelchair doesn’t arrive overnight. There is a process, and I decided to move forward despite a few weeks of serious inner debate.

But when is the right time?

Act too early and you may give up independence that you could have kept a little longer. Act too late and you risk injury. By the time you have made the decision, the solution you chose may already be insufficient.

The same principle applies to almost everything in PSP.

My neurologist strongly recommended a PEG feeding tube because of the risk of choking. I have declined and decided instead to radically change my diet and manage the risk that way. So far, it has worked reasonably well. I’ve had a couple of close calls and I am constantly reassessing the situation, but for now I believe it remains the right decision for me.

Soon I will have to decide whether to move permanently into the hospital bed that will be delivered soon and will also have a winch. The calculation is familiar: balancing the risk of falling from bed against the comfort of sharing my own bed with my wife. I have fallen once, but this is a very serious lifestyle choice. There is rather more at stake than simply changing mattresses.

Even medication involves similar decisions. When severe nerve pain appeared, the doctors recommended gabapentin. The dose eventually climbed to 3,600 mg a day. It is not a medication I particularly enjoy taking because of its potentially significant side effects, but it controls what would otherwise be unbearable pain. I made what I felt was the right decision.

Whether it is wheelchairs, feeding tubes, medication, incontinence products or avoiding crowded environments, life with PSP becomes a long series of judgement calls.

The reality is that there are very few precise rules. There is no magical score that tells you exactly when to make a change. Different people reach different conclusions, and often neither approach is obviously wrong.

Ultimately, these decisions are educated guesses, balancing what you lose by making a change against what you risk by not making it.

My priorities are fairly simple. Avoid choking wherever possible. Avoid falls wherever possible. Both can have consequences far beyond the immediate event. But safety cannot be the only consideration. Quality of life matters too. For me, that means accepting a wheelchair while, for now, deciding against a PEG. Both decisions involve risk, and both remain under review.

So far, I think I have managed those competing priorities reasonably well.

But recently I discovered something rather surprising and, in fact, very positive.

Sometimes you can engage reverse gear.

My electric wheelchair had effectively been decommissioned. Given my visual difficulties, freezing episodes and the general risks associated with PSP, there were good reasons for that decision. Outdoor use remains firmly off the menu (ignoring my slightly ill-advised escapade last week).

But indoors is different.

The chair is actually easier and more comfortable to manage inside because I can keep my feet on the floor rather than trying to use the footrests, which make it far too short and give me terrible leg pain. That arrangement has risks of its own, particularly for my feet, but with sensible safeguards in place and usually with a carer nearby, I decided it was worth trying again.

And this is where something important has changed.

The wheelchair hasn’t changed. My PSP certainly hasn’t improved. But having a live-in carer and adjusting the speed at which I go mean that I can manage some of the risks differently. A decision that made sense a few months ago can now be reconsidered.

And I really enjoy it.

Suddenly I can move around the (downstairs of the) house under my own power. I can decide I want to go into another room and simply go there. I do not need to ask somebody to push me. I do not need to wait for assistance most of the time, and I can move around the house spontaneously in a way that had slowly disappeared from my life.

That might not sound particularly exciting if you can stand up and walk into another room whenever you choose.

Believe me, it is.

When your independence is gradually being chipped away, even a small piece of it returning feels special. It is not just practical. It is psychological. I am not simply being transported from one place to another.

I am actually doing something for myself.

Of course, there have been a few teething problems. Mostly involving my feet.

It turns out that occasionally driving an electric wheelchair into a wall is not an especially effective strategy for maintaining foot health. My driving technique is clearly a little rusty, and my toes have paid the price a few too many times. They have registered their objections, although so far I have chosen to ignore their advice about giving up driving altogether.

Beneath the questionable driving lies a serious point.

There is a difference between reversing the disease and reversing a decision that was made because of the disease.

My PSP has not improved. My vision has not recovered. My mobility problems have not disappeared. The risks have not magically vanished either.

Some days I still cannot use the chair at all. Last weekend, for example, I was tired, weak and had to rely on being pushed around. PSP continues to dictate much of what I can and cannot do, often without the courtesy of giving me advance notice.

But circumstances change. Support changes. Equipment can be adapted. And sometimes a decision that was absolutely right at the time no longer has to be permanent.

It does feel good to buck the trend now and then.

Perhaps that is something worth remembering when living with a progressive disease. We spend so much time preparing for the next loss, the next adaptation and the next difficult decision that it is easy to assume every change must be in the same direction.

Sometimes it doesn’t have to be.

PSP remains a progressive disease. Tomorrow may bring another difficult decision, another adaptation or another loss of independence. I am under no illusions about that.

But today I can move around my home under my own power. Today I can decide where I want to go (within an incredibly small space) and simply go there.

My feet may not be entirely enthusiastic about this development.

But in a disease that so often moves only in one direction, finding even a small patch of reverse gear feels rather wonderful.