What happens when I can no longer write this blog? Will I have a backup plan?

A few people have asked me this question recently. – do I have a backup plan? There may come a point where I can no longer write. That could happen for several reasons, but the most likely one is simple: PSP eventually overwhelms me and forces me off the road I am currently travelling.

People have asked openly, “What happens then? How will we know how you are doing? How will we know how things progressed?”

We are all grown ups. We have seen people fighting publicly and then, a year later, we suddenly see their obituary. It fills us with dread because we know what it probably means.

It is something I have thought about carefully because I experienced something similar myself. When I believed I had Parkinson’s Disease rather than PSP, I followed the articles and interviews of someone who strongly advocated exercise and became a kind of role model for many people. He put himself out there publicly and inspired others to fight back. Then suddenly the updates stopped. Some time later I discovered that he had passed away. It left me with many unanswered questions.

So I want to say this clearly and honestly now: I have no contingency plan for this blog.

I am not going to ask my family to post updates if a day comes when I can no longer write.

There is a reason for that.

I am not someone extraordinary. I am simply a PSP patient moving through the course of this disease who chooses to write openly about it. That may be unusual, but I am far from alone. Every PSP patient’s journey matters just as much as mine does.

The reality is that losing the ability to write is not some dramatic turning point unique to me. It is the natural progression of a brutal disease. Unless treatment or a cure arrives in time, that moment will almost certainly come eventually.

And no, it will not be good news when it does.

If I stop writing, it will almost certainly mean that PSP has reached a more advanced and toxic stage. That is the truth of this disease. From everything I have seen, there are no perfect endings to PSP stories. So if communication fades one day, people will understand why without my family needing to explain it publicly.

By the time that moment arrives, I think I will simply want to be a normal patient spending whatever time I have left with the people I love. I believe I will want privacy, dignity, and quiet more than public updates.

But most importantly, that moment should not cause anyone to lose hope.

My attitudes and beliefs will not suddenly disappear because my condition worsens. I will still believe in fighting for quality of life. I will still believe in squeezing meaning out of every day possible. I will still believe that mindset matters. I will still believe in faith, family, humour, and purpose.

For those reasons, the website will remain online and available for a period of time. If I am able to write, I will write. If I cannot, then it simply means the disease has progressed further along its course.

What I would ask instead is simple: pray for my family, pray for strength, and support the next generation of PSP advocates who continue speaking up long after I no longer can.

As I wrote previously, that day may still be many years away. I genuinely hope it is. But whether it comes sooner or later, nothing I have written changes because of it. PSP will simply be doing what PSP does, and I will continue to place my trust in G-d.

I am not planning to do anything dramatic, reckless, or hasty. I intend to continue approaching life with PSP exactly as I do now: one day at a time, trying to squeeze every last bit from the toothpaste tube for as long as possible.

This may all prove premature, and I may even regret writing it, but enough people have raised the question that I know it exists.

And when the time finally comes to move on to what I hope is a better place, I hope my family will eventually find peace in knowing that we did what we could, we faced this honestly, we loved each other fiercely, and we did our best not only to survive, but also to live.