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Living with PSP is a rollercoaster, moments of hope colliding with harsh reality. Yesterday was the perfect example of those extremes.
The day began well. I played chess and felt sharp, almost like my old self. Then a friend who often shares medical updates I miss (and which, despite this article, I absolutely encourage and welcome) told me about an ongoing trial called TPN-101. It’s an oral drug designed to target LINE-1 reverse transcriptase (whatever that is), which is thought to play a role in neurodegenerative diseases like PSP. Early results suggest it may slow disease progression, and it has been fast-tracked for PSP by the FDA.
I’ll be honest, it got my hopes up, and I quickly emailed my specialist for more information.
Later, after a rest, I went to a wedding celebration. For the first hour, after resting in the afternoon, I felt good, laughing with friends, enjoying the moment.
Then came the crash, out of nowhere (but no longer a surprise), I was overwhelmed by PSP. I don’t know if it was the crowd, the difficulty of navigating in a wheelchair, or getting stuck a couple of times, but I simply powered down.
It’s a terrifying feeling, fully conscious yet unable to do anything but stare into the distance. My wife and a friend helped me back to the car, but it took a long time to recover. I think we left quietly without causing a scene, but it was heartbreaking for me and for her.
This morning, my specialist replied and I asked support groups for information. The news? Mixed. The trial looks promising and has FDA Fast Track designation, which is encouraging. But it’s not available in my country. And even if everything goes perfectly, it will likely take three to five years before patients like me can access it.
For me, that’s probably simply too late. I’m grateful to know about it, but the reality is sobering.
There’s a question many of us in this community face: would we uproot our lives for the smallest chance that a trial might help?
The trial is in the US. It’s long, and it involves a placebo. Even if I moved, which isn’t realistic, there’s a high chance I’d get the sugar pill. Personally, I’m not willing to do that. PSP is advancing quickly. My priority is to spend time with my family and focus on quality of life today, not chase a “maybe” thousands of miles away. If the drug were proven and licensed, it would be different. But that’s not where we are. There are currently no trials at home which is something I know some very good people are trying to change.
The last 24 hours reminded me of two things: how quickly PSP can turn a good day into a hard night, and how far science still has to go, and how painfully slow the timelines are compared to our reality.
So for now, I’ll focus on what I can control and the good things in my life: family, friends, the good hours when they come. I’m also writing my third book, though that’s a little way off, and I’ll try to preserve my strength for the journey ahead.
I have a family wedding which is the most important thing to me on the horizon – as the Father of the Bride – and I am determined to do all I can to be at my best come what may. This is my mission in the short term.
TPN-101 gives hope. But for many of us, it’s a hope that may arrive too late. And that’s the hardest truth of all.
