It’s hard to believe how quickly PSP is accelerating. Today, a professional came to help us prepare for a carer, and at the same time my eyes have started giving me the worst trouble since this journey began. The behaviour of each eye is a mystery, and together they’re causing enormous challenges with my vision. As I write this note, my right eye is leaking tears, in real pain, and doesn’t want to shut, is swollen and during physio my left eye simply wouldn’t open. The step-ups are far more frequent than they were even a couple of months ago. It doesn’t feel linear – it feels exponential. I am sorry to write this, as everyone wants good news, but I have to maintain my honesty and this is the way I see it. I started the day choking this morning while taking my medication, and my body feels stiffer than ever.
For the first time, I truly feel like a dependent and disabled person – although I am still significantly independent in that I can dress and wash myself, with disability bars, a chair, and a lot of time and care. Everything in a wheelchair takes that much longer to do. The picture of how things evolve is becoming painfully clear. It’s obvious why those further along need to start thinking about more personal and deeply private forms of preventative solutions. I am being vague but I know what I mean. This is also the reason for the urgency regarding my book publication – I wanted to complete it while I still can, while I can still read.
This is where I enter my nightmare zone: full disability. More than ever, it feels just around the corner.
I always intended this blog to come from a positive place, and I won’t let that go. But positivity has to sit within the reality of a disease that I’m only now beginning to understand in its full severity. I’m still exercising, using the electric wheelchair indoors, spending quality time with my family, and thankfully I’m comfortable with limited pain. In many ways, that’s deceptive. But…
Just two weeks ago, I said to someone: “I don’t understand how PSP takes you from here so quickly to the end.” I couldn’t grasp how people at my stage could move so fast to an obituary within two or three years. Now I understand. I can see the progression.
Thankfully, my mind is still sharp. I hope it stays that way, even though I can see why some might consider losing cognition a blessing. For me, documenting this journey matters. I’m still writing – though dictation is becoming more frequent – and my eyes ache as I do so but I know I won’t sleep without getting this off my chest. I’m still laughing. I’m still a pain in the neck (and other places!). But don’t confuse my humour and positivity for kindness towards PSP. It’s brutal. And because it moves in one direction – seemingly exponentially – it’s all the more frightening.
I take strength from G‑d and believe this is the path I’m meant to tread. Others have faced far worse, but this should be a message to the medical community: keep up your incredible work, and please find solutions for those who will face PSP next. I read about the $75 million grant to the University of San Francisco for PSP research. While it focuses on the PSP‑RS strain (which I likely don’t have), recruitment hasn’t even started and completion is projected for 2029 – far too late for me. Still, it’s encouraging.
However hard this acceleration feels for me, I know it’s harder for my family, watching from the sidelines whilst they try to continue their lives. I wish them the smoothest possible journey through this process.
As a religious person, I must not sound despondent. I trust G‑d completely and know that all is ultimately good. From my current window, it looks bleak, but I don’t have all the information – so I’ll trust the One who does.
