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As the year draws to a close and social media fills with “2025 in Review” posts, I’ve been reflecting on my own journey. It’s not the year I ever wanted, nor one I would have wished on my family. That goes without saying. I would never have chosen the trauma, pain, fear, and unsettling changes that come with living with PSP.
I retired. I stopped driving. I now rely on a wheelchair to get around. I’m one step away from a feeding tube and face a terrible oncoming storm. PSP has made me slow and stiff, and just recently I’ve noticed how incredibly hard it is to turn in bed or get dressed. After a brief plateau, the progression feels unstoppable again. It’s been hugely destabilizing for my family in ways I won’t detail – just imagine your daughter taking your place on a long-awaited, expensive cruise with your wife to celebrate your joint 50th birthdays. When your specialist says, “I’m sorry it turned out this way,” you know things are far from normal.
No one could call PSP anything but horrible. But there’s another story running alongside this one, a story that deserves attention.
Compared to what I feared at diagnosis and immediate retirement, life has been surprisingly normal. Beyond that, I’ve achieved things I never imagined and even had moments of joy. Thankfully, and I pray this continues, I’ve retained my cognitive ability, which I know many don’t. For that, I’m deeply grateful. I may not walk or run, but my mind is healthy (well, as healthy as before).
Support from my family and friends has been exceptional. Despite the puncture wounds, family life goes on. I’ve been blessed to see my daughter get engaged and soon, I hope, married to a wonderful guy from a lovely family. I get to be Father of the Bride. I still laugh and have fun with my kids, even if my humour is terrible and I live “downstairs” now, unable to do the things I used to do. We’re adapting as best we can.
I’ve discovered writing as a passion, an obsession really. I wrote and published on Amazon/Kindle a book in a week (I am not promoting it in my blogs so no links – it is a separate thing). It still amazes me. It’s actually being read by people. I’m honoured and humbled, although it does feel a little like having my school homework being marked by many teachers :-). This year, I’ve written hundreds of posts on LinkedIn and my PSP site, reaching far more readers than I could have imagined. It’s not nothing. I still do a little mentoring and coaching, keeping my brain active without stress, and I have rediscovered chess, so I remain largely busy.
More important than the numbers, I’ve found a new community through PSP forums and my blog. I hope I’ve helped patients and caregivers understand PSP from one person’s perspective, and I’ve learned so much through those interactions.
It’s been a rollercoaster, terrifying at times, but I’m surprisingly calm. Most days are a mix of busy and boring, and yes, full of yogurts and untextured food. Each of us has different goals and experiences. This is just mine, shaped by my past life and the blessing of a supportive family.
I look ahead with fear, nervousness, stubbornness, resilience, and faith. I have yet to find a natural balance between overdoing and fighting versus resting and adapting, and that, I guess, is something everyone struggles with. I’ll try to make the best of whatever comes. I wish my family weren’t impacted, but that’s largely beyond my control. I hope they find their way through these waters.
And of course there remain many more days in 2025….
