Six months ago, I was officially diagnosed with “what appears to be” Progressive Supranuclear Palsy (PSP), a rare and relentless neurological condition. While the disease has progressed (and now the “what appears to be” has disappeared, so has something else: my perspective. This is my take on where I am – and as a spoiler it is a good report card – and is thanks to you.
Diagnosis & Perspective
Technically, it’s been five years since PSP entered my life – though I only got the official word in February. Back then, it was the “more likely” diagnosis. Now, it’s not just likely – it’s pretty much a done deal. It’s progressed significantly and as I wrote last night it has declined practically (eyes, balance, slowness leading to a wheelchair and lots of falls etc), and many of the Parkinson’s-like symptoms have faded into the background.
I’ll be honest: February was rough. I was more than a little depressed. I wrote about it – describing my home as a prison, grappling with retirement, giving up driving, and all the other tough stuff. It was a lot.
But last night, I had a bit of a revelation. The real reason I’ve been feeling so positive – even inspired – is because of the people around me. That includes you, the readers of this blog.
Unexpected Inspiration
I’ve been getting more and more feedback lately – not just on specific posts, but also general messages saying I’ve somehow helped in many people’s lives. People even quote my own articles back to me! One person told me how much they appreciated the piece where I talked about treating my home as an ark, not a prison. That really stuck with me.
“I used to see my home as a prison. Now, I see it as an ark – a place of safety, love, and purpose.”
I never started this blog looking for feedback. Honestly, I began writing it just to talk to myself and then to pass updates to family. But the inspiration I feel now comes from knowing there are so many people out there – some like me, some completely different – who are dealing with PSP, Parkinson’s, or similar conditions with grace, grit, and faith. And let’s be real: being a caregiver is probably even harder.
Family, Faith & IKEA
Of course, my friends, my family, my children – and especially my wife – are my daily inspiration. They’re my reason for living and they keep me grounded (sometimes very, very grounded and in the case of my kids a little too grounded when I keep being the butt of jokes which I of course not so secretly love). But the response to this blog, knowing it’s helping people, is a huge part of why I’m still feeling positive. So thank you. Truly. Keep the feedback coming – even if it’s not always glowing.
Let’s be honest: PSP is terrible. It will never not be terrible. But just like so many others facing tough situations, we’re all trying to make sense of it and cope in our own way. I’ve met so many incredible people on this journey, and they inspire me to keep going.
And then there are the benefits and the slightly changed normality – Today, for example, my wife and daughter are going to IKEA. In the past, this would’ve meant me being dragged along to drive and carry heavy boxes. Or being told to stay home and “not get in the way.” Now? I have options. I’ve got a “get out of jail free” card called PSP and a wheelchair. I can stay home guilt-free… or I can go along for the ride.
I’m leaning 70% yes, 30% no – mostly because I can cruise around in an electric wheelchair and not walk miles through a store I don’t even like. Life’s different now, but it’s still life. And it’s all about how you take it.
The Report Card
- Health: Declining rapidly – but not as fast as I feared. So, silver linings.
- Mindset: Stronger than ever.
- Purpose: Found it.
- Faith: Rock solid.
- Family: Still my anchor, still wonderfully “normal” (well, our version of normal).
And there’s so much to look forward to – like the upcoming wedding of one of my children. Every day brings something new.
So honestly, I’d have to say an “A minus” overall (IKEA may swing it)
Thank You, Truly
So, thank you – for reading, for writing, for walking (or wheeling) this road with me. Whether you’re living with PSP, caring for someone who is, or just here for the IKEA jokes, I’m grateful you’re part of this journey. You remind me that even in the hardest moments, we’re never alone. And that’s more than enough reason to keep going.
I used to say this blog was just for me. But the numbers say otherwise. Over 40,000 different people (or at least IP addresses) have visited, with 87,000 views across 125 countries – every continent except Antarctica. Apparently, penguins aren’t fans.
I am going to try to add a Spanish language translation as my next adventure – stay tuned!
And as for my close family? They say I post too much and they get the “live version” anyway. Fair enough.
Just to end on a caveat – I hope my attempted humour is not seen as flippancy – as I said no one wants this, it is shocking but within that frame life continues and I genuinely wouldn’t swap places with anyone right now.
