I have been writing a book.
That sentence, on the surface, is simple. Man writes book. It happens every day. People bang out memoirs in coffee shops and upload them to Amazon and move on with their lives. But this book — the one I have been writing for months, the one that is now 209 pages and eighteen chapters and a prologue and an epilogue and a dedication page that made me cry when I wrote it — this book did something to me that I was not expecting.
It wrote me back.
Let me explain what I mean by that, because it matters, and because if you have Parkinson’s Disease or any chronic illness that slowly, quietly, methodically dismantles the person you used to be, this might matter to you too.
What the Book Is
The book is called Not Just Shaking. Same name as this blog, because the blog is where it started, and because the name still does the same job it always did — it corrects the single biggest misconception about this disease before you’ve even opened the cover.
It’s a memoir. My memoir. An honest, unfiltered, occasionally sarcastic account of what Early-Onset Parkinson’s Disease actually does to a life when you’re still in your fifties, still married, still somebody’s father, still trading the markets from a small room in Tennessee with a service dog in the hallway and a half-finished Star Wars model on the desk that has been in three pieces for longer than I’m prepared to admit in public.
It’s structured in three parts — or “Movements,” because the irony of a Parkinson’s book organised by movements was too good to pass up. The first is about the people who survived the whittling — the ones who stayed when the disease started deleting my social life. The second is about the war — the symptoms, the healthcare system, the things nobody puts in the brochure. The third is about the architecture — the accidental collection of systems, tools, rituals, and stubborn refusals to stop that, taken together, constitute the life I’ve built since diagnosis.
It is not a medical guide. It is not a spiritual journey. It is not a cure. It is one man’s honest report from inside the machine, written for the people who are in their own machines and wondering what comes next.
What It Cost
I want to be honest about this part, because dishonesty about the difficulty of creative work is one of the great lies of the internet age, and I refuse to contribute to it.
This book nearly broke me. Several times.
Not physically — although the tremor days and the brain fog days and the days where my hands didn’t want to type were real and frequent and infuriating. What nearly broke me was the emotional cost of remembering.
Every chapter required me to go back. Back to the diagnosis. Back to the years of gaslighting myself into thinking nothing was wrong. Back to the friendships that withered because I couldn’t answer my phone for three weeks. Back to the version of me — the gobby, loud-mouthed, confrontational Brit who would tell you what he thought of your haircut whether you asked or not — who doesn’t live here anymore. Writing about that man, in past tense, was a kind of funeral. And funerals are exhausting even when you’re the one doing the eulogy for yourself.
There were chapters I couldn’t finish in one sitting. Not because of the Parkinson’s — because of the weight. The chapter about Sarah required me to sit with truths about our marriage that I had been carefully not examining too closely, because examining them meant admitting how much she carries. The chapter about my family in the UK required me to confront the Glass Wall — the invisible barrier that Parkinson’s puts between you and the people you love, the one that makes reaching out feel physically impossible even when you know the silence is hurting them.
I cried twice reading chapters back to myself. I am telling you this because I am a 54-year-old man who writes about dopamine depletion using computer metaphors and I think it’s important that you know this book made me cry at my own desk, with Purple asleep in the hallway, and that I kept writing anyway.
What It Gave Back
Here’s the part I wasn’t expecting.
Writing this book forced me to reach out to people I had ghosted.
That sentence deserves its own paragraph because it changed my life more than any chapter in the book.
The Glass Wall — the thing I wrote about on this blog, the thing that makes Parkinson’s patients disappear on the people who love them — had been up for years. My sister Debbie, holding the family together four thousand miles away. Friends I hadn’t spoken to properly in months. People who had sent texts I hadn’t answered, not because I didn’t care but because the disease had made the act of responding feel like pushing a boulder uphill in the dark.
But you can’t write a chapter about someone without talking to them. You can’t write honestly about the people who held the floor up without telling them you’re writing it. And so the book became the reason to make the calls I couldn’t make before. The book gave me permission to break through the Glass Wall, because the Wall couldn’t argue with “I’m writing about you and I need to make sure I get it right.”
My friend Chris — the one who told me to start the blog, the one who has been three thousand miles away in London for thirty years — read the chapter about himself on the toilet at work and bawled. That phone call, the one where he told me that, was the best phone call I’ve had since the diagnosis. And it only happened because the book made me pick up the phone.
That is what I mean when I say the book wrote me back. It didn’t just record what Parkinson’s had done to my life. It actively repaired parts of it. It reconnected wires that the disease had quietly disconnected. It forced open doors that the apathy engine had sealed shut.
Catharsis — The Thing We Don’t Get
If you have Parkinson’s, you know that catharsis is not a common experience.
The disease takes things. Every day, it takes things. It takes your energy, your motivation, your voice, your ability to do the things you used to do without thinking. And the taking is relentless and cumulative and there is no equivalent in the other direction — no moment where the disease gives something back, no release valve, no exhale.
Writing this book was the exhale.
For the first time since diagnosis, I had a project that turned the taking into something. Every symptom I documented, every loss I named, every piece of the old me that I eulogised on the page — it became material. It became useful. It became a chapter that might help someone else recognise what’s happening to them before it takes them as long as it took me.
The apathy that normally sits on my chest like a concrete slab couldn’t compete with the momentum of a book that was actively doing good. The executive dysfunction that makes starting things impossible couldn’t stop me starting chapter after chapter, because each chapter had a purpose beyond myself, and purpose is the one thing Parkinson’s cannot fake and cannot fully suppress.
Was it exhausting? Absolutely. Was it worth it? Without question. Would I do it again? I’d have to, because the AT-ST is still in three pieces and I haven’t written the chapter about finishing it yet. That might need to be the sequel.
What Happens Next
The book is in first draft. 209 pages. Eighteen chapters. A prologue about my desk and an epilogue about Purple falling asleep on the floor after the last word was written.
There is editing to do. There is formatting to do. There is a cover to design and a launch to plan and an entire process between “first draft” and “available on Amazon” that I am not yet thinking about because the first draft nearly killed me and I am still recovering from the fact that it exists at all.
But it exists. A 54-year-old British bloke with a degenerative brain condition, a service dog named Purple, and an AI called Claude sat at a desk in Tennessee and wrote a book about what happens when a disease tries to delete the person who was living the life, and what that person builds — accidentally, stubbornly, one piece at a time — to keep going.
The book is called Not Just Shaking. And it is, without question, the hardest and most important thing I have ever done.
More details coming soon. Watch this space.
Purple, for her part, slept through the entire final chapter. She earns her keep every single day.
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