My Parkinson's

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After my first series of tests with a neurologist in 2023 his immediate verdict was  - “There’s no doubt about it, you have Parkinson’s Disease”. Now that’s a one liner I’d prefer to forget!  I left shell shocked, with a prescription and a long list of “do nots” … which happened to be everything on my “to do” list. My wife Krystyna and I had suspected as much, but hearing it out loud was a rude awakening to a whole new reality!

Parkinson’s Disease (PD) is a progressive, neurodegenerative disorder caused by the loss of dopamine-producing cells in the brain resulting in tremor, stiffness, slow movement and balance issues, as well as non-motor symptoms (e.g. depression, anxiety, apathy, hallucinations, constipation, orthostatic hypotension, sleep disorders, fatigue, temperature dysregulation, loss of smell, and various cognitive impairments).  

And the zinger? There’s no cure. At diagnosis you've already lost about 40-60% of your dopamine producing neurons. You’ve likely had it for years before diagnosis (in my case at least 12 years). And as it gets worse you simply increase the medication. Great.

I am naturally a positive person, ‘suck it up you’re a Para’ was always my typical male response.  Ignore the pain.  Suppress emotions.  Just deal with it. Seemed to work when on active duty having to push through pain, anxiety and hardship to ensure my platoon and I survived. And when fighting to recover after losing most of my guts at age 28 and having life-saving emergency surgery multiple times. 

But this is different. Personally, PD is more confronting than anything I’ve ever experienced. It’s like a thief slowly stealing my capabilities and identity.  It doesn’t go away and it’s constantly changing. I can’t push through symptoms, I can’t bury my emotions, and more importantly - I can’t do it alone. Because it isn’t just about me, Parkinson’s affects everyone in my circle – especially my family and close friends.

But life does go on.  Having a sense of humour helps, as does focusing on what I can do rather than what I can’t.  

A new book and a blog

As a writer with PD it’s been an especially interesting journey. My work flow is a little different, things take longer to write, and shaky fingers produce creative spelling which leads to lots of swearing on my part.  But I’m not stopping anytime soon!

In fact, my journey with PD has inspired the current book I’m writing - a novel based on my life, and my (and my loved ones’) lived experience of Parkinson’s.  Planned for publication in late 2026.  

Coming soon is also a new blog on living with Parkinson’s that’ll be linked to this page.  So as you can see, there’s lots of life left in this “old dog” yet!