Waiting for the punchline

Last night I was on a bus, when a young gangster who’d been staring at me rushed towards me, clearly about to attack me. I was really scared and managed to punch him three times in the face. An unbelievable story? Of course - I have not set foot on public transport for 11 months! …

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Charting Parkinson’s symptoms: from symptomometer to app

After reluctantly joining the Parkinson’s community it struck me how difficult it is to remember the progression and impact of symptoms, and how useful it would be to do so. My journey has taken me through identifying my symptoms, designing a way to chart them, to discussions with the Chief Solutions Officer of an app.  …

Living with Parkinson’s…or fighting it?

I live with ParkyBoy. He’s with me all the time. He’s not going away. It doesn’t mean I always like his personality, or don’t wish that he would move out. But here we are. Although part of me wants to kick him out, I feel more that I need to learn to live with him. …

See what I can see

Apart from a few scratchy violin and guitar lessons as a kid, I’d never picked up a musical instrument. In 2015  I persuaded a friend to join me in trying out a ukulele course. Fast forward to 2021 and, miraculously, I find that the band we’re in has just released a song and accompanying video!  …

Feelin’ shaky

When an annoying collection of particular, individual Parkinson’s symptoms get together and gang up on me, I invariably think of Simon & Garfunkel’s beautiful ‘59th Street Bridge Song’.  “Feelin’ shaky” has become a common part of my language and a regular, but unpredictable, part of my life. And trust me, there’s nothing ‘groovy’ about the …

“…it’s a world of dread and fear”

Do you recognise this title? Do you know where it’s from? What about: “...in Africa…where nothing ever grows, no rain or rivers flow”, does that make it easier? Band Aid’s ‘Do they know it’s Christmas?’ came out on December 3 1984, and I found myself reflecting on it, in connection to Parkinson’s, just this week. …

“Is that map upside down?”

As we’ve gone through this year of Zooming, for work and social reasons, it’s been common for someone, peering out of the screen and past my right shoulder to ask “Is that map upside down?”. My stock reply is “No, it’s a different way up! It’s another way of looking at the world.” I am …

Looking at lockdown through the Parkinson’s lens

Kerry rang me, distressed, early on the morning of Tuesday March 17: “You’re in a ‘high risk category’!”. Eight months after being diagnosed, during which nothing much had happened, this was one of the moments that made my Parkinson’s real. But what did ‘high risk’ mean, and what would it mean for me and others …

The slow movement

I’ve never been someone who people would label as dynamic and fast-moving. For most of my life I’ve been happy with that. I appreciate ‘slow’ food. I love long train journeys. I enjoy spending hours preparing a meal for friends, then hours more eating it. I’ll take the nuances of 4 or 5 day cricket, …

Coming out of the Parkinson’s closet

My new wardrobe under construction I’ve had two projects going on recently: constructing several items of flatpack bedroom furniture, and building ParkyBoy, alternating between the two. Writing ParkyBoy I realised there was a connection. I was creating a way out of the Parkinson’s closet, just as I was building a physical wardrobe!  What do I …