Parkinson’s is, above all else, an unpredictable fucker. I had no idea it was coming until, in the autumn of 2021, I started dragging my feet and then shaking so much that I ended up in A&E. My Parkinson’s was a genetic mutation, running in the family, a miserable inheritance, depleting the dopamine that transmits messages from the brain to the body. It’s an old man’s disease that came to take me on its journey at the age of 52.
They didn’t diagnose it in A&E though. That happened in the follow-up appointment. I often dwell on that afternoon, in the run-down wing of a hospital in Haywards Heath, replaying the transition from the innocence of the drab waiting room to the gut-punch that was delivered behind the doctor’s door: “Mr. Burley, you have Parkinson’s disease.” My life divides now between before and after Haywards Heath.
“I didn’t feel like a victim, never saw myself as disabled.”
My first instinct was to keep it secret, and I did — for a year. Many with Parkinson’s do the same. The urge to hide it is widespread among those who have it. Almost 23% report concealing their diagnosis from family; 85% report feeling embarrassed by their condition, and 57% avoid or cancel social situations. Sufferers are scared — rightly or wrongly — of being written off, patronised or defined by the illness. Even more deeply: the less visible it is, the further away seems the endgame. Parkinson’s is a progressive, degenerative disease. It will get worse.
So you can’t hide it for long. It doesn’t help that the medication often has side effects as wild as the symptoms themselves: daytime sleeping, involuntary muscle movements, impulse control disorders and vivid hallucinations. Any of this will grass you up pretty quickly. Realising this, I began to be open about it. But as far as I was aware, it was still invisible to the outside world. Over the years, I have done plenty of public events and on-camera appearances, and nobody has said a word about the way I move or hold myself steady. It’s only now I realise how important this has been: it feels OK for people to know I have Parkinson’s, provided they can’t see it.
I didn’t feel like a victim, never saw myself as disabled, nor felt any embarrassment because I looked “normal”. Until last week, that is, when, for the first time, I felt the sting of the pointed finger and accompanying laughter directed at someone weird, different, or disabled.
Camilla Tominey’s Sunday morning political show on GB News starts mercifully late, but for the insomniac wing of the Parkinson’s massive, you’re always running on empty. I’d managed only three hours the night before. The heat didn’t help, but interrupted or occasionally non-existent sleep has been a permanent feature of my life, whatever the weather, since the diagnosis. I have learned to live with it.
Given my insomnia and unpredictable symptoms, why had I agreed to a live TV appearance? This is a side of Parkinson’s that you don’t hear about very often. For me, particularly over the last year or so, the corrupted file on my internal hard drive has rewired me. I am more driven, more creative, and more willing to take risks.
This isn’t unusual: 20% of those with PD report a surge in creativity and the drive to achieve more. There are countless stories of people who, without any prior interest in the arts, discover a new, often intense, obsession with poetry or opera, sculpture or pottery. These effects are created by a powerful combination of the psychology of time being short, the condition itself, and medication, which can be “disinhibiting”.
So, there I was, shattered but confident in the studio next to Camilla, looking forward to countering the increasingly hysterical press coverage of the small boats “crisis”. My Parkinson’s didn’t cross my mind; I was focused on providing some engaging and challenging content. I love the energy of live TV and before I knew it, it was all over, and all was well.
On the train home, I opened X, expecting some pushback. Obviously, many GB News viewers would disagree with my plea for some perspective on migrants. So it was no surprise to read that they thought I was “obnoxious”, “awful”, and “dreadful” — in a way, that’s what I was there for.
However, a new theme started to emerge among the messages, complaining that I couldn’t “keep still”, and thought I was “hard to watch”, and “very odd”. One concluded I must be “pissed/hungover/on something”. Another asked, “Who is this pisshead on GB News?” “Is he on drugs?” Yes, I was, one decided “(He’s) clearly coming down from a kilo of Charlie.”
I was confused. Had I been slurring my words or swaying in my seat like a drunk? Or was it simply that I was irritatingly deviating from Reform UK’s talking points? I needed to check. So, I took the painful step of rewatching the newspaper review. The truth was sobering: true, there was some gross exaggeration by a certain unpleasant cohort; but they had a point. There was a hesitation in my voice, and I did sway in my seat. It was briefly upsetting to be so cruelly sent up, but I appreciated the brutal economy of one two-word takedown: “Twitchy Twat.” Take a bow, whoever wrote that, and while you are at it, rot in hell.
So it wasn’t the piss-taking that bothered me, so much as the stark realisation that, after that appearance, I’m no longer an invisible Parkinson’s patient. My TV appearance marked an unwelcome milestone on the road to a frightening future.
A long time ago, at the beginning of what you might call my Parkinson’s journey (Destination: the grave), I arrived at my first PD exercise class determined to break the habits of a lifetime, become a good joiner, and embrace my group of fellow sufferers. My resolve deserted me the moment I put my head around the door and saw how these people moved, how ill they seemed, and how old they were. Afterwards, I couldn’t get out fast enough, and I’ve been running ever since. But I now know that one day I’ll have to stop running and take my place in the group.
Unless, that is, the elusive breakthrough comes and we work out how to slow or cure the disease. You never know; Parkinson’s is, above all else, an unpredictable fucker.
