My Parkinson’s diagnosis has shown me how kind society really is

Having Parkinson’s has shown me a different side of society

21 February 2020

10:00 PM

21 February 2020

10:00 PM

Like Ozzy Osbourne, I was last year diagnosed with Parkinson’s disease, the degenerative condition that impairs the functioning of the body. In a series of recent interviews, Osbourne has spoken frankly about the impact of the neurological disorder. ‘That thing has knocked the shit out of me,’ he said, Brummie-style. I’m with Ozzy. It’s done the same to me.

My difficulties began about 18 months ago, when my left leg developed an involuntary twitch, which soon extended to my other limbs. My gait became increasingly awkward, alternating between a strange quickstep and a longer, more laboured shuffle, complete with stoop and limp. The effect was like a cross between John Inman in Are You Being Served? and Ygor, the misshapen assistant played by Bela Lugosi in 1942 horror movie The Ghost of Frankenstein. To my dismay, my handwriting also deteriorated to a tiny, illegible scrawl. This physical decline was accompanied by waves of chronic, irrational dread. As I grew ever more immobile, I was seized by fears that I was sliding into financial trouble, or that my home would be burnt down, or that Jeremy Corbyn would become prime minister.

Humans excel at self-deception. For ages I tried to tell myself that my deterioration was just due to a severe but temporary recurrence of my sciatica, a long-standing back problem for which I had undergone surgery in the 1980s. But the mix of tremor, terror and torpor worsened, so in September I arranged to see a highly-regarded back specialist. My delusion evaporated the moment I limped into his consulting room. ‘I’m afraid there is no point in my examining your back. You don’t have sciatica. I am pretty certain you have Parkinson’s,’ he said in a kindly but authoritative manner, adding that he would refer me to a neurologist.

I tried to remain stoical in front of him — a task made easier by the fact that a momentarily frozen face is one of the classic symptoms of Parkinson’s. But as soon as I had left the building and phoned my wife with the news, I began to weep. It was a shaming moment for a 57-year-old man, out on the street in a flood of tears, but I couldn’t help it. The future was a picture of apparently imminent and remorseless decline. After extensive tests and brain scans, the neurologist confirmed the diagnosis.

At this point, I suppose I am meant to make defiant noises about my battle with Parkinson’s and my refusal to let the condition define me, but I was born an Ulster Protestant. Heroic confidence is not my style. Patrick Hamilton, the chronicler of genteel English despair, is my favourite novelist, autumn my favourite time of year and I’m a great believer in the power of negative thinking. Look on the dark side, it’s safer that way. Even so, I can still find sources of inspiration, comfort and hope. By far the greatest has been the devotion of my wife Elizabeth, to whom I have been married for almost 25 years. But there are also my friends: ‘Didn’t you realise that Carlsberg Special Brew is not a health supplement?’ said one. ‘At least you’ll be able to get your disabled parking badge,’ said another. I should not whinge. After all, Parkinson’s is neither a death sentence nor particularly rare. In a decade, there might well be a cure for it.

And perhaps the most surprising aspect of my experience has been the constant kindness I have received from strangers. We are repeatedly told by much of the media that we live in an increasingly cruel society, whose snarling selfishness is epitomised by Tory cuts, rampant racism, soaring homelessness, Brexit divisions and widespread greed. Hostility towards the disabled and other minorities is apparently endemic in this new climate of fear, reflected in the growth of so-called ‘hate’ incidents. Last month, amid fiercely disputed claims that the Duchess of Sussex left the royal family because of the racial hostility she had to endure, Sir Philip Pullman said he was appalled at ‘how disgusting this nation is’ and ‘what a foul country’ it had become.

But my own life, since I became disabled, tells a very different story from this tale of brutality and bigotry. At every turn, I have been accorded benevolence. People have helped me with my coat, lifted my bags, held doors open, and asked me if I need assistance. Last week, on the long train journey home to Margate from London, another passenger saw me hobbling down the overcrowded carriage and gave up his seat, even though his generosity meant that he had to stand for more than an hour. On my occasional forays on to the London Underground, people have always ensured that I have a seat; this in a city that is meant to be home of atomised indifference to others.

In a petrol station in Kent the other day, I was shaking like a leaf near the toilets when another customer asked if I was all right.
I reassured him that my trembling predicament looked worse than it was. Not long afterwards, when I was limping towards the coin-operated meter in a Margate car park, a motorist drove up to me, leapt out of his vehicle and handed me his ticket, which still had plenty of time on it before its expiration.

In a shop in my home village, I clumsily spilt my change all over the floor, only for an assistant to come from behind her counter and pick up the coins. At the local cinema, when I dropped a bag of sweets in the lobby, a teenager rushed out from the queue to retrieve it for me. For me, the reaction to my condition is a better barometer of our nation’s spirit than any number of handwringing editorials in the media.

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Leo McKinstry’s latest book, Attlee and Churchill, is published by Atlantic.

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