‘I’d rather watch Porridge than try yoga!’: LEO MCKINSTRY reveals he wept in the street when he was diagnosed with Parkinson’s disease aged just 55 but insists he refuses to play the victim
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Media coverage of poor health is littered with defiant military metaphors. Individual battles are fought against illness; wars are launched against diseases; medicines are weaponised and locked on target.
‘We are undefeatable,’ declares one TV advert for a campaign run by the charity Activity Alliance. Use of martial language is particularly common in the coronavirus pandemic as ministers pledge to combat the lethal disease and Boris Johnson was hailed as ‘a fighter’ during his ordeal in intensive care.
Well, I don’t feel very heroic these days as I shuffle around with my cane or sit slumped at my desk, my legs aching and shaking.
I don’t feel very heroic these days as I shuffle around with my cane or sit slumped at my desk, my legs aching and shaking, writes LEO MCKINSTRY
In place of courage, I am gripped by fatigue and immobility. If military imagery is to be used, I face a relentless slog in hostile terrain rather than a glorious charge towards victory. The best I can realistically hope for in my predicament is a kind of temporary armistice.
This experience reflects the fact I have developed Parkinson’s disease, the degenerative condition that impairs the functioning of the body.
I cannot deny that the onset of the condition has been a heavy blow, even though I try not to let it dominate my life.
The eccentric singer Ozzy Osbourne, who has also been diagnosed with the disease, said recently, in his inimitable Brummie style, that it has ‘knocked the s**t’ out of him’. I feel much the same way.
I am only 57, but in several respects I am like an old man. Stooped forward, I struggle to walk any distance without a stick, while my foot-dragging gait resembles that of a zombie extra in a Seventies horror movie.
I regularly feel exhausted and have to take long naps during the day, yet at night I am often seized by sleeplessness, partly because of pains in my limbs and neck. Moments of stress can leave me shaking, though at other times, I am as inert as a stone on Easter Island, complete with a frozen expression on my face.
Because of the rigidity in my back and legs, getting dressed is a lengthy process, especially where trousers and socks are involved.
Beautiful, kind and funny, my wife Elizabeth (pictured together) has been the most wonderful support throughout this saga, supplying all the positivity I lack. Her patience has been boundless, her devotion unceasing, writes LEO MCKINSTRY
I should not complain too vociferously at a time when so many lives are being taken and families wrecked by Covid-19. With the death toll soaring, the unprecedented emergency has put my own problems into perspective.
Moreover, I am aware that, apart from the coronavirus, there are millions of people in Britain who are suffering far worse health, especially with terminal cancer and severe disabilities. Nevertheless, Parkinson’s has cast a long shadow over my life.
The journey onto this forbidding territory began about 18 months ago, when I first noticed a persistent tremor in my left leg while sitting at my desk.
Gradually this tremor spread to my other limbs, accompanied by extreme stiffness, which hindered even routine tasks such as rising from a chair.
For most of my life I have been quite even-tempered, but I began to succumb to waves of anxiety, fuelled by irrational fears such as my house burning down, that I would fall into debt or that Jeremy Corbyn would become Prime Minister. In addition, over the first six months of 2019, my handwriting went into decline.
Through internet searches, I soon learnt that all these traits were symptoms of Parkinson’s. But, unwilling to face this reality, I told myself I was suffering from a recurrence of sciatica, a back problem for which I had an operation in the mid-Eighties.
It was an act of self-deceit that entailed fruitless visits to osteopaths across Southern England. But by September last year, a year after my symptoms started, the problem was so bad I decided to see a back specialist.
As soon as I limped into his room in central London, my delusions were shattered.
‘I am afraid there’s no point in my examining your back. I am pretty certain you have Parkinson’s,’ he said in an authoritative but kindly manner.
I managed to remain phlegmatic at the time, helped by the freezing of my features (another symptom of Parkinson’s). But when I left and phoned my wife Elizabeth to give her the bad news, I started to cry. It must have been a pitiful sight, a grown man standing in the street with his hands trembling and tears rolling down his cheeks.
In my heart I had guessed this would probably be the diagnosis. Nevertheless, the bold pronouncement came as a shock.
Yet the collapse did not last long. I soon managed to pull myself together, attend a meeting with my publisher, then commute back to our home near Margate.
The back specialist arranged for me to see (privately) a neurologist, Professor Michael Hanna, within days, who conducted tests including brain scans.
Around 145,000 British people are estimated to Parkinson’s disease it, and every hour, two new cases are diagnosed (stock image)
In October, I visited him again to receive his verdict. He confirmed that I had Parkinson’s, which he explained is due to the death of brain cells that produce dopamine, a chemical messenger that regulates the body’s movements.
He said that without treatment, my decline would gather pace, further restricting my movements and making me vulnerable to falls. It was a bleak prospect. To counter the loss of this vital chemical, he suggested I begin taking a drug called ropinirole, which works by imitating the actions of dopamine.
I asked him about potential side-effects. With a suppressed twinkle, he warned that a few patients have been known to become sexually compulsive or to develop gambling addictions. It was a statement that alarmed rather than intrigued me, but I felt I had no alternative than to try the drug.
Despite my daily consumption of ropinirole since October, I did not transform into the Harvey Weinstein of Margate, nor did I ever feel any temptation to enter the local bookies.
Unfortunately, the medication did not have much impact on my health, apart from making me drowsy. After a few months, I was as stiff, shaky and slow as ever.
Professor Hanna advised that, in addition to ropinirole, I should take a drug called levodopa.
Unlike ropinirole, which only imitates the effect of dopamine, levodopa is converted by enzymes in the brain directly into dopamine and, therefore, if it works, actually replaces this vital chemical messenger. I am now up to 11 pills a day; eight levodopa and three ropinirole, though that is no great burden, as the side-effects amount to little more than some weariness.
There has yet to be a spectacular improvement, but I feel better than I did late last year: my mood swings have lessened and my tremors have reduced significantly.
But I am willing to try alternative remedies, to give me a further boost without taking yet more medication. Before lockdown, I visited a healer, Matthew Manning, at his clinic in Devon. Wise and sympathetic, he put me into a deeply relaxed state during meditation, as he laid his hands on me, their warmth coursing through my body and making my tremors cease completely for a time.
Given this impressive impact, I hope to have further sessions with him once lockdown is lifted.
Some friends have also pointed to research that suggests boxing, cycling and even table tennis can be beneficial for those with Parkinson’s — though, with my lumbering frame, the prospect of such vigorous activity is a little daunting.
And I draw the line at involvement with local Parkinson’s support groups, one of which boasts that it offers yoga and communal singing — that’s just not me.
There may also be tambourine playing involved. I’d rather remain static on the sofa watching Porridge on UK Gold.
As I consider my choices, I am trying to remain stoical, not least because I despise the modern fashion for wallowing in victimhood.
After all, though there is no cure for Parkinson’s, it is neither a death sentence nor particularly rare. Around 145,000 British people are estimated to have it, and every hour, two new cases are diagnosed. Many of those with the condition lead fulfilling, productive lives, as I intend.
As well as sustaining me with her love, Elizabeth (pictured together) carries out tasks that no wife should have to do for a middle-aged husband, such as putting on my socks and tying up my shoelaces, writes LEO MCKINSTRY
I am very lucky in that my work as an author does not involve physical labour; and, though my handwriting has declined, I am still able to use a computer, as well as drive. Indeed, at the very moment of my diagnosis last autumn, I had my latest book published, a dual biography of Winston Churchill and Clement Attlee.
I am often told a positive outlook is essential to coping with this condition. As an Ulsterman, such optimism does not always come easily. Yet I am becoming aware of some of the advantages of Parkinson’s. I now have a permanent dispensation to behave as a couch potato, though as my wife says: ‘You were never exactly an Olympic athlete.’
I am absolved from all chores, from cooking to cleaning. In the mornings, I can lie in late on the grounds that I ‘need a rest’.
Before the Covid-19 lockdown, while my wife did the supermarket shop, I often had a gentle snooze in the car. When my prescription needed picking up from the pharmacy, she went while I read the paper and poured myself another mug of tea.
I sometimes say to her: ‘I could get used to this.’ But that just illustrates what a lucky man I am in my marriage to Elizabeth. Beautiful, kind and funny, she has been the most wonderful support throughout this saga, supplying all the positivity I lack. Her patience has been boundless, her devotion unceasing.
As well as sustaining me with her love, she carries out tasks that no wife should have to do for a middle-aged husband, such as putting on my socks and tying up my shoelaces. This September we celebrate our 25th wedding anniversary, and no husband was ever more fortunate.
I have also been buoyed by the generosity of friends and family, including my two brothers and my sister-in-law. Gallows humour helps, as when one colleague said to me: ‘At least you’ll be able to get your blue parking badge now.’
Soon after my diagnosis, another asked me, in reference to my fondness for strong Danish beer: ‘Didn’t you realise that Carlsberg Special is not a health supplement?’
Perhaps even more surprising has been the kindness people have shown me as I hobble my clumsy, restricted way through life.
During the pandemic, I have had to isolate myself because of my condition, but I have been helped by the local town council, where volunteers deliver groceries or medication for vulnerable people.
In the same manner, one kindly neighbour went to the butcher’s for me, another to the off-licence for that essential item: Carlsberg beer. And that generosity matches my wider experience.
We hear so much about the cruelty and selfishness of modern British society, but I have felt the exact opposite in recent months. My vulnerability seems to bring out a spirit of benevolence.
Travelling on trains and the London Underground before the lockdown, seats were given up for me. In buildings, doors were opened and lifts summoned. When I dropped my change in a shop recently, the assistant rushed from behind her counter to pick it up.
In the same way, I have only praise for the medical profession. From Professor Hanna to my GP, from pharmacists to nursing assistants, I have been shown expertise mixed with compassion.
The Covid-19 crisis has become the NHS’s shining hour, inspiring deserved adulation. Yet in my experience, even before the emergency it functioned well and maintained its humane principles. Indeed, experts tell me that, because of the standards of care, there is no better country in the world to have Parkinson’s than Britain.
I don’t know what the future will hold for me. Professor Hanna says that any benefits of the drugs are likely to wear off in ten years as the disease accelerates, leaving me severely disabled.
On the other hand, given the remarkable advances in medical technology, there may be a cure for Parkinson’s by then — so all hope for the long term is not yet lost.
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