/ 8 October 1999

A war correspondent’s private battle

The news that Dudley Moore has a form of Parkinson’s disease has focused fresh attention on the illness. Here David Beresford, a veteran South African correspondent and an associate editor of the Mail & Guardian, gives an extraordinary account of his battle with the disease – and how it has given him access to a different kind of front line

In a perverse kind of a way there is something fitting about Dudley Moore getting Parkinson’s disease, or at least a variant of it.

We do, after all, live in a world that has seen Superman, in the person of Christopher Reeve, rendered a quadriplegic and a quadriplegic, in the person of Stephen Hawking, rendered Superman. So it is somehow par for the course to have the Cosmic Jester play silly buggers by visiting Parkinson’s on one of the funniest men of our time.

Parkinson’s has been made famous by latter-day images of Mohammed Ali shuffling in what some might see as an obscene parody of the “butterfly” and “bee” movements which were his earlier glory.

The symptoms may also be seen in United States Attorney General Janet Reno as she battles to keep her arm from shaking during interviews and press conferences. Or in Billy Graham, Johnny Cash, Michael J Fox or, for that matter, Adolf Hitler, who is also said to have had Parkinson’s Disease.

The Hitler bit I am not certain about, to tell the truth, tending to throw it in for fear that the rest of the gallery suggests I find virtue in the disease. I suspect the claim may have been another effort on the part of the “black” propagandists – the “bodyguard of lies”, as Winston Churchill so quaintly described them, whose attendance is now so essential to the conduct of war.

The conduct of war is familiar to me because I am a former war correspondent. Admittedly the real wars I attended were not recognised as such by the military authorities. “A conjugation of assassins” was the diplomatic way in which one English judge in my time was driven to characterise the Irish conflict, in his attempts to accommodate the government’s insistence that no state of war existed in Northern Ireland with the contrary sounds of exploding bombs. White South Africa similarly tied itself into knots in its efforts to avoid giving combatant status to the African National Congress.

In fact the only “war” the authorities would acknowledge my attending was the imbroglio in the Gulf, in 1991, which I prefer to describe as a virtual reality event.

But it was during the latter episode that my personal war began, although I did not recognise it at the time. It started while I was sitting in the back of a Land Cruiser, scribbling a story on the liberation of Kuwait as we hurried across the sands to the telephones of Saudi Arabia and London, when I exclaimed half to myself, half to my companions: “That’s strange, my handwriting’s gone funny.”

The name of Parkinson’s was put to it a year later at the National Hospital for Nervous Diseases, Queen Square, London.

That year was a trying one. In the face of unexplained ailments one falls easy victim to quackery, of course, including the New Age therapists who ambushed me on the anxious path to diagnosis.

One was an old woman in her late 60s who was recommended as a masseur. She quickly had me stripped down to my boxer shorts and pegged out cruciform in the converted garage that was her “clinic” behind her home in Johannesburg. My knees, ankles and elbows were bristling with acupuncture needles and she had neatly planted four large crystals – one each on the palms of my up-turned hands, one in the middle of my forehead and one on my bellybutton.

“Now say ‘ummmm’ while I go and make myself a cuppa tea,” she said, tottering out the door.

“Ummmmm,” said the war correspondent hopelessly.

Another New Ager was a reflexologist in Johannesburg’s luxurious northern suburbs. The high security gate guarding the driveway rumbled shut behind me. She led me shyly into her husband’s sumptuous study. After we had stood in mute tribute before a picture of the two of them posing next to their racing bikes – testament to their burgeoning good health – she ushered me to her husband’s chair, inviting me to bare my feet as she disappeared into the kitchen.

“David,” my mother once said thoughtfully while inspecting my feet as a child, “when you grow up, perhaps it would be better if you do not let women see your toes.”

Reluctantly I took off my shoes and socks as my therapist staggered in with a bucket.

“Nice?” she inquired, softly stroking the soles of my feet in the warm water.

“Mmm, but does it work?” I asked.

“Must do,” she said looking up at me solemnly. “Nobody has ever come back.”

I glumly contemplated my toes.

The “qualified” doctors were more alarming. Like the one who, abandoning a medical diagnosis, put an arm of overt sympathy around my shoulders as he led me to the door.

“I had another patient who suffered what you have got,” he declared, with a confiding air. “He’s a company director. There was nothing wrong with him, until you sat him down at a table, put his cheque book in front of him and gave him a pen. At the moment he was about to start writing, as pen was about to touch paper, his hand would leap up into the air,” the doctor declared, giving emphasis to the description by waving at the ceiling. With a clap on my back and a chuckle he closed the door behind me.

The correct diagnosis was finally delivered by Professor David Marsden in London. I can still remember the pause and inquisitive look he gave me after he pronounced sentence: “I’m sorry, it is Parkinson’s.”

I was a trifle bewildered by the inquisitive look; after all, I had trekked across the world to get answers, not questions. Feeling impelled, however, to fill the expectant silence I groped in my mind to find something to say and could only come up with another question. “Will it affect my sex life?”

He gave a half nod, as if in recognition of something, followed by a look of puzzlement as the import of my question dawned on him. “Sex life? No, I don’t think so. Why should it?”

It was only then that I recognised that half nod. I had read about it, but never seen it: the moment a doctor gives a patient the Bad News – usually cancer – and diagnoses, or rather categorises, one by response. What did his nod confirm me as? A hysteric? A stoic? Or a sex maniac, on second thought?

“No, I expected it,” I mumbled in embarrassed explanation. “The Parkinson’s I mean.”

As I left I felt I was failing to do justice to a monumental moment in my life, so I stopped off at the first pub I came across leaving Queen Square and, leaning against the counter with the battle-weary air of a war correspondent, ordered a double whisky.

A few years later Marsden died. He was a famous man in the world of medicine and all the heavyweight dailies in London ran a big obituary.

The tribute in The Independent recorded a story told by his friends that one night he “danced the samba with Dolly Parton in Rio only four hours before his keynote morning lecture on basal ganglia disease”. The writer said that, whatever the truth of the story, it reflected the belief of colleagues that “he had the physical stamina and the intellectual prowess to do both brilliantly”.

He died of “unsuspected congenital cardiac anomaly”. So presumably he never heard sentence pronounced.

It is a strange disease, Parkinson’s. The symptoms vary hugely by way of uncontrolled shaking and rigidity of the limbs. In my case my walk is reduced to a senile shuffle; I have been robbed of the physical ability to write – making do with one-finger stabs at the keyboard – and I am beginning to have difficulty speaking, slurring my words. On occasion I freeze into near immobility when my companion Ellen has to calm me down as I tremble on the edge of panic.

The problem has been identified with the progressive deterioration of a small group of brain cells. The causes are not known – theories ranging from trauma to viruses. Symptomatic treatment is available with a “miracle” drug, Levadopa, which turns into a nightmare with time – after about five to 10 years – triggering wild gyrations of the limbs. About 30% of people with it sign off into dementia. Dudley Moore’s variant, progressive supranuclear palsy, is a lot more vicious, usually leading to memory loss and dementia and killing within five to seven years.

A friend of mine, an Africa correspondent, also has Parkinson’s. One night we were having dinner together in Johannesburg.

“You know, the strange thing is that if a guy came up to me with a pill that was a guaranteed cure to Parkinson’s, I would take it,” I said uncertainly, “but I would hesitate for a moment before taking it.”

He grinned, a broad smile almost of relief: “I’ve often thought exactly the same, but I haven’t dared tell anyone.”

It is a thought which has worried and intrigued me a lot. Certainly Parkinson’s gives one unusual insights. Take Levadopa, for example. It is an extraordinary drug, at least in its effect. It is like Popeye’s spinach or Asterix’s magic potion: one moment I’m a trembling immobile wreck and the next – pow! – I’m striding off. The transformation can happen, literally, in mid-stride (or mid-shuffle). I’m allowed enough of the drug to give me about eight to 10 hours of mobility. But there is a price to be paid: after an hour or two I’m hit by such an overwhelming lethargy that I am capable of falling asleep (and I have) in mid-conversation at the dinner table.

One of the interesting things about all this is that it means I occupy two worlds in one day; I experience the world of the aged (but with the acuity of a younger mind) and then a form of rebirth. It gives one quite an insight into what it is like to be old; suffering, for example, the slightly patronising tone of voice often used, by men in particular, when dealing with someone who is “past it” – a cynic might say who is no longer a rival in terms of the pursuit of limited resources.

It can be fun to go to a party, to spend half the evening tolerating such patronisation from a fellow guest – your mind working as acutely as ever behind the “old man” facade – and then, after taking the pill and feeling it “kick in”, bound to your feet, pound him on the back and bellow: “Well, where’s the action, mate!”

The look of bewilderment! Oh joy! … until you fall asleep with your face in the soup.

And the misunderstanding of the well- intentioned! How often the story has returned to mind, told to me years ago by a friend in Ireland with a deaf sister. The sister was going to catch the British Airways flight from Belfast to London. Concerned that there might be an emergency on board the flight and that the cabin staff might not appreciate that her sister could not hear them, my friend phoned the airline to explain the problem. She was assured that they would take care of it. Sure enough, when they arrived at the airport there was a British Airways representative waiting for them … with a wheelchair.

But those are in a way superficialities, offered as I nervously circle in my mind the real point which I want to address. I hesitate for fear of being misunderstood, of it being taken as a post facto rationalisation of a personal tragedy, the pleading of a “victim” for the charity of respect.

I was first alerted to it, I think, by a throwaway line in a newspaper profile of Christopher Reeve in which an activist for the disabled was quoted as saying that “the problem” with Reeve “is that he wants a cure”. In the apparent paradox I was startled to hear the echoes of “black consciousness” and liberation theology.

I heard it again in an observation by a friend of Stephen Hawking that he thought the Cambridge genius had been forced by his disability to develop conceptual tools which had given him a new line of attack on mathematical problems.

I think I have sensed it in political prisoners who have been through long terms of solitary confinement or torture.

I saw it when a brilliant and beautiful artist swept aside the gleaming wave of black hair covering part of her lovely face to expose a huge, livid birthmark. Recounting the social ostracism she had suffered as a child, because of her “disfigurement”, she explained that she had eschewed modern laser treatment to get rid of it “because it is my badge of empowerment”.

It is a question of perspective, really – a perspective of one’s surroundings and above all of oneself shorn of pretence, particularly as regards one’s own mortality. It is an empowerment which found its most powerful expression recently, in my profession, in the farewell testament of Ruth Picardie. I like to think of this different perspective in terms of “another country” to which I, as a foreign correspondent, have been granted some access by virtue of an unexpected visa.

There are high hopes at the moment for a better treatment, if not cure for Parkinson’s, many of them based on the recent, dramatic breakthroughs in cloning, genetic manipulation, neural cell regeneration and embryo transplants. But these techniques offer far more than a way of dealing with this one disease. They open a possible road to some form of immortality which would represent a rebellion against the given order of life of near-Promethean proportions.

I am told the latest prediction by the soothsayers who nowadays pass themselves off as futurologists is that consciousness will be immortal by the year 2090 – presumably because the brain will either be endlessly repairable or our memory banks duplicable and therefore transferable.

I have a small piece of hardware about the size of a credit card, a PCMCIA memory flash card, that I can slot into most computers. It contains all my most important data – articles, scripts, current correspondence, ideas, diary, address book – and I can carry it around in my pocket. Which leaves me wondering whose pocket will my grandson be in?

But while I recognise the existence of such fears – which have found expression in the popular backlash against genetically manipulated foods and the British government’s recent capitulation to pressure by extending the ban on embryo experiments – they boil down to the prejudices of the fundamentalist lobby which, sooner or later, will fall to demands for human progress.

We are like hatchlings trying to break out of an egg. If there were a superior form of life the view would be that of a mother hen watching a chick pecking at the shell – desperately trying to get out of that claustrophobic little world. Our scientists are the hard beak and our research breakthroughs the holes gradually appearing and widening as they coalesce. Waiting outside to greet us is surely a new reality.

“My body isn’t a temple,” says a postcard Ellen has posted up in my study. “It’s an entertainment park.” Both are perspectives we will leave in time.

But if it is the road of progress, it is one which is likely to be bitterly contested. And as a one-time war correspondent, I sense with some excitement the scent of battle in the air.

As it transpires I have found myself in a privileged position to witness it, within sight of the front lines. If I can only keep control of my typing finger … or avoid falling asleep with my face in the soup.