'You will notice I am limping . . .'

Wesley Carr, the Dean of Westminster, talks to
 Cassandra Jardine about the shadow Parkinson's disease has cast over
his busy life
IN September 1997, Wesley Carr, Dean of Westminster, led the Abbey's
clergy at the funeral of Diana, Princess of Wales with great dignity. "The
most memorable part," he recalls, "was the extraordinary silence as we
paused by the West Door."

Wesley Carr: 'If you are a public figure, people inevitably speculate and
it is best to be open The worst thing is the effect on my handwriting'
Should there be another royal funeral, the task will fall to him once again.
If so, shrewd observers will notice a change: the Dean limps slightly,
because he has Parkinson's disease. In 1997, he was keeping quiet about
it, but since then, the disease has progressed to a point where he no
longers feels that is possible. "If you are a public figure, people
inevitably speculate and it is best to be open," he says.
It amazes him that the Pope left everyone guessing about his own
condition until recently; such reserve reinforces the dire image of the
disease. Such is its reputation that, when Carr heard the diagnosis in
early 1997, he broke down. "My wife, Natalie, was with me and we both
went into shock. For the next 48 hours I was reeling. I cried several times
a day and suffered from terrible self-doubt."
Dr Carr is not given to wallowing in emotion. A classicist, theologian and psychologist by training, his manner is down to earth and rational. In bearing, he is almost military, as befits the child of two Salvation Army o
fficers, and "robust" is a word he often uses. So to discover, when he had just reached the pinnacle of his career, that he was on course to become a physical wreck was the hardest blow of his life.
"It was more difficult than learning that my wife and I could not have children - we had suspected that when we married and could support each other. With Parkinson's, although my wife observes what is happening, I am the
 one having the feelings; it isn't shared."
As Dean of Westminster, Carr governs (with the Chapter, a mini-parliament) a Benedictine abbey complex of immense historical and artistic importance. Balancing the interests of tourism, sanctity and tradition - while keep
ing enough money coming in to maintain the royal tombs, fan vaults, paintings, statues and a staff of 150 - is a gargantuan task, as Carr knew when he accepted the job in 1996.
"Had I known about the Parkinson's, I would still have come, but I might have paused. There were signs: that summer, my right leg was strangely stiff when we went on a walking holiday. But it was only three weeks after I
started at Westminster that my wife noticed my right arm wasn't moving as I walked."
His doctor immediately referred him to the Institute of Neurology. "They must have thought it was a brain tumour for, when I was given the test results, the specialist said: 'It is serious, but not that serious.' At the t
ime, I had little idea what Parkinson's meant," says Carr.
He soon learnt that the disease occurs when the nerve cells in the brain's substantia nigra have almost ceased to produce and store dopamine, the chemical messenger that co-ordinates the body's movements. A tremor is the
most common symptom, but a third of patients start, like Carr, by experiencing stiffness. At 57, he found he was relatively young among this country's 120,000 sufferers from Parkinsonism - a disease for which there is no
explanation, no remission and no cure.
Carr started on tiny doses of drugs that mimic dopamine, which can work well at first but become less effective over time. The speed of degeneration varies, but all patients find that over, perhaps, a decade, the problems
 that began on one side will spread - causing general debilitation.
Three years ago, Carr was far from that stage so he told only a few friends unconnected with the abbey and carried on working in a job that turned out to be even more demanding than he had predicted. His annus horribilis
was 1998; that spring, he suspended Martin Neary, the abbey's organist, for taking money for handling choir bookings and recording contracts. Dr Neary's supporters, among them MPs Frank Field, John Gummer and Sir Edward H
eath, went on the attack. Carr found himself described publicly as a "bully" and a "bossy, over-bearing prat".
As the row continued, a ragbag of further grievances emerged: he was accused of inhumanely sacking guides over the age of 75, of exploiting Diana's funeral by selling off abbey chairs for £3,000 each, of tactless innovati
on and of grumpiness towards the neighbouring Westminster School boys. Even Lord Jauncey, who adjudicated in Carr's favour, gave the Dean and Chapter "gamma minus" for their handling of the Neary dispute.
Considering that Carr works as a consultant on organisational psychology, in and outside the church, it was a damning catalogue. "What you are accused of and what you are are two different things," he responds, unruffled.
 "We operated according to employment law, the Chapter was solid throughout and our solicitor said publicly that he should be the one known as Mr Gamma Minus."
He dismisses the other charges with equal ease. "The chairs, for instance, were sold to a company - how it advertised them and what it charged were nothing to do with us."
Sufferers from Parkinson's are advised to keep calm. Carr, who was previously a canon in Chelmsford Cathedral and Dean of Bristol, has tackled tough jobs before - "though this is much the worst". He believes he thrives on
 stress but, by mid-1999, he was having to increase his medication and the time had come, he felt, to make his disease public. So, that September, ensconced with the Chapter in the Jerusalem Chamber where Henry IV died, h
e announced that he wanted to take "an item of personal business". "They were horrified," he says.
At the same juncture, since Westminster is a Royal Peculiar, directly responsible to the monarch, he told the Queen's private secretary, Sir Robert Janvrin. Finally, last summer, he assembled the staff of the abbey. "Some
 of you will have noticed I am limping" he began, and he was touched when he learnt that, despite - or possibly because of - all the attacks he had endured, some of them were in tears.
As yet, Carr's Parkinsonism is scarcely noticeable. His limp could be mistaken for hip trouble, his words are not slurred, nor does his face have the expressionless quality that comes with loss of muscle control. "The wor
st thing is the effect on my handwriting. My hand won't do what my brain intends," he says, producing a sample of minute, spidery script. "But I can always use a keyboard."
Symptom-watching, he knows, is a great mistake and liable to induce
depression. He wants to remain capable of doing the job he loves for at
least another five years. Although he does get very tired, he has not, so
far, made any special effort to protect his health. Walking around the
abbey and its courtyards, he finds, provides ample exercise and, as it is
nearly pre-lunch drinks time, he points out: "Benedictines have always
been in favour of red wine and I enjoy it as much as ever."
Consolation comes from the routine of the liturgical day: Carr has long
pondered whether faith helps people to face disease and death. "It
neither helps nor hinders," he has concluded. "What does help is being
part of something larger which gives you support. Faith becomes
something very practical.
"None of us chooses to be born and, as babies, we are completely
dependent. Old age and illness I now see as a process of becoming
dependent again, a preparation for eternity when we are entirely
dependent on God."

http://www.telegraph.co.uk:80/et?ac=000140326706927&rtmo=0x222Jsq&
atmo=rrrrrrrq&pg=/et/01/2/13/thsick13.html

************************