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The Scotsman Newspaper dedicated page
Jinky: a hero remembered
LAST week, at the family home in Uddingston, Jimmy Johnstone received bad news. For the past four years the man voted Celtic's greatest-ever player, a Lisbon Lion who in 1967 was part of the first British side to hold aloft the European Cup, had faced a challenge greater and more exhausting than cracking any defence he faced on the football fields of Scotland and Europe.
As a sufferer of motor neurone disease, a rare and fatal disorder which erodes the peripheral nerves that link the brain to the muscles, he was already living in extra time. The average life-span after diagnosis is between two and five years and, for the man whom millions of football supporters worshipped as 'Jinky', time was running out fast.
Hope, in Johnstone's eyes, was a new drug called Copaxone, which had been used in clinical trials to treat MND sufferers in the US with some success, but which, unfortunately, had not yet been used in trials or licensed in Britain. Undeterred, the former player, who had fearlessly walked along the high crash barriers that encircled Parkhead as a means of improving his agility, applied to the Southern General Hospital in Glasgow to test the drug.
When he was informed last week that the hospital had refused on "ethical grounds", Johnstone was described by his close friend Ian Henderson as feeling "devastated". We cannot yet know if being allowed to trial the drug would have prolonged his life, but what is known is that Johnstone's last four years as a MND sufferer were as determined and as bereft of self-pity as those of his sporting career.
Yesterday politicians and sporting personalities paid tribute. Jack McConnell, the First Minister, said: "Jimmy Johnstone was an inspirational footballer, a real Scottish hero, who always played with pride and passion."
It was a sentiment shared by Professor Ian Wilmut of the Roslin Institute, which Johnstone supported for its research into MND.
He said yesterday: "I am very sorry to hear of the death of Jimmy Johnstone. I offer my sympathy to his family. Jimmy's courage in facing his illness was an inspiration to us all. We are as determined as ever to carry on our research into motor neurone disease, as Jimmy always encouraged us to."
As a child Johnstone's love of football meant arriving at St Columba's Primary school in Uddingston early to squeeze in an extra game before the bell. His natural ability and prodigious practice saw him sign for Celtic at the age of 13, and it was with the Parkhead club that he enjoyed the highlight of his career, defeating Inter Milan 2-1 in the European Cup Final in Portugal in 1967.
After earning 23 caps for Scotland he travelled to America to play for the San Jose Earthquakes and later wore the strips of Sheffield United, Dundee, Shelbourne and Elgin City before he retired.
Like many footballers, he struggled to re-adjust to normal life and developed a drink problem which caused his family great pain: he was forever grateful that his wife, Agnes, stood by him as he struggled to put the cork back in the bottle. Regardless of hangovers, Johnstone kept himself fit and it was while completing one of his thrice-weekly workouts in the local park in the autumn of 2001 that he noticed that his arms were unusually weak. He contacted a doctor, who checked him out and feared the worst. When it was confirmed Johnstone had amyotrophic lateral sclerosis, the most common form of MND, he was determined not to succumb to it. His initial treatment was through Professor Ian Bone, a specialist in neurology at the Southern General Hospital, but the patronage of wealthy friends ensured he was also able to access treatment in America. Johnstone was never a rich man: in his day he was paid £50 a week with a £1,500 bonus for winning the European Cup – a pittance compared to the vast salaries afforded to the top players of today.
He twice visited the Beth Israel Medical Centre in Manhattan for check-ups, treatment and to become involved in a controlled trial of a drug that may prove beneficial to MND sufferers in the future. He also travelled to Turin in Italy, where some pioneering work on the condition was being carried out.
The consequences of his condition meant that he could no longer control his limbs sufficiently to shake hands with fans or sign autographs, just at the time when his popularity was about to re-explode. In 2002 he was voted the Greatest Ever Celt by the club's supporters, who chose him from among every single player since the club's formation in 1888. Then Jeff Healey, a film producer, made a tribute DVD to the player which involved Johnstone flying back to Lisbon to inspect the scene of his greatest success. The film, Lord of the Wing, was hugely successful and a copy was passed on to Sarah Fabergé, the jewellery designer and heiress to the legendary dynasty that produced bejewelled eggs for the Russian tsars. So impressed was she by Johnstone's courage that she offered to produce 19 eggs, one for each major championship he had won, to be auctioned in order to raise money for his treatment and research into MND. It was a unique honour, as he became the only living non-tsar to have a Fabergé egg designed for him.
The gold, silver and jewelled eggs, which when opened revealed a replica of one of the player's trophies, raised almost half a million pounds, with Willie Haughey, a former Celtic director and close friend of Johnstone, spending £47,000 to secure one. Among Johnstone's other celebrity supporters was Jim Kerr, the lead singer of Simple Minds who recorded a charity version of Dirty Old Town with Johnstone. The secret to Johnstone's grit and determination was, he said, his faith. "I still feel blessed," he said after his diagnosis. "I'm not feeling negative at all, because something tells me I've been given this illness for a reason. I'm going to fight it. They're searching for a cure, and I believe in them. I have faith, and I believe the big man up there has given me this for a purpose, so I'm going to get on wi' it."
While accepting his condition he did not accept the slow progress of MND research in Britain. He told one interviewer: "The pharmaceutical companies are hampering the research, the bastards, and the British government aren't doing enough … but there's progress being made."
Professor Sheila McLean, professor of medical law at Glasgow University, questions the wisdom of denying Johnstone access to experimental drugs such as Copaxone: "You have to ask what would you be protecting people from by denying them these treatments. We allow people to make the decision that they do not want life-saving treatment, which is the ultimate decision, many would say.We should not be so paternalistic that we not allow people to make their own decision. In extreme circumstances we should be reluctant to deny people what they may see as their last hope."
Dr Mark Bailey, from the Institute of Biomedical and Life Sciences at the University of Glasgow, adds: "It is not unlikely that patients' hopes will be raised if they hear of a potential treatment and they are facing an uncertain future with their own health. Sometimes the doctor's position will be that they need to keep up their patient's morale and quality of life, and sometimes they will let their patients take part in these experimental therapies. But it is very, very rarely that these therapies come up with the goods."
Dr Brian Dickie, director of research at the Motor Neurone Disease Association, says the treatment was unlikely to have been successful, however: "You can understand why patients will try to get hold of anything that looks like it may have a potential benefit to them. But just because a drug is wonderful in treating one disease, such as MS, does not mean it will be helpful for MND."
It was perhaps fitting that Johnstone should pass away, surrounded by his wife and children, where he was born and raised, in the Viewpark area of Uddingston. As he said three years before he died: "Viewpark, I love the place. I wish they could freeze that time, that era and let us live in it. The field of dreams. From the grounds of St Columba's Church I can see my life stretching out before me. I can see the house at 647 Old Edinburgh Road where I was born, and I'm standing in the yard of the chapel in which I was baptised. Right in front of me is the primary school I attended, and two miles on is Birkenshaw, where I met the love of my life, Agnes. Ten miles on again is Celtic Park – Paradise – where it all happened for me."
Motor Neurone Disease AROUND 5,000 people in the UK, including 250 in Scotland, are living with the devastating consequences of motor neurone disease (MND). The cause of MND is unknown and there is currently no cure, meaning patients see the disease progress rapidly, robbing them of their ability to walk, talk or feed themselves.
But their intellect and senses remain unaffected – a fact which many say makes the condition even more cruel. They can still think and feel, but have difficulty communicating because their muscles refuse to work.
MND is the name given to a group of related diseases that affect the nerve cells in the brain and spinal cord. The cells gradually die and the muscles stop working. There is currently only one proven treatment for MND: a drug called Rilutek, which can give patients an extra three to six months of life.
Life expectancy for most patients is two to five years after diagnosis, with around half dying within 14 months. But there are exceptional cases, such as the globally renowned scientist Professor Stephen Hawking, who has survived with MND for more than 35 years.
Many are hoping that new drugs, or even experimental treatments involving stem cells, could offer new hope. Early symptoms of the disease can be slight, meaning some patients wait up to 18 months to be diagnosed, simply because there is no easy test.
The early signs include clumsiness, mild weakness and slurred speech. But the disease affects each sufferer in different ways, varying enormously from person to person.
One sufferer who came to international attention was Diane Pretty. She fought a long-running legal battle for the right to be helped to die by her husband without fear of his being prosecuted. She lost her case and died from the disease in 2002. Famous people who have died with MND include the actor David Niven and the footballers Don Revie and Willie Maddren.
Kirstine Knox, the chief executive of the MND Association, says: "MND is a cruel and devastating condition, and kills three people every day in the UK."