The shocking truth of how a sports-obsessed lawyer was diagnosed with Parkinson's at 36
By JULIA LLEWELLYN SMITH
Last updated at 2:04 AM on 26th September 2010
It was a normal morning for Alex Flynn. The lawyer, then 36, had just arrived in his office in Cambridge and was going through paperwork.
But as he reached for his cup of coffee, his right hand began to tremble uncontrollably.
‘I thought my blood sugar must be low, or I must have been spending too much time in the gym,’ Alex recalls of the incident in 2008.
Brave front: Alex Flynn and Aurelie on their wedding day
‘But later that day, it happened again. And it kept happening.’ At the time, Alex’s life seemed perfect.
Happily married and a father of two lively sons, he had a flourishing career. Every spare moment was packed with sporting activities, including judo, riding motorcycles and running marathons.
‘It didn’t occur to me that it could be anything serious,’ he says. ‘But the shaking was embarrassing.
I told my wife Aurélie and she said, “I know you, you’re just overdoing it.” But when a colleague noticed it, I decided to do something.’
After three more months of shaking, Alex was referred to a neurologist, who thought he might either have Parkinson’s disease or Wilson’s, a curable disease caused by too much copper in the body.
For a firm diagnosis, Alex was referred to Parkinson’s specialist Dr Gordon Lennox at Addenbrooke’s Hospital, Cambridge.
He greeted Alex with the words: ‘You have got a classic case of Parkinson’s.’
Affecting around 120,000 people in the UK, Parkinson’s is a progressive neurological disease.
It occurs when the brain stops producing dopamine, the chemical that controls body movements.
Famous sufferers include actor Michael J. Fox and boxer Muhammad Ali.
Though Alex had just started trembling, at least 80 per cent of his dopamine-producing cells had already died.
This means the disease was likely to have begun years earlier as serious movement problems occur only when numbers of these cells drop below 20 per cent of normal levels.
Even before this, experts can spot it by stiffness in the hands and gait.
Parkinson’s sufferers’ movements become slower and more rigid. Each case progresses differently, but many individuals end up unable to walk, talk or care for themselves, as their medication stops being effective.
‘The best description I’ve heard is that it’s like encasing your body in cement,’ Alex says.
Other common symptoms include extreme fatigue and depression. Speech often becomes stumbling and faces assume a mask-like expression as the features no longer move.
As swallowing becomes harder many drool and older sufferers are often affected with dementia and osteoporosis.
Although Parkinson’s does not kill, many sufferers die prematurely of complications such as pneumonia.
While the disease affects mainly people aged 60 or over, one in 20 sufferers is diagnosed before the age of 40.
Experts are unsure what triggers the disease, which for unknown reasons affects twice as many men as women, but agree that it is not usually hereditary.
Telling his sons (from a previous relationship) Max, ten, and Louis, nine, he had an incurable disease was Alex's toughest challenge
Alex’s future seemed to have been snatched away. ‘I was in shock,’ he recalls of the day of his diagnosis, at his home in Henley, Oxfordshire. ‘We left the clinic and Aurélie burst into tears.’
Two days later, to rule out Wilson’s, an ophthalmologist scanned his eyes for traces of copper.
‘When he said, “You have beautiful eyes,” my heart sank. ‘Even though Dr Lennox had said he would stake his reputation. Having good friends may halve the risk of developing dementia more than a decade later, writes Roger Dobson.
And new research shows that it is the quality rather than the quantity of relationships that count.
‘Rather than having a lot of social partners, what may be important is being surrounded by those with whom one experiences a genuine exchange,’ says Dr Helene Amieva, who led the research.
‘The number of people with whom one interacts may be less important than the quality of interactions with others.’
The research is based on a longrunning study of nearly 4,000 men and women who were asked about their relationships and other lifestyle factors and who were then followed to see who developed dementia.\
During the study, 461 people developed dementia, including 373 with Alzheimer’s, and the results show that those who had said they were very satisfied with their relationships had a 23 per cent lower risk of developing dementia from five to 15 years later.
The men and women were also asked about numbers in their networks – from below three to more than eight – but numbers were found to have no effect on risk.
The researchers, from the Université Victor-Segalen, Bordeaux, and the University of Michigan Centre on the Demography of Ageing, also found that those who felt they had received more support during their life than they had given, had a 55 per cent lower risk of dementia.
The researchers say maintaining social interactions is one of the best sources of mental stimulation, and that the findings need to be taken up by health professionals.
‘Our findings may lead to the recommendation that professionals working with the elderly should pay special attention to the quality and reciprocity of their social networks,’ says Dr Amieva.
‘They may also encourage the design of preventive strategies against dementia in which attempts to improve the quality of relationships of the elderly should also be targeted.’
Good friendships can keep dementia at bay on me having Parkinson’s, I had
still been hoping against hope I’d have Wilson’s, which could be dealt with by taking a pill every day.’
Afterwards, Alex became severely depressed. ‘I was in a black place for several months.
Nothing gave me any pleasure because as far as I was concerned,everything had finished. Aurélie was amazing, reassuring me that a cure would be found, but I
must have been a nightmare to live with.'
Two years after that diagnosis, he is now on a cocktail of medication– only his intense stare (Parkinson’s stops you blinking) and a faint trembling in his hand indicate that something is not quite right.
‘I may appear still but my body is continually moving on the minutest level,’ he says. ‘All the movement is very tiring, especially since shakes in my right arm wake me most nights for about 40 minutes.’
With no idea of how long he will remain mobile, he has decided to raise £1 million in sponsorship for The Cure Parkinson’s Trust, by walking, running or, should his condition deteriorate, crawling a combined distance of ten million metres (more than 6,000 miles) by 2014.
He is also planning to complete a series of triathlons, swim the Channel and take part in gruelling long-distance races.
‘It was tempting to wallow in my misery. But in the end, I thought, I have a great wife and two fantastic kids. What kind of role model would I be if I just sat back and accepted the disease as my lot?’
Alex met French-born Aurélie, 27, also a lawyer, nine years ago when he was working in Bordeaux. They married in 2006.
He says: ‘When I heard about the Parkinson’s, I did think, Why us? At first I told her to leave me, but she said, “I’m married to you, I said I would
stay with you and that’s what I will do.”
’Telling his sons (from a previous relationship) Max, ten, and Louis, nine, he had an incurable disease was Alex’s toughest challenge.
‘At first I shied away from it, but my mother convinced me they were old enough to know.
‘I told them Daddy has a disease, but they can’t catch it. After a while I might shake a bit and they’d laugh at me but I also reassured them there is medication and I believe a cure will be found.
‘They said, “That’s all right, we love you.” I was completely blown over.'
Alex can still drive but some days, when his medication is ineffective, he cannot go to work.
‘I work in a very stressful environment and stress makes my condition much
worse,’ he says. ‘My limbs start to do their own thing and I can’t control them. Socially, it can be very frustrating.
‘When I’m passing plates at dinner or pouring water from a jug, my arm can suddenly have a life of its own. If I am in a tough situation, I automatically sit on my hands.’
Despite this, Alex is embarking upon physical challenges. Some experts believe exercise produces a protein called GDNF, which has been found to repair the brain and may help with Parkinson’s.
‘Whether that’s right or not, the endorphins that exercise produces are proven to help with stress,’ says Alex. ‘If I run 50 miles, I’m not shaking at the end.’
However, each venture is becoming more of a struggle. Last month Alex completed Europe 135, a non-stop 135-mile race across the Alps. Just before
leaving, he had a seizure.
‘Medics took me to hospital and found my body temperature had dropped nearly three degrees below normal. Four days later I had to run the race on about two hours’ sleep, so again Aurélie was worried.
‘My days of being able to run a marathon are gone. The last few races I have completed I’ve had to partly walk.’
Neurologist Dr Roger Barker, of Addenbrooke’s Hospital, who sees Alex twice a year, says he doesn’t want him to overdo it.
‘Exercise produces endorphins, which enhance your mood, and if you’re in good
shape you’re more likely to feel good about yourself, which is important for Parkinson’s sufferers,’ he says.
‘But exercise also makes you tired and tiredness makes the symptoms worse.’
If Alex’s condition deteriorates he may undergo deep brain stimulation, where electrodes are introduced to the brain through two holes. This can reduce tremors for 15 years.
Aurélie admits: ‘It’s frightening. We know the Parkinson’s is going to impose considerable difficulties on our lives but we have no idea how or when.’
Alex is determined not to waste a second of whatever time remains. ‘I don’t take anything for granted any more, from picking up a coffee cup without spilling it, to simply being able to walk down the street,’ he says.
‘If I don’t achieve everything in my power when I still have those precious abilities, I’ll be full of regrets if I lose them. There’s so much good in my life – I want to celebrate that
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