Can technology unlock ex-footballer's condition?
There’s one photo from Gary Parkinson’s football career that has pride of place in his house.
Taken in 1994, it shows him holding the Division Two play-off trophy aloft at Wembley with his best mate David Eyres after their goals had secured a famous 2-1 win for Burnley against Stockport County.
Fast forward 25 years and the two pals, whose nicknames for each other are ‘Tweetie Pie’ and ‘Big Ears’, are continuing to reminisce about what was probably the greatest day of their careers in the kitchen of Parkinson’s immaculately tidy home in Bolton.
“It was the worst goal I’ve ever seen to win a game but probably the most important,” is how Eyres describes his former team-mate’s deflected strike.
For a split second it’s just like the old days but something is different. Parkinson – or Parky as he’s known in the game – suffered a life-changing stroke in 2010 that very nearly claimed his life.
Diagnosed with a very rare condition called locked-in syndrome, he’s unable to move or talk but is completely aware of what’s going on around him. He communicates by blinking his eyes and using a piece of eye-tracking technology called Tobii.
His devoted wife Deborah, who has been his childhood sweetheart since meeting in Middlesbrough at the age of 16, is hoping advances in technology may find the solution for the condition.
“Medical science is changing all the time,” says the mother-of-three. “Research is being done. Who knows whether it will be in Gary’s lifetime – but I believe there will be something out there. Gary has never given up on anything.” Her family’s life changed forever one Tuesday in September 2010.
Her husband was 42 at the time and working as a youth team coach at Blackpool Football Club with aspirations of one day being a manager.
Parkinson began his career as an apprentice at Everton in 1985 but was best known for his spells at Middlesbrough, Burnley, Preston North End and Blackpool, before a cruciate ligament injury forced him to retire in his early 30s.
“As a player there probably wasn’t a better striker of the ball with his right foot,” is how Eyres describes the defender.
Deborah recalls how her husband had been his normal self when he returned from Blackpool FC and the pair had enjoyed a glass of red wine each before going to bed.
“In the early hours of the morning Gary said he had a headache,” recalls his wife. “He asked for some painkillers. I went downstairs for a glass of water and by the time I got back upstairs I could see the coordination had gone from his face and his hands.”
He also struggled to open his eyes so at 6am she called for an ambulance.
“I didn’t suspect he’d had a stroke,” she says. “I thought he’d had a reaction to something.”
Parkinson was able to walk to the ambulance, which took him to Royal Bolton Hospital. Initially it was thought he only had an ear infection.
“He lost his feeling in his left side and that was when I knew it was something more serious,” says Deborah.
Deborah went home to pick up some possessions and check on her children as their son Luke, then 17, was looking after his younger sisters Chloe and Sophie.
By the time she returned to the hospital an hour later her husband’s condition had taken a dramatic turn for the worst.
“He’d been taken to intensive care and was induced into a coma and was on life support,” she says. “He was so gravely ill he was given last rites twice.”
It took three scans before he was diagnosed with having had a stroke – but the news got even worse. When he was taken off one of the machines, his body was completely unresponsive and he was found to have locked-in syndrome.
Locked-in syndrome is a rare neurological disorder which causes complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with the condition are conscious and awake, but can’t move or speak.
Deborah says the easiest way to describe locked-in syndrome is to imagine all the nerves are wires, travelling up the spine to the brain and then going off in different directions to control movement. The stroke damages the brainstem and prevents messages getting to the brain.
Her husband also has a tracheotomy to assist with his breathing and is fed through his stomach.
“We know people who have come out of locked-in syndrome,” says Deborah, although she accepts the odds aren’t encouraging. “If you look in the medical books for locked-in syndrome it says 2-3 months life expectancy. Here we are more than eight years later.”
In total Parkinson spent two years in hospital but was able to leave after his house was specially adapted.
“It was difficult for Gary to come to terms with,” admits his wife. “He worried about everybody else. He wanted everybody else to be happy.”
Deborah looks after her husband alongside a team of dedicated carers.
Gary communicates through blinking. “His eyes look up for a ‘yes’ and down for a ‘no’,” she says. “He will blink his eyes to indicate he wants to tell us something.” Gary builds up words, one letter at a time, by blinking a certain number of times to indicate each letter. “The only movement that that isn’t affected by your brain stem is your eye socket.”
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Parkinson, who is a keen horse racing fan, also uses a sophisticated piece of eye-tracking technology called Tobii.
“Gary uses a piece of equipment called a brain finger,” explains Deborah. “It’s a bit like a headband that straps on to his head and it had little probes and it can pick up muscle and facial movement.
“Gary will twitch his mouth and it will move the cursor on the screen. It’s amazing but Gary gets frustrated with it.”
Parkinson has a close network of former footballer friends who visit him, including Bernie Slaven, ex Everton and Manchester United manager David Moyes, Lee Turnbull, Eyres and current Blackburn manager Tony Mowbray.
Eyres, who calls his former team-mate ‘Tweetie Pie’ on account of his blond hair in his youth, is a regular and welcome visitor.
“Gary used to call me ‘Big Ears’,” he recalls. “As soon as somebody shouted ‘Big Ears’ I knew it was Parky.”
Despite their friendship, the two were ultra-competitive when they came up against each other later in their career playing for Oldham and Blackpool respectively.
“He was one of my mates and he said ‘I’m going to kick you Big Ears’,” recalls Eyres with a smile.
I ask Parkinson if it feels like being back in the changing room when his old Burnley team-mate turns up. His eyes look up to indicate yes. “Has David got any funnier?” I ask. Gary looks down to indicate ‘no’.
Of the stroke, Eyres says: “Gary has always been a fighter.”
Deborah says the football world couldn’t have been any nicer and praises the role of the Professional Footballers' Association (PFA) and especially its chief executive Gordon Taylor, who came to see her husband soon after his stroke. “They have been very supportive,” says Deborah. “Gordon sends a Christmas card to Gary every year.”
Against all the odds Parkinson recently celebrated his 50th birthday and likes spending time with his children Luke, who turns 26 on Thursday, Chloe, 22, and Sophie 15. Luke runs the Gary Parkinson Trust Twitter account @GaryParkyTrust.
Deborah is a remarkable person but is quick to downplay her selflessness. She says the ‘love of Gary’ and her family keep her going but admits that funding extra services like her husband’s weekly trip to the hydrotherapy pool and short breaks to special disabled-friendly cottages near Blackpool at Brickhouse Farm, are difficult but essential.
For now, she’s hoping that technology can unlock her husband’s condition.