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Living With Locked-In Syndrome

Former Wanderers star Gary Parkinson has suffered locked-in syndrome for four years after a stroke.

Here Bolton News reporter TONY DEWHURST speaks to his wife Deborah abut how she and the family have coped

THERE’S a photograph of former Whites star Gary Parkinson on his own website that gathers further poignancy each week that passes for Deborah Parkinson.

It shows him surrounded by his wife, and three children Sophie, Luke and Chloe at the Riverside Stadium before a clash between Middlesbrough and Burnley — two of his former clubs — last Christmas.

Deborah recalled: “The hardest part for Gary that day, I think, was when he heard that noise of the studs on the concrete floor, and seeing the players lined up in the tunnel.

"That was difficult, and then I could see Gary start to get very agitated and he couldn’t hold back the tears when he heard the response from the fans, singing his name.

“Out on the pitch and with 20,000 supporters inside the stadium, there was an incredible stillness. All I could hear was Gary breathing.

"We were in a bubble of silence, despite all that raw emotion in the ground.

“That was the first time Gary had been back to a football stadium since his stroke and none one of the family will ever forget that moment.”

Four years has passed since former Wanderers star was struck down by locked-in syndrome on the morning of September 7, 2010, while working as a coach at Blackpool – a condition that left him awake but unable to speak.

Throughout, though, Gary’s dearly-loved wife has been at his side, unstinting and encouraging, willing the man she met at high school to get better.

To witness Deborah’s love and dedication for her husband is humbling and there is something truly reassuring about her presence.

She is a kind and good woman.

Deborah points to a case overflowing with cards, keepsakes and goodwill messages.

There is a card from an 18-year-old Bristol City fan, who mailed £10 to the Gary Parkinson Trust, while miscellaneous programmes sent by supporters rekindle memories of his 18-year playing career with Middlesbrough, Bolton, Burnley and Preston.

She said: “Sometimes, if I get a bit down, I’ll play a DVD from one of Gary’s fundraising events, and listen to people making speeches about Gary. I say to Gary, ‘Look how many people love you and want to help you.’ It gives me strength to keep going for him.”

For two years Gary was fully reliant on 24-hour care at the Priory Highbank Centre for Neuro-Rehabilitation in Bury, where every single day his his family would visit him.

Deborah said: “When Gary had the stroke, we were told the life expectancy could be two or three months. We nearly lost him, but here we are four years later. He still has that sparkle in his eye and we have a laugh and a joke.

“Everybody who comes in says that they find it hard to comprehend because he looks so well. His skin is beautiful and he has that lovely, healthy glow.”

As Gary is unable to speak, he uses his eyes to work through the alphabet with Deborah, identifying which letter and word to use by blinking.

“Although he can’t communicate verbally, he does get his point across. I can tell if he’s going to make a joke, or if he’s serious or upset. I can still see it in his eyes believe it or not.”

Deborah says only Gary can understand the anguish of his condition, despite the great love of his family.

“We can only imagine what he is going through,” she added.

“It must be torture for him and he will say that sometimes. Imagine not being able to touch anything or speak out, waking up every day and the condition is still there. How Gary goes through the day I don’t know. We try our best to help him through it, try and reassure him, and hopefully tomorrow will be a brighter day.”

Deborah added: “This is an act of God and we can’t help what’s happened. It is nobody else’s fault. That’s what matters now – how we deal with it for Gary.

“We are so incredibly proud of him – and the one thing we are all pray for is that one day he will be able to talk again.”

Deborah marvels at people’s kindness and warmth, but how does she cope to see the man she loves stricken in such a cruel way.

“The answer is that I don’t really know,” she said. “I’ve always had that inner strength I think.

“I say to Gary, ‘Move forward, you don’t know what tomorrow will bring’.

“I do try to be very positive and that’s how I want everybody else to be around Gary, the children, carers and family members.

“We know how everybody is feeling deep down, but we want a good vibe around Gary.

“I’ve felt a bit guilty when I’ve let it slide occasionally.

“Sometimes, just a coffee morning with my friends and I’m back up again.

“Other people have got problems and I like to go and listen to them too.

“It has distracted me from what’s going on in my life – I come back stronger – and I feel stronger again for Gary because otherwise your life is overtaken by it all.”

The number of people who fully recover from locked-in syndrome is tiny, but Deborah says she draws strength from Kate Allatt, who regained all physical capability after eight months ‘locked in.’

Her story has been as a source of motivation for Deborah: “I read Kate’s book at Gary’s bedside during those dark days in hospital.

“I kept going on at Gary and when she came to visit I said, ‘Now do you believe? She is living proof and has walked up that staircase to see you’.

“It’s happened once and there’s no reason why it can’t happen again.”

Another great cause of inspiration for them both has been their three children, Sophie 10, Chloe, 18, and Luke, 21, who landed a first in Sports Journalism at Leeds University.

“Chloe found it the hardest, and couldn’t understand why her dad couldn’t talk,” added Deborah.

“I think it took her six months to accept it, but their relationship is incredible.

“It is unbelievable how she can make her dad laugh.”

Of Gary’s many visitors, Deborah recalls a recent visit from his former Middlesbrough pals, Bernie Slaven, Mark Proctor and ex-Manchester United and England international Gary Pallister.

“Gary grew up with those three, and I left them in the lounge and went to sit in the garden,” she said. “All I could hear was laughter, screams and the sound of football banter coming from the room.

“They were hard men on the football field but I saw their softer side when they came to visit Gary. Most of all, though, it was lovely to hear Gary laugh.

“That filled me with great joy and happiness.”

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