The devastating condition destroys the nerves that power the muscles and there is no cure.
Mark, from Poynton, was told the condition would lead to paralysis and death, and this would happen within five years.
In an instant his life, as he knew it, changed.
Mark, 56 said: “I had done some research on the condition but that doesn’t prepare you for the shock of hearing it. That was hard to take. How do you deal with being told you will be dead in five years?”
The symptoms started after a minor surgical procedure. After a three-month recovery he expected some muscle wastage during what he experienced was severe in his hands and arms.
He said: “It started in my arms, and I felt the effect at work and playing flute and piccolo for the Royal British Legion Poynton Band. I suddenly found one of my forearms which would not straighten making it impossible to play. Then it began affecting my fingers.”
He was referred to a neurologist and after a year of scans and tests the cause of his failing health was discovered.
Over the next two years, Mark’s ability to control his limbs got gradually worse until he was unable perform simple tasks like dressing and washing.
By 2004 Mark had lost full use of his hands and arms. He was receiving full-time care.
Mark was not willing to relent to the disease. He volunteered to participate in clinical trials in a bid to prolong his life.
By 2009 Mark had surpassed the doctors’ prognosis, but his lungs had shrunk to 18 per cent of their normal capacity.
Mark begun using a machine to help him clear his lungs. Combined with music therapy, his lung capacity has improved, meaning that singing is quite literally saving his life.
Mark said: “Singing is the best exercise for my lung. I sing Lionel Richie and The Kinks. The results have been remarkable results. My lung capacity is now the same level as it was five years ago.
“I am not a betting man but there is a chance that if I make any further improvement I can live those five years all over again.”
Technology has enabled Mark to retain his independence. With his right foot he can control a tracker device linked to all the electronic devices in the house including using his computer.
Medical and technological advances aside, it is love that has been Mark’s most compelling crutch through his battle with his condition.
Lindsey, 46, met Mark when she began working as his carer and was swiftly won over by his sense of humour and personality. Mark unashamedly confesses, much to Lindsey’s embarrassment, ‘She gave me a reason to live’.
The couple, who married in 2009, live together on Dickens Lane with her sons, Ben, 17, and Sam, 16.
They try and have as normal life as Mark’s condition can afford. Lindsey said: “We go to the shops, visit friends and book holidays. While it is a massive undertaking with all the equipment we have to move around we’re determined to have a normal life.
“The way Mark has coped with his condition is miraculous. He has learnt to live with a frustration few could cope with.
“Many people from Mark’s old life have faded away, which is sad, but so many have stuck by him and that helps him.”
The biggest bugbear of Mark’s life is the public’s perception of his condition.
Lindsey explained: “The main thing we have to contend with is people staring at him, talking to me and ignoring Mark, or worse still, talking to him like he is stupid. So many people don’t realise that Mark is still firing on all cylinders up there, his mind is as strong as ever, it’s only his body that struggles. That’s what makes this disease so cruel.”
After years of enduring this misguided perception, Mark and Lindsey have decided to go public with his plight.
They are supporting a global screening of the film ‘I Am Breathing’, which documents the last year of young architect Neil Platt’s life as he succumbs to motor neurone disease.
Lindsey said: “We recognised the courage it must have taken for Neil to make that film. We realised that we wanted to do something to raise awareness of the disease, Mark’s situation and all those other people battling it.”
Now, almost 12 years on from his diagnosis, Mark is determined to live another 12 if he can.
He said: “The way I see life is that not everyone is lucky enough to make it to last orders. They might get hit by a bus or have a heart attack. But when you do hear last orders you have two options: to go on home or get another round of drinks in. I’m in the second category. I have never given up.”
‘I Am Breathing’ will be shown at the Civic Hall, Poynton, on June 21 at 7pm. Entry costs £3, and there will be a raffle and a cake sale. For more information call 0789 1062760 or email firstname.lastname@example.org.