A BRAVE father who is facing his final battle with a terminal illness has spoken of his pride in two close friends who are set to take on an extreme fitness test in a bid to raise awareness and funds in his name.

A driving instructor of 20 years, following on from an 18-year career in the shipyard, Gordon Cooney is well-known across Walney and Barrow and his diagnosis with terminal muscle-wasting condition Motor Neurone Disease (MND) in 2014 was met with shock and disbelief by so many. 

Now aged 57, and with his health and physical fitness fading, Mr Cooney is pragmatic about his condition and future. 

But when he describes recording videos to be played at his funeral, and to be played for any future grandchildren he might have, but will never meet, the emotional impact is clear on both Mr Cooney and his wife Gill, who live in Strathnaver Avenue on Walney. 

“You spend a lot of time lying there just thinking about the disease,” Mr Cooney said. 

“You go through the normal stages of denial, bargaining, anger and then you just accept it. I've had a good life. I'm not bothered about me. It's my family I worry about.” 

Mr Cooney was diagnosed just two months after the couple’s 22-year-old daughter Vicky died suddenly in her sleep following an epileptic seizure. He believes the family had not been adequately warned about the risks Vicky faced and says his dying wish is to raise awareness about sudden unexpected death in epilepsy (SUDEP). 

“If I save one life, I've done something,” he said. “That's all I want to do with the time I have left.” 

Thanks to support from the MND nurses from Preston, careers from Hey Days Care Agency in Barrow, the speedy completion of Gordon’s purpose-built extension downstairs by Ocean Construction, St Mary’s Hospice and an endless queue of friends and family, Mr and Mrs Cooney are able to spend as much quality time as possible together, and with their 22-year-old son Thomas. 

“He was a chef working away but he changed his career and retrained so he could come back here and live with us,” Mrs Cooney said proudly of her son, who works at the shipyard. 

“He has been so mature about everything that's happened.” 

Close family friends Matt Robson, 23, and Dan Hayes, 30, were so inspired by Mr Cooney's attitude and bravery, they will tomorrow take on the Manchester Marathon in his name. The pair have so far raised almost £1,500 for the Motor Neurone Disease Association. 

The condition is cruelly degenerative and although typically rare, both Mr and Mrs Cooney cite medical professionals’ surprise at Cumbria’s higher than average incidence rate. 

Typically, the disease affects two people in every 100,000. There are 50 cases in Cumbria - five times the national average, an anomaly which has so far baffled the experts. 

And yet, despite the tragedy the Cooney family has had to face over the last few years, Mr Cooney's sense of humour and positive attitude continues to infect those around him. 

As a driving instructor, he taught thousands of youngsters across south Cumbria to drive over his 20-year career. When it was put to him that he must have a lot of patience, he replied: “The dual controls help. You just need really good forward planning and you won't die.” 

Mr Cooney taught both Mr Robson and Mr Hayes to drive and proudly adds that they both passed first time. 

“It was a very rewarding job,” he said. “I got so much out of it.” 

Although the couple are frank about Mr Cooney's prognosis - MND has a life expectancy of 14 months for 50 per cent of sufferers and five years for the remainder - medical professionals have said he is bucking the trend in terms of his deterioration. 

“I shouldn't be able to speak at this stage, or even swallow,” Mr Cooney said. “The doctors think that because I was so fit before I was diagnosed, maybe that's why I'm not as bad as they would have expected me to be by now.” 

Incredibly active before his diagnosis, Mr Cooney would visit Nuffield gym up to five times a week and was proud of his fitness levels. 

But after noticing he was struggling to use his fingers to play his beloved bass, and experiencing difficulty breathing while swimming, his MND was diagnosed. 

In the last two years, he has lost 48lb in muscle - the equivalent of the weight of six average newborn babies. 

Tiredness is a major factor - he goes to bed every night at 8pm and is mostly confined to a wheelchair, although is quick to show he can still walk when he needs to, and he is unable to last for more than an hour without his ventilator. When asked what he misses the most about his physical abilities, Mr Cooney said: “Playing bass.” 

As well as the videos he has recorded for his friends, family and future grandchildren, Mr Cooney has written his memoirs, to be titled Memoirs of a Nearly Normal Musician - “because no musician is normal”, he added. 

When asked if there is anything else he wants to do with what little time he has left, Mr Cooney displays the strength and selflessness his family and friends are so rightly proud of.

 “I've done it all,” he said. “I've been to see everybody, I've travelled. I am at peace.”

MOTOR neurone disease is a rare condition that progressively damages parts of the nervous system. This leads to muscle weakness, often with visible wasting.

MND occurs when specialist nerve cells in the brain and spinal cord called motor neurones stop working properly. 

Motor neurones control important muscle activity, such as gripping, walking, speaking, swallowing and breathing. 

As the condition progresses, people with motor neurone disease will find some or all of these activities increasingly difficult. Eventually, they may become impossible.