MND Sufferer given weeks to live wants to help others defy doctors

By admin | on September 24th, 2015

THREE years ago doctors said motor neurone disease patient Calum Ferguson had just six weeks to live.

Now he has confounded the medics and is within touching distance of completing a £60,000 fundraising challenge to help other people with the terminal condition.

Ferguson, from Dunblane, said: “I’m no miracle. With a combination of good care, equipment, ventilation and physiotherapy I have come back and my health is stable. The focus of my campaign is to make sure people have the care and equipment they need now.”

Motor Neurone Disease (MND) is a degenerative neurological condition characterised by muscle weakness which causes the body’s functions to shut down over time.

Ferguson, a business manager with a US financial management firm, was in “robust” health when doctors told him he had MND in March 2010. Their worries were triggered by his results in strength tests, despite him following a healthy lifestyle that saw him regularly visit the gym.

The father of three was initially given a life-span of up to two years and in 2012 he began using a wheelchair, with his condition deteriorating further during the year.

Now he has fought back to health and has pedalled the equivalent of 1,650 kilometres on a rehab bike in an effort to help the charity MND Scotland buy similar equipment to help Scotland’s 464 MND patients.

The 52-year-old claims access to such equipment and care is a postcode lottery and so aims to raise awareness of this and to influence government policy on healthcare for those with terminal conditions.

Now just £1200 shy of his £60,000 target, he wants The National’s readers to help him over the finish line.

Ferguson, who uses Eyegaze software for computer work and relies on a ventilator to assist his breathing, said: “There’s a lot that can still be achieved by somebody with this condition.

“I’m very much a problem-solver. I want to help others as best I can. In Scotland in 2015 we shouldn’t have 400-odd patients facing a postcode lottery for availability of services.”

Of his diagnosis, he said: “It was a complete shock. I was physically very fit and we had lots of holidays with the kids. I went for a medical in Glasgow and a strength test put me in the 53rd centile. I was a fit male, six foot tall, and they expected me to be in the 75-80th centile. By March 2010 my strength was down to the 43rd centile. That was an indication there was a problem.

“Two weeks later I was in the Southern General being told: ‘You’ve got 18 months to two years to live, mate.’ There was very little sugar-coating. Glaswegian doctors tell it like it is.”

Ferguson’s children were eight, nine and 12 at the time and the family focused on spending time together until doctors gave the dad just six weeks to live in December 2012. He said: “If I had stopped my ventilator I wouldn’t have made it to Christmas 2012. I was in the Western General in Edinburgh for five weeks.

“My breathing was the equivalent of being up Mount Everest with no air. One third of my lung had collapsed and I was in a pretty poor state.”

Ferguson’s family has sourced and paid for much of his equipment and say lack of provision on the NHS means many patients are prevented from improving their odds.

He said: “It’s as good an environment as you can probably create, from bed to wheelchair to my ventilator and toileting equipment. When you’ve got a terminal condition like MND you are not expected to survive long so provision is not brilliant. I had to buy my own wheelchair and replacing the lifting mechanisms costs £300 each. Hiring the rehab bike costs £750 a quarter.”

Ferguson, who uses his rehab bike every day, has received the backing of Olympic gold medal cyclist Chris Hoy and intends to continue fundraising after achieving this target. He said: “I have done much, much better than anyone expected. Doctors play averages. Every one in 10 patients does defeat the odds. I’m just lucky I don’t have a more aggressive version of MND.”

Iain McWhirter, head of fundraising at MND Scotland, said: “Calum has been an inspiration in his determination to raise funds for the MND Scotland equipment service. We totally rely on people like Calum fundraising to enable us to provide this service.”

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