Andy defies odds with ‘hero gene’
Diagnosed in 1976 with motor neuron disease, the future looked grim. In fact, it barely existed at all. The expert prognosis was that he might live, severely disabled, for between two and five years.
“I survived, much to the amazement of my neurologists,” says Andy, attributing his longevity to inheriting a steely strength from his parents who struggled to raise a family in the poverty-stricken 1930s, 40s, and 50s.
The specialist who forecast Andy’s early demise has been dead for 25 years. Andy is still with us, living life to the full, enjoying time with his wife, Bridget, six adult children and nine grandchildren, and drinking Guinness through a straw in McCaffrey’s pub in his home town of Aughavas in Co Leitrim.
Andy, Ireland’s longest MND survivor, was born on a small farm in 1933 and shared in his family’s seasonal work of sowing crops, saving hay and turf, and harvesting potatoes and oats.
Leaving school at 13, he worked as a machine contractor. In the 1950s, he emigrated to London, where he was involved in construction and bar work. He and local girl Bridget married and they returned to live in Leitrim in 1964.
Andy had established a successful machinery contracting business and had six young children when, at the age of 43, he was diagnosed with motor neuron disease.
He is now preparing to celebrate his 80th birthday with the launch of his book, Against The Odds, an account of his life before and after his diagnosis. It was written with the aid of voice recognition technology, as he does not have the use of his arms or hands. He typed an earlier book with his right foot.
Every now and then, Andy calls on what he calls his “inner hero” to deal with adversity. “There are two people in all of us,” he says. “There is the person you meet every day and the other person you meet when things go wrong, who will challenge you and help you meet the struggle.
“When I am challenged, I ponder for a few seconds and then get on with it. It might be a simple thing like changing the TV channel, so I put a stick in my mouth and just do it.”
In the early days of his diagnosis, it was the simple things that got to him. “Acceptance did not come for years,” he says. “I fought against it and I found it hugely frustrating that, even when I was still capable of hard, physical work, there were some things that would defeat me, like turning the key in the car or holding a cup of tea or a pint.
“I would come home to eat, too embarrassed to eat out, trying to conceal my disability, but it was winning all the time. The frustration of not succeeding was like the straw on the elephant’s back.”
He first encountered his inner hero in 1997 while climbing Croagh Patrick. “There were two men with me, one in front and one behind. I told them not to touch me unless I fell and couldn’t get up. I never slipped and made it to the top.”
Andy’s “inner hero” may be more than mind over matter. Scientists have discovered what they term a “hero gene” that allows some people with motor neuron disease live longer. British and US researchers analysed the DNA of more than 5,000 people, including 2,300 with the disease. This revealed that a gene called KIFAP3 (kinesin- associated protein 3) was key in determining the survival of patients.
