Half a century with a death sentence — and still here to talk about it

Andy McGovern, a 92-year-old from Cloone, Co Leitrim, has lived with Motor Neurone Disease (MND) for nearly half a century — making him the world’s longest-known survivor of the condition after Stephen Hawking.

On June 18, he was honoured with a national award presented by An Taoiseach on behalf of the Irish Motor Neurone Disease Association (IMNDA).

“They brought me up to Dublin for the Heroes Award,” Andy said. “I'm no hero, for a start. It’s another trophy I could well do without.”

Now in his nineties, Andy describes his survival not with triumph, but with a quiet sense of reckoning.

“It’s like falling between two stools, you know,” he said. “One of them is going to get me.”

He’s no longer afraid — of MND, or death.
“That’s the point about motor neurone disease. It feeds off fear,” he said. “But I wasn’t afraid of it. I’m not afraid now because I’m old — and I’ve had a great life.”

Andy was first diagnosed in 1977 after noticing a strange stiffness in one finger.
“The circulation was fine. The feeling was there. It just wouldn’t move,” he recalled. “I didn’t think much of it at the time. It was only when the second finger stopped working that I went to the doctor.”

Eventually, a neurologist gave him a presumptive diagnosis of MND. He was in his forties.

Since then, he’s watched the disease take neighbours, friends, and public figures like Charlie Bird and Colm Murray.

“Some of them, it came on quick. I had a friend ten years younger than me — gone in two years,” Andy said. “You do feel a bit guilty.”

MND causes progressive degeneration of the motor neurons in the brain and spine. Over time, the body’s muscles waste away. Most patients live just 2–5 years after diagnosis. Andy has lived with it for 47.

“Some lose their speech or ability to swallow. For me, it’s my hands and arms. But no two people have the same symptoms.”

Through decades of slow progression, Andy has remained an advocate, an author, and a voice of hope for others diagnosed.

He’s met countless people with the disease — many of whom didn’t survive. “I’ve seen people younger than me go in two years. I’m still here.”

He never met the late Charlie Bird, but was in contact through mutual friends. “Charlie was great for awareness. When people like him speak out, it helps the rest of us.”

Despite the immense challenge, Andy’s mindset remains remarkably positive — a philosophy he believes has helped him stay alive.

He traces that shift in thinking back to a spiritual moment after visiting Lourdes in the late 1990s.
“Lourdes gave me a lot, it made me look inside myself, and I found courage there. I climbed Croagh Patrick twice after that. No stick, no help, never slipped. Lourdes gave me that, it empowered something greater than myself.”

Despite the disease’s cruelty — the wasting of muscles, the loss of independence — Andy continued to write using voice recognition software and offer support to those newly diagnosed.

“There were three of us in Dublin, good friends. We talked about it. Mind over matter. But I’m the only one left.”

And so, in a quiet house in Leitrim, Andy keeps going — no longer striving for cures or spotlights. Just living. Remembering. Reflecting.

“I had a great life,” he said.

His philosophy is simple: everything you need is already within you.

“There’s oceans of power in your body — even when it’s being taken from you. If you stay positive, you find new strength. Everything you need is already within you.”

Andy McGovern’s legacy is not just one of survival — but of resilience, empathy, and enduring hope.

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