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Friday 24 January 2020

'I'm not afraid of death but I do fear losing my independence'

Motor neurone disease has made Fr Tony Coote determined to help other sufferers, writes Emily Hourican

BEST FOOT FORWARD: Fr Tony Coote of Walk While You Can ( with Des Cahill of RTE.
BEST FOOT FORWARD: Fr Tony Coote of Walk While You Can ( with Des Cahill of RTE.

For someone recently diagnosed with a disease that leads to wasting of the muscles and a steady degeneration of physical ability, choosing to walk 550km, from Donegal to Cork, is hardly the obvious choice.

Yet this has been the response of Fr Tony Coote, parish priest of St Therese in Mount Merrion and former chaplain in UCD, to the news delivered in April that he has motor neurone disease (MND).

He plans to raise awareness of the considerable plight of those with the disease - lengthy waiting lists, over-burdened medics, medication that has remained unchanged for 24 years and only three specialist nurses to cover the 400 people living across Ireland with MND. He also plans to raise €250,000 for research and support.

MND is a terminal illness, but Fr Tony's response has been remarkably decisive and upbeat. Following the initial shock, he resolved to do something positive, saying: "I want to use the time that I have left and my voice to do something positive, and I invite everyone to become part of Walk While You Can by walking, donating, organising a fundraising event or offering overnight accommodation for me and the team of six, who are also walking and helping me to go the distance.

"This time last year I was fit and healthy - I had no idea what was in store for me. None of us know when it might be our turn, and so I'm determined to turn my experience into a positive force for future generations of MND sufferers," he says.

And so, on Tuesday, he will begin in Letterkenny, stopping at Ballybofey and Donegal town on the way to Sligo, Mayo, Galway, Clare, Limerick and Cork, arriving in Ballydehob on Friday, August 6.

Although the disease has already physically affected Fr Tony, adding difficulties to his normal everyday life, he continues to work in his parish, and to trust in God.

"I'm not afraid of death," he says. "Of course I'm afraid of losing my independence and, even though I struggle with it, I get up every morning and say, 'Lord, thank you for today, please help me through the rest of it'. It is frustrating because everything is slower and takes longer. But I'm not angry. I don't ask 'why me'.

"Things happen in life and I leave myself in the hands of God and Jesus Christ, who I look forward to meeting anyway."

Motor neurone disease is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. It means messages gradually stop reaching the muscles, which leads to weakness and wasting.

The cause of MND is not known but there may be environmental factors that trigger the damage in people who are susceptible to the disease.

  • For more details about meeting up and supporting Tony Coote and Walk While You Can, visit:

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