IrelandBrave Dublin priest with motor neurone disease opens up about facing death

© Provided by Trinity Mirror Shared Services Limited Fr Tony Coote raised €550,000 through his 550km pilgrimage

A priest with motor neurone disease who walked the length of Ireland to raise funds for fellow sufferers admits the gruelling trek has accelerated his disability.

Fr Tony Coote, a former chaplain at University College Dublin, raised €550,000 through his 550km pilgrimage after he was diagnosed with the incurable condition in April.

Cameras followed his progress from counties Donegal to Cork for an RTE documentary which shows his courage as he opens up about facing death.

He said: “I’ve become more disabled since being on this trip. This has been the longest funeral in a sense where you hear so much about yourself.

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Motor neurone disease is a rare condition where parts of the nervous system become damaged. This causes progressive weakness, usually with muscle wasting. Motor neurone disease ( MND ) is a uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.

A documentary about the thin space between life and death . With five months left to live, paralysed from the neck down by motor neurone disease I want to open my little window and let the summer breeze grow, whisper and then turn everything in a new sky free of all the dark clouds that changed

“In a quirky way I am the guest of honour at my own funeral. People are saying things to me as if may this is the last time they’ll see me. It’s rewarding and disconcerting.”

The 54-year-old, from Kilmacud parish in South Dublin, added: “The illness has debilitated me but it hasn’t taken away my spirit or my ability to do things. I can’t take it away, so I just have to live with it.”

Consultant neurologist Prof Orla Hardiman followed Fr Tony’s progress and said she wasn’t surprised he lasted the distance against medical odds.

The cleric led a growing army of supporters on his journey from Letterkenny to Ballydehob alongside his brothers Kieran, Pat and David.

David said: “The disease is moving through him very, very quickly, very rapidly. The journey has accelerated it.

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* Motor neurone disease affects about 5,000 people in Britain and about five patients a day die of the condition. It is a progressive disease that causes total paralysis of the body. * The disorder is caused by the death of the delicate nerve cells leading from the brain and spinal cord to the muscles.

Motor neurone disease . November 2018. Let terminally ill man choose when he dies, supreme court told. Developments in eye-gaze technology – which converts minute movements of the eye into spoken words – are opening up undreamed of opportunities for people with motor neurone disease .

“I think he knew that was going to be the case. Rest is one of the key things you should do when you have this illness and he hasn’t had any for 28 days.”

© Getty The facade of a building of Trinity College is pictured in Dublin on August 5, 2017. Trinity College is the sole constituent college of the University of Dublin, a research university in Ireland. (Photo by Alberto Pezzali/NurPhoto via Getty Images)

Even though he knew he was deteriorating, Fr Tony refused to take a break and even stopped off to say Mass in Knock.

He said: “I always believed life is a journey to a destination and that

destination is heaven. I’m not going as slowly as I thought to that destination.

“Even with my illness I still treasure what I have. It’s a different kind of life but I treasure it.”

Walking the Walk airs on RTE One on Thursday at 10.15pm.