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Motor Neurone Disease is ‘a nightmare but I’m adapting’, says priest

Fr Tony Coote, who has motor neuron disease. Photograph: Dave Meehan

At 9.30am on Tuesday, Fr Tony Coote (54) will set off from Letterkenny, Co Donegal, on a marathon fundraising journey that, all going well, will see him arrive in Ballydehob, Co Cork, on August 6th.

The aim of the Walk While You Can initiative is to raise money for research into motor neuron disease, and for support services for carers and families of those struck down by the condition.

This time last year he could not have imagined any of this. Then administrator of Mount Merrion and Kilmacud parishes in south Co Dublin, he “had a fall last November at the back of the church coming down some steps” and thought “I had missed a step”.

My total mobility went only three, four weeks ago. I had two really bad falls

Over time his hand “began to become a bit more distorted” and he was sent for an MRI scan. “The young neurologist told me I had motor neuron disease.” The priest “literally went into shock and fell on the floor”.

The decline since that diagnosis in March has been rapid. “My total mobility went only three, four weeks ago. I had two really bad falls.”

Parishioners sponsored the wheelchair he is sitting in as he speaks. He is “in it most of the time. I say Mass in this at a small table in front of the altar, here in Mount Merrion at Kilmacud. No one minds.”

About four weeks ago, when he could not get his socks on, he realised he needed a carer. That man will take up his role when Fr Coote returns from Ballydehob.

The priest will undertake the journey there from Letterkenny on a mountain trike. “It allows me to propel by a bar at the front” and it can be pushed.

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