Tony Coote is my name. On the Wednesday of the beginning of the recent snow in Ireland, I was told I had Motor Neuron Disease. Like others who have received such news I was terrified and my body went into shock. Around this time someone asked to remember that, ‘the diagnosis is not the prognosis’. I have repeated that in my head as a mantra every day. I have also committed myself to living each day, looking to the future and choosing to live rather than exist.
I am a priest in the Dublin Diocese working in Kilmacud and Mount Merrion parishes. I used to play squash twice a week and was always and the go thinking of the next plan and idea. This illness has slowed me up and for the first time since I was a child I fall over easily and have to watch the ground as I walk.
Since I was diagnosed I realised the only medication is 24 years old and that the Motor Neuron Disease Association can only provide three nurses for the whole country with just over 400 people living with this illness. Their salaries are paid for by church gate collections.
Rather than just complaining about these facts I want to use my time and my voice to do something about it. To this end we invite you to become part of Walk While You Can, to donate, walk with us, organise a fundraising event or offer accommodation to around 6 of us doing the whole walk.
All funds will be donated for research for new medication RMN and to the IMNDA for the care of those living with the illness.