Living with Motor Neurone Disease: 'A horrible disease, but you have to be strong'

Maeve Kilgannon was just 56 years of age when she heard the dreaded words: Motor Neurone Disease.

That’s over two years ago now, but the Kinlough woman is keeping as positive as can be.

On December 6, she will host a coffee morning in Kinlough Community Centre with the intention of raising both awareness and hope. Maeve's Morning for MND will raise funds for two organisations, the Irish Motor Neurone Disease Association and Research Motor Neurone.

“People diagnose with MND might still have a lot of living to do,” she told Donegal Live.

“You have to be positive. To be truthful and honest, it is a horrible disease and it takes a little bit every day. It doesn’t give anything back, but you have to be strong and say, ‘let’s get through today’.”

At first, she was diagnosed with  polymyalgia rheumatica in 2022. She relapsed and was given a course of steroids but when she was having bloods taken, her doctor, Gerry Ballantyne, noticed something amiss with her hands. Maeve felt that she might have been suffering from arthritis.

“I noticed that in couldn’t work buttons and the muscle was gone, so all of that started the ball rolling and I got referred to a neurologist,” she said. “It is a slow deterioration for me. My hand dexterity is not good and my walking isn’t great. I use a scooter, I can talk and I can feed myself. 

“What I want to portray to people who have been diagnosed, yes it is a terminal disease, but everyone’s diagnosis isn’t the same. Everyone is different. 

“I was devastated when I was diagnosed. It felt as if the rug had been pulled from under me. Since speaking to the Motor Neurone nurses, I understand it a bit better.

“I am not Charlie Bird. He’s the person everyone thinks of when they heard MND, but it’s not like that for everyone. Everyone is on their own journey.”

Her MND nurses, Eithne Cawley and Charlene Crawford and the Irish Motor Neurone Disease Association have helped to provide a range of supports, including disability aides and tools. “They are a real lifeline for people who have MND and their families,” as Maeve put it,.

Maeve has also been taken by the work of Research Motor Neurone, Professor Orla Hardiman's charity in Beaumont Hospital, which is researching for a cure for the condition. 

“I attended with Professor Hardiman myself and had a trial,” Maeve said. “I was one of only two people in Ireland to have the trial. I was blessed to get the chance, even though it didn’t work for me. I will hope to get on another trial at some stage. Medicines are coming on and progressing all the time.”

A raft of prizes have been gathered to have a draw on the day of Maeve's Morning for MND, including signed books from Neven Maguire, Nigella Lawson, Darina Allen and Nadiya Hussain, CDs from Mary Black, tickets for shows involving Mrs. Brown's Boys, Dara O'Briain, Rob Beckett, Deirdre O'Kane and Daniel O'Donnell and a variety of hampers.

An iDonate page has raised over €3,200 and counting.

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For over 30 years, Maeve lived in Dromahair with her husband Mick, a Garda, and their two sons, David and Sean, but following her diagnosis the family moved back to Kinlough. 

“I have a great network of family and friends here,” she said. “I just want to make more people aware of MND now and hopefully people will take some positivity.”