Ballymore dad turns MND diagnosis into mission to help others
'This is about more than just myself'
By Rebekah O' Reilly
Ballymore resident James McCoy is aiming to inspire others with his positivity, despite being diagnosed with Motor Neurone Disease in March of this year.
The 42-year-old father-of-two first noticed something was amiss last October, when he started to experience twitching in his upper right arm.
“At the time, we had just lost my Dad, and I noticed when I was shaking people’s hands that I was catching them with my hand. I knew something wasn’t right, but I thought it was a trapped nerve.
“I went to a physio in Longford, and she told me she didn’t usually see this type of twitching, and told me to book in with my GP and to ask for an MRI.”
James went for an MRI in December, and it was discovered that he had slipped discs in his neck. By January, he had started to notice problems with his right leg.
“That’s when they started to think it was a neurological issue. The doctor was sending out referrals, but she said if it gets worse, to go to Galway University Hospital (GUH), because they were trained to deal with it.
“Like a typical man, I put the letter in my glove box for about two months. By March, my arm was getting weaker and I began to walk with a limp. I knew I needed to get it sorted.”
After arriving at GUH, James underwent a series of physical examinations, an MRI of his spine and brain, Nerve Conduction Studies, and a lumbar puncture.
The results pointed towards Motor Neurons Disease. He was then sent to Beaumont Hospital where he met with Professor Orla Hardiman, Consultant Neurologist, to confirm the diagnosis.
“We went to Beaumont, my family were with me, and we all kind of knew that it was Motor Neurone Disease (MND). We met Professor Hardiman, and she was absolutely fantastic. She made me feel heard. I was talking to her for over an hour, and she never once looked at the clock.
“She confirmed it was MND. She told me there’s plenty to play for, because I’m so young and I’m still strong. I actually felt better leaving the consultation after getting the diagnosis than I did going in there.”
After his diagnosis, James decided he needed to remain positive in order to fight the battle against MND.
“I thought to myself, if I allow this to consume me, there’s no way I’m going to be able to fight it. It became about more than just myself, and I decided I wanted to try to inspire other families who are going through the same situation.
“I also have two daughters, Roisin is 13 and my younger daughter Maebh is 10, and having to explain it all to them was the hardest thing I’ve ever had to do. They are my biggest inspiration, and I will do absolutely everything I can to make sure they have their Dad.”
In the months since his diagnosis, James has noticed signs of the disease progressing. The dexterity of his right hand has become limited, and he’s noticed changes to the muscles in his throat, which are affecting his swallow.
“I suppose, every day living with MND you’re living with the fact that the disease is progressing, but you try to stay hopeful.”
The Ballymore resident has a huge level of trust in Prof Hardiman and Beaumont Hospital, where he has been receiving ongoing support.
“I was put on a treatment called Rilozule as soon as I was diagnosed, and I also found a supplement called The Deanna Protocol, which has hugely boosted my energy levels in the last couple of weeks. I have been following a keto diet, but this may not work for everyone.
“I do my own research on different treatments and trials by reading medical journals and peer reviewed studies, and the doctors are always happy to talk to me about these. Professor Hardiman has also started putting me forward for clinical trials, and there are a lot of promising trials out there.”
The 42-year-old has also been receiving ongoing support from an occupational therapist, as well as the Irish Motor Neurone Disease Association (IMNDA).
James shared that the diagnosis with MND has given him a different perspective on life.
“I was always a very independent man, so having to learn to lean on other people has been a big adjustment. My friends and family have been a great support to me,” he said.
“My friends in work set up a GoFundMe page, and I honestly can’t look at it, because it’s overwhelming to think that many people have gotten behind you - of course, your family and friends, but even strangers, and childhood friends - it makes me very emotional to know that support is out there, not just for me but for others in my situation too.”
The GoFundMe page for James had amassed over €37,000 from some 439 donations as of Monday, June 16.
“I want to thank all my work friends Tom, Brian, Catherine, Michael, Tracy, Joanne, and Laura and everyone else who have been absolutely incredible, the MND Clinics in both Galway and Beaumont, and my friends,” said James.
“I also want to thank my daughters, Roisin and Maebh. They have been my biggest inspiration and have brought me so much happiness through our inside jokes and their helpfulness. They are just the best girls. And a very special thanks to my sister Mary for being so strong for me, my brother Connie for being my big brother and always making sure I’m okay, and my Mam Kay, who shows me love and care every day.
“Without them I wouldn’t be the man I am today and I wouldn’t have the positivity and strength to be able to fight MND every day. Even though my Dad has passed, I know as well that he’s giving us all the strength and courage to face this fight together.”
As he looks toward the future, James aims to offer support and awareness to other families battling MND, as he begins to document his health journey online.
“I want to share a message of hope, and I thought if I can share what’s been helping me, my first-hand experience and real information about treatments and trials, maybe I could help someone else.
“While you can’t control how MND progresses, you can control your reaction to it, and that’s my every day now.”
* To donate to James’ GoFundMe page, go to: www.gofundme.com/f/james-mnd
You can follow his health journey on YouTube at: www.youtube.com/@JamesMND