'I wasn't going to let the condition define me': Former GAA star Anto Finnegan on his battle with Motor Neuron Disease
Since his diagnosis with Motor Neuron Disease, former Antrim footballer Anto Finnegan has helped raise thousands for charity and strives to lead as normal a life as possible with his family
Hard as it is to contemplate, it's now three years to the month since Anto Finnegan went public with his Motor Neuron Disease condition.
The former Antrim Gaelic football captain had been diagnosed with the condition in August 2012. He hadn't been feeling good. On fine and sunny evenings he liked nothing more than to hop on his bicycle and go over Black Mountain in the direction of Aldergrove, but that became a strain.
At his work in BT, he had been instrumental in forming a running group that went out at lunchtimes. His body began betraying him with regularity. He wasn't seeing the same progress, wasn't feeling that fitness he had maintained from the time he became that most rare of Antrim footballers - the captain of an All-Ireland winning team, when they beat Fermanagh in the 1999 'B' final.
He wasn't to know at the time, but his muscles were already wasting away.
The lay definition of the condition is that motor neurons cease to work, meaning signals from the brain never reach their intended muscles.
There is no cure. There never has been. And the upper end of prognosis for the disease is five years. Not much for a man with a wife and children.
"Really, it is just testing on an on-going basis, but there is no treatment for it," Finnegan explains.
"In relation to my overall condition, it has probably progressed like it started. It has been a slow progression compared to some people who have had the condition. I was hoping that continues, or sometimes what can happen is the condition can arrest itself, where there is no deterioration for a period of time. That would be an ideal scenario for me, to be honest."
It may sound incredible, but in the face of such a stark situation, Finnegan is enthusiastic and upbeat.
For such a mobile presence in his sporting career, regrettably balance has become a problem. He requires assistance when he is walking, while he always has a stool close to hand.
But he says defiantly: "It's one thing I said when I was diagnosed, I wasn't going to let the condition define me or the type of person I am.
"One thing I love and have always loved is following sport, and a wide variety of sport. Particularly to go and watch GAA games. It's just a matter of planning a bit more than I would have before. There would be no point going public about it and then shying away from it and not attending games. Absolutely."
He and his wife Alison have been busy with his foundation, 'deterMND', launched at the time he went public in order to raise funds and awareness in the battle against the disease.
Their latest round of activity was a collection at the Feile An Phobail activities in west Belfast, the second year they have partnered with them.
"When we set up the trust, we said it was all going to be very hands-on," the 43-year-old begins. "We weren't going to set up anything and hand it over to somebody else to deal with.
"We had a very clear view of what we wanted to do with the trust, and we wanted to keep as close to our objectives as possible. We still manage everything, the two of us."
They have a tight-knit group that offers expertise. A group of trustees take care of the finances and they are always looking for volunteers when they have an event, and that usually falls on himself and Alison.
As for the social media and mailshots, writing emails and keeping on top of the communications, it's down to them.
The objective is to raise money and awareness, and they are making serious headway, making donations to 'Project Mind', a worldwide initiative that captures DNA of people with Motor Neuron Disease, identifying the genes that cause the disease and working back from there to identify treatments.
If a cure can be found, it's going to come too late for Anto. He knows that and has made peace with it. It doesn't stop him going to extraordinary lengths for someone else's father, someone else's husband, someone else's son.
He adds: "There is a group based in Trinity College, Dublin, that is headed up by Professor Orla Hardiman. This year and last year, we made a donation to their project. Last year it was to help them finance the cost of getting the samples from people, because it is quite an expensive process.
"This year we made a donation in support of the second round of research in relation to the gene discovery. All in all, that's about €60,000 donated over the last year, which is pretty good."
He is speaking shortly after his son and daughter have just gone back to school. They keep family life at the heart of everything.
"It's just about making adjustments and change and we do that together as a family. We do what we think will work for us," he says.
"So far, we think it has worked okay under the circumstances and we will continue to do that."
Since the 'Game for Anto', the spectacle when Dublin came to Kingspan Stadium to take on an Ulster Gaelic football select in November 2014, he reckons the family have been on holiday seven, maybe eight times.
In July, they travelled to America, beginning in Washington.
"I loved it," he enthuses.
"We did all the usual stuff, the National Monument, the Lincoln Memorial, Capitol Hill, the White House and Arlington Cemetery. We got plenty packed into it before heading onwards for a cruise of Bermuda and the Bahamas."
They took in New York then for a quick couple of days before returning home to Belfast.
Further trips are planned. "We wouldn't be the type of people who go back to the same place all the time, we like to try different places and we continued to do that over the last couple of years."
The novelty of social media, witnessed most prominently in the 'Ice-Bucket Challenge', has been a key factor in the work of the foundation.
"It (the Ice-Bucket Challenge) was able to take the research to a level that we would never have dreamed possible," he enthuses.
"We go back two years ago, there have been great strides in terms of genes discovered that are part of the cause of the condition.
"We are doing our bit. If you think in terms of money raised in the world it's probably small.
"But one thing we always wanted to do was to have control over where we target our funding. By raising the money at our end we are able to do that, and that's good."
There have been more milestones, more anniversaries.
Last November, he celebrated working 20 years in BT.
"They are a wonderful employer. They continue to show it," he comments.
"I work from home more or less permanently now. But any adjustments that I need they have been there to support me when I needed it. It is really appreciated and it is needed. It makes things that bit easier."
From speaking to Anto, you can't help but be uplifted. Ask him if life is good, despite everything he has to deal with, and he answers with an emphatic; "Absolutely!"
He continues: "Everybody deals with things in different ways and their own ways. I am a married man with two relatively young children, who has enjoyed 40-odd years of healthy sporting lifestyle.
"Because that physical side of my life is not possible, that doesn't mean I can't enjoy all the other stuff that goes around my life. I will continue to do that."
He adds: "I have a wonderful wife and two children who have proven over the last number of years to be very adaptable. When we want to do something, it is not an obstacle, and we continue to do that, and it works for us."
Nobody knows how they might react in life if they are thrust into a limbo, told they have an incurable, irreversible disease.
But the best you could hope for is to accept it and face it down with the same energy, spirit and courage as someone like Anto Finnegan.
A servant of Antrim football. A family man.
And a total inspiration.
If you wish to contribute to help fight Motor Neuron Disease, you can get involved or donate directly to the foundation website at www.deterMND.com