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MND over matter: Brave Belfast man's marathon trek to raise awareness of his terminal muscle wasting illness

 

Ex-GAA star Anto Finnegan, now confined to a wheelchair due to motor neurone disease, completed an astonishing 90-mile pilgrimage, aided by his wife and friends, through southern France to Spain. Declan Bogue reports.

One thing that cannot be broken is the spirit of strong men and women.

People like Anto Finnegan, former Antrim Gaelic football captain who has been living with motor neurone disease (MND) since 2012, and his wife Alison.

Although Anto's disease is incurable, the couple have never shied away from what they feel their duty is now - raising awareness of MND in order to fund research.

The sportsman was never one to back down from a physical contest either, and earlier this month he, Alison and Anto's childhood friends Cormac Carmichael and Brendan Elliot travelled for six days along the Camino de France, a religious pilgrimage from France that leads to Santiago in Spain.

Along the way Alison kept a blog and took pictures, accompanied by one fact on MND a day and a daily inspirational quote.

Heading out from St Jean Pied de Port, they covered 144 kilometres in the six days, all the while pushing Anto, as he is now reliant on a wheelchair as his condition deteriorates.

The idea came as a result of a conversation between Anto and Cormac as they caught up over the Christmas period at the Ulster minor tournament hosted by Finnegan's club St Paul's in Belfast.

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Anto and the team during their trek

"We went for a beer afterwards and we were talking about summer holidays. He said he had been thinking about doing part of the Camino and that he had been thinking about doing it for a long time now," Cormac reveals.

"I sort of made a comment that if he wanted the company I would go along with him, but he would need one or two other people to push the wheelchair."

He ended the conversation there, as he didn't want it to become "pub talk", but they met a week later and the plan was developed.

"We decided beforehand that we weren't going to publicise it before we went because it was quite a personal thing for everyone, but when we were there we would do a blog and post it with a fact about MND," he says.

And so they found themselves, four old friends from Belfast, leaving the gates of St Jean Pied de Port and staring into a first 12km of climbing up The Pyrenees. They set off just past 8am and over 13 hours later had crested the mountains in rain and winds, stopping often so that Anto could be lifted in his wheelchair over rough terrain, reaching their destination of an old monastery on the way.

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Anto Finnegan with his wife Alison

It was a slog. Not even the location or scenery offered a consolation as the fog threw a veil over everything.

Alison's quote of the day in her blog was attributed to all four: "This has the be the last hill, it is bound to even out soon."

"There were moments when you would look down the valley and realised just how daunting the challenge was," recalls Anto.

"When you get to the top you have to get to the bottom. The descent was down into the valley, and because of the wheelchair we picked a path down that would have added on another four or five kilometres in difficult weather conditions."

On they went, from the monastery in Roncesvalles where they were awoken at 6am by Ave Maria playing through the speakers, to Zuburi. From Zuburi to Pamplona, to Puenta la Reina, to Estella and finally, at the end of it all, Logrono.

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Anto and the team during their trek

And in the end the strongest feeling wasn't even of achievement.

"There was probably a sense of relief, to be honest," says Anto.

"Each of us had commented on the rigours of the walk. On one of the days, I think it was the third day, we were going out of Pamplona and it was really challenging.

"We had stopped along the route just to have a chat and one of us said it was one of the most physically and emotionally challenging things that we could have done. And all of us agreed at once.

"That was only on the third day. It was then we recognised the significance of the task we had set ourselves."

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Anto and the team during their trek

He continues: "When we landed in Logrono the last day it was like the day we came into Pamplona. The hills weren't too steep, the paths were nice, big wide open spaces, lovely views and not too long a distance.

"We were able to get in early, get checked in, have a bite to eat and be able to reflect on what we had achieved. There was that sense of relief that it was over, regret that we weren't going on further, but also everybody was looking forward to getting home to see their families and kids."

Along the way Alison kept their friends, family, and charity associates up to date with their progress on their 'deterMND' charity website, set up on behalf of Anto.

"That was her baby. The photographs and writing up the blogs were hers every night, something that people back home said had resonated with them in terms of the challenge we had done," says Anto.

"There was a nice feeling of fulfilment that we had done what we had set out to do - to heighten awareness of MND - and we had done it together as four friends."

All that time in each other's company, with the challenges of the terrain and the physical exertion, was handled with good humour.

As someone who knows the competing needs of a large group as a former county football team captain, Anto says: "There are very few days go by when you are in a group environment where there is not a bit of tension and animosity and resentment in the group dynamic, and that just wasn't present on the week that we were there."

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Anto with his team-mates during their arduous six-day marathon effort

All of this represents what Anto is about. It's worth noting what MND is exactly - a neurological condition for which there is no cure.

Motor neurones stop functioning, meaning signals fail to reach their intended muscles. This causes muscles to waste and die.

It's extremely grim, but there is always hope. The average prognosis is between two to five years after diagnosis. In a matter of days Anto will have been diagnosed five years, and he is still in his job at BT. The only change in his condition of late is his full-time use of a wheelchair. Adjusting to it, no matter how much time you had preparing for it, was always going to be difficult for somebody so active.

"I don't think you can ever fully prepare yourself to be honest," he says.

"There is a transition phase you go through. I was starting to feel pain in the legs so the chair was introduced quietly - if I was walking and felt tired I wasn't to be afraid to use the chair.

"I had that time to transition. It doesn't make it easier, knowing that you are moving from one position to another when you are becoming reliant on a wheelchair to get around. It could be challenging and it takes you a while to realise that the condition is what the condition is.

"The wheelchair still allows me a measure of mobility. The alternative is to stay at home, so there is a balancing act and you have to weigh them up against each other."

And so he makes his calculations. And he goes out around Christmas time, and he watches Gaelic football at the home of his beloved St Paul's on Shaw's Road.

And he meets old friends for a drink and decides to go trekking around Europe in the wind, rain and baking sun, and follows through on it.

People see him do all this and they get a great lift. But he's already moved on to the next thing, planning a family holiday to Sorrento, Italy, next week.

"There is a lot of support in terms of people being very supportive of the work we are doing in the trust, very supportive of myself, Alison and the kids," he says.

"In terms of recognising living with the condition, it isn't easy, but we do get a lot of support. If people resonate with our story and they get a good vibe then grand. But that's not really what we are trying to achieve. We are trying to raise as much awareness as possible about the condition, and that is really the key thing for us, to help the research fund.

"If anything positive comes as a result, then great."

Visit www.determnd.com for more details.

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