FORMER Antrim football captain Anto Finnegan has spoken for the first time since being diagnosed with motor neurone disease (MND).

The 40-year-old was first made aware he had the life-shortening illness in August 2012, but has now gone public to highlight what is a relatively unknown condition.

Anto, noted for his leadership and courage on the football field, is using those same qualities to launch the deterMND (Anto Finnegan) Trust to try and raise awareness and help fund research into the condition.

At a press gathering at the Balmoral Hotel on Tuesday, the West Belfast father-of-two was joined by former club and county teammates, former Antrim manager Brian White and Antrim Chairman Jim Murray as he spoke frankly about his diagnosis, the condition and how it has affected his life.

Finnegan – a winner of three Antrim Senior Championship medals with his club St Paul’s in the 1990s – had been attending hospital for shoulder problems he thought were a consequence of his football career.

However, upon one of these visits, a doctor recognised some signs of MND and sent him for tests that came back positive.

“You can probably guess it took the legs out from under us,” he recalls of the day he was diagnosed. “Even now, it’s taken us a very long time to come to terms with it.

“It’s probably disbelief more than anything. Once I started reading into it and understanding what the actual standard prognosis is – two to five years – and how the condition affects people, it was very hard to take.

“In saying that, once people started to know about it, friends and family, the support mechanisms that were in place were a great help to us.

“I would say from a family point of view we are still coming to terms with it and we are going to manage it going forward.”

Although some high-profile figures – including the late Celtic great Jimmy Johnstone and ex-Rangers and Netherlands player Fernando Ricksen – have been diagnosed with MND, many remain unaware of the complexities of the condition.

MND is a rare condition whereby parts of the nervous system become damaged causing progressive weakness that affects muscle activity including gripping, walking, speaking, swallowing and breathing.

Life expectancy for approximately half the cases is three to four years, although some can live for much longer. For example, Professor Stephen Hawking has lived with MND for almost 50 years.

“My wife Allison and I made a conscious decision early on that we wanted to do something positive on the back of it rather than sit at home and accept our fate,” added the BT employee.

“That’s where we are now with setting up the Trust and the banner of ‘deterMND’. I would say we decided that very early on – even when we were trying to come to terms with the diagnosis.

“When we started to read up on the condition and we were telling people it was motor neurone disease, people were going, ‘Oh, okay.’ You could tell that people didn’t know about the condition, how it affects you, how it affects your physical being or how it affects your life.

“Very early on, we realised there is little awareness about this condition. It affects two in 1,000 people so it doesn’t have the same recognition as other conditions.”

Announcing his condition to the public is a brave move for the man who captained Antrim to their first Championship win in 18 years back in 2000 when the Saffrons overcame Down.

Stephen Thompson, Chairman of the Northern Ireland branch of the MND Association was also present on Tuesday and he commended the courage of Anto for not only speaking out, but for the fundraising drive that will help his organisation in their three main functions: funding research, raising awareness and helping those suffering with the condition.

“It’s very brave of Anto to come out and do what he is doing,” said Stephen. “Approximately 120 people have it here  and out of that, I would say only about a dozen have made it known. It’s a secretive disease so what this association is trying to do is make people more aware of it.

“There are two things certain about motor neurone disease – we don’t know what causes it and we can’t cure it.

“It’s not something we would quantify as a hereditary disease. In some cases it falls along family lines, but that’s less than 15 per cent. In most cases it just appears.”

Not knowing how or why it appeared is frustrating for Anto, who is determined to help others in his position.

“Obviously there is a frustration with this condition in that you don’t know why it happens and there is no cure,” he added.

“So for me it’s about doing what I can in my position to raise that awareness, raise whatever funds can be raised for research and hopefully then it can lead to a quicker prognosis for people and a resolution to the condition where people can get the right treatment.”

That fundraising drive begins this Saturday at St Paul’s when his former club hosts an over-35s seven-a-side football tournament that will draw former teammates and opponents from throughout Antrim and beyond. (See Belfast Sport for full details.)

There are also several other events planned in the early months of 2014, including a Valentine’s Day Ball at the Europa Hotel, a Belfast to Dublin cycle event, a golf day and a Gaelic football game to be held at Ravenhill, to name but a few.

“We have engaged with Jim Murray [Antrim Chairman] who has been very supportive,” said Anto of this weekend’s event.

“My local club, Brian [White, ex-manager of Antrim] and others who I have played alongside with at club and county – nobody has closed the door. Ulster Council – everybody has been really supportive.

“I have always said that, to me, the GAA is a second family and has been throughout my playing career. I always felt really comfortable within the GAA and it’s proving that again now. It has proved it in the past with other members of the GAA and this just shows the great ethos of the GAA – the support for their members and I really appreciate that.”

That support is needed more now than ever as Anto admits it has been tough adjusting to life with MND.

Not being able to do certain tasks he took for granted is something that rankles for an athlete who spent so long at the peak of fitness and at the top of his game. But Anto says this has been balanced out by the love and support of friends and family who have been a constant source of strength over the past 15 months.

“The one thing I really find difficult is that I have always been a really independent person, especially at home,” he said.

“Doing simple things like DIY, hanging doors, laying floors, painting. Not being able to do all that has been difficult, having to rely on other people whereas it wasn’t the case in the past – that’s the one thing I find most difficult.

“The other side of that is that the support you get from people who are prepared to step in and help you do things you can’t do for yourself anymore is really humbling.”