First Person with Anto Finnegan
THE 40-year-old is a former captain of the Antrim GAA football team, who played for his county for 11 years. Diagnosed with Motor Neurone Disease in 2012, the father-of-two set up an organisation called deterMND to create awareness of the disease and help raise funds for research
I wasn’t really aware of the first symptoms of Motor Neurone Disease (MND). In 2009, I had noticed pains in my hands and twitching in my arms, but I put them down to all the running and cycling I’d been doing. My doctor, however, referred me to the neurology department at the Royal Victoria Hospital to get things checked out; over the course of two years I was back and forward for tests and they eventually diagnosed me with MND.
Normally your brain sends signals to your muscles and they react, but with MND there’s a block where the signal doesn’t get through. Eventually the muscle wastes away and dies and that can lead to total immobility for a person.
The standard prognosis after diagnosis is between two and five years, but everybody is different in how it affects them. I face it with a steely resolve and resolve to keep it at bay for as long as possible.
There’s no cure and the only medically-accepted drug that is available is called an ‘end of life’ drug.
With many other conditions there’s action you can take to address it but not with MND, though that’s not to say that you can’t still keep healthy, with proper eating and living.
At the minute I have difficulty with movement within my arms which, of course, you use for everything on a day-to-day basis — but I am still working for BT, still coaching the under-14s at St Paul’s GAA club, still walking and still exercising.
My diagnosis was a shock but the thing that struck me and my wife Alison was the lack of knowledge that people have about MND. Some initially said they hoped I would get better soon, not understanding the significance of the disease, that it’s terminal.
We knew very little ourselves but once a label is put on a condition you very quickly educate yourself about what it is, how it will affect you and how you can change your lifestyle.
We decided to set up our own organisation, the deterMND Trust, and the key thing for us is to generate awareness and to inspire people to support the cause.
We also wanted to raise money for the MND Association for patient care and research because funding from the government isn’t exactly huge. We’ve run a GAA tournament, we’ve had Christmas fundraisers and we organised a Valentine’s Ball at the Europa.
We have 70 people doing the Belfast Marathon for us and last weekend 125 people cycled from Casement Park in Belfast to Croke Park in Dublin. That was 107 miles for some and 117 for others who took wrong turns!
We had a whole range of people taking part, from experienced cyclists to some who had hardly been on a bike since they bought one with their Confirmation money.
It was very humbling for me and Alison to be there at the start to see them all off on their journey and then we got down to Dublin to greet them at the end.
But the generosity is typical of the amazing backing we have had from people. They just can’t do enough for us. I’m not sure just how much we have raised so far but every little bit helps.
I take every day as it comes with MND. It’s not as if I’m just waiting on the clock stopping. But it is classed as a terminal condition and eventually what happens to most people is that it affects their breathing muscles, so that’s when they get to the end, I suppose.
However, it’s a progressive condition and I am hoping it’s going to be a very slow progression. But you just don’t know.
For more information about Motor Neurone Disease and about Anto’s campaign, visit the website at www.determnd.com
How the disease takes hold ...
* Motor Neurone Disease was first described by French neurologist Jean-Martin Charcot in 1874
* The disease affects the nerve cells in the brain and the spine which control the ability to walk and talk, although it does not |affect touch, taste, sight, smell or hearing. In the majority of cases, the intellect remains unaffected
* It affects around 5,000 people in the UK and average life expectancy is just two to five years from symptom onset
* The disease can affect adults at any age but most sufferers are over the age of 40, with the highest incidence in the 50-70 age range. Men are affected slightly more often than women.
* Symptoms include stumbling and balance problems, difficulty chewing, and swallowing and breathing difficulties
Belfast Telegraph Digital