Joe Fitzgerald was diagnosed with motor neurone disease last year, but is determined to be optimistic about the future, writes Arlene Harris.

(Feelgood, 20th January 2012 Irish Examiner)

Staying positive

STEPHEN HAWKING is an inspiration to us all. He will forever be praised for his brilliant mind and extensive contributions to the fields of cosmology and quantum gravity. But he will also be hailed for his longevity at the hands of a wasting neurological condition — a form of motor neurone disease (MND) called Amyotrophic lateral sclerosis. Despite being paralysed for most of his life, he has outsmarted medical science by celebrating his 70th birthday earlier this month and proving that sufferers of MND can live longer than the expected 10 years after diagnosis. The condition has been very much in the news recently as sadly Corkman John McCarthy of MAD passed away last week after suffering with MND for many years — he was 61. HRB scientist, Professor Orla Hardiman of Trinity College and Beaumont Hospital is an expert on the illness and says although it is relatively rare (there are currently around 300 sufferers in Ireland) and predominantly affects people in their mid-60s, it can strike at any time.

“MND can affect anyone of European extraction with the peak age of onset being 65,” she explains.

“However, it can happen to younger people and although 70% of sufferers don’t survive longer than three years, a further 30% do better and the sooner it is diagnosed, the quicker they can begin taking medication to try to slow down the process.

“As with most neurodegenerative diseases, a diagnosis can often mean the final frontier but there is a lot of medical and scientific research being undertaken as we speak, both in Europe, Australia and the US to try to understand this disease.

“The international MND consortium is made up of a lot of extremely able people so there is huge ground for optimism in the future.”

Joe Fitzgerald has also been blessed with an optimistic nature and despite being diagnosed with MND last May at the age of 47 — he is determined to remain positive and hopeful for his future.

“I was on holiday in France in August 2010, when I noticed my hand shaking while I was holding a glass,” says the Dublin man. “Initially I put it down to the fact that I taught boxing to youngsters as its not uncommon for boxers to get nerve damage. But I decided to get it checked out when I got back home to be on the safe side. “After an x-ray came back clear, my doctor asked me to have some tests done as I seemed to be losing muscle tone but I put it on the long finger until one day I couldn’t put the key in the ignition because my hand was shaking so much.” That was the trigger which sent Joe (the former lead vocalist of D11 Runners) back to his doctor who referred him to a neurologist in the Mater Hospital. After a series of tests, his worst fears were confirmed — and in May 2011, the father of two was diagnosed with MND.

“When my symptoms started to get worse, I looked them up online and everything pointed to the fact that I had MND,” recalls Joe. “Initially I was devastated and so were Jackie and the kids (aged 15 and 18) but I knew I had to get on with things. Nothing was going to get better by getting upset, so it was up to me to put my faith in God and try to find something positive for my future.

“I am a singer and songwriter and when times were good, I put together a programme teaching kids about the negative aspects of drugs and alcohol and visited schools in the Finglas, Ballyfermot area. When the recession stopped funding for that, I began coaching

boxing to teenagers. “But when I got sick that had to stop as I am physically unable to do much with my hands anymore — I guess you could say that

I’m an invalid. “So I decided to put my energies elsewhere and although I find it difficult to move my upper body, I go to the gym every day to work on my legs and a couple of times a week I go to the pool and get my arms moving with resistance pads. I have also kept up the singing and last Christmas I released a song on iTunes called Hey Mama its Christmas and 10% of the proceeds went to the Irish Motor Neurone Disease Association.”

Despite his physical condition, Joe is refusing to be beaten and will remain active and positive about the future. “Advances in medical “Advances in medical science happen all the time and for all I know, there is a cure for MND being formulated right this minute,” he says. “I am currently on a new clinical trial (with the drug Dexpramipexole) and although it is early

days, I am optimistic about the results.

“My years in boxing have taught me to never give up fighting until the fight is over and I am determined to keep that in mind. Everyone is going to check out at some stage but until the inevitable something takes your life, don’t let it take your day — every day

we are alive is worth celebrating and I intend to do just that for the foreseeable future.”

● Joe Fitzgerald’s latest music compilation After the Pain can be viewed on You Tube and will soon be available for download on iTunes.