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INTERVIEW The long road for Motor Neurone Disease

Living

 

Michelle Forde and her father, George Smith, who found out he had Motor Neurone Disease a year ago.
DEVASTATING
?Michelle Forde and her father, George Smith, who found out he had Motor Neurone Disease a year ago.?Pic: Elizabeth Togher

The long road for Motor Neurone Disease


The Ice Bucket Challenge is bringing global attention to Motor Neurone Disease. George Smith from The Neale suffers from the condition. Here, his daughter tells his heartbreaking story and describes her family’s fundraising efforts.

Neill O'Neill

September last year, George Smith from The Neale was diagnosed with Motor Neurone Disease (MND). His daughter Michelle Forde describes it as the ‘most devastating day in her family’s life’. Her family, several of whom live in their native Armagh, did not know much about the condition, apart from being aware of a friend’s father in a neighbouring village who had passed away as a result of it.  
However, as the months progressed it seemed like everyone the family met knew or loved someone who had the condition or had been affected by MND.
At present, there are 351 people in the republic of Ireland who suffer with MND. For every one of these 351 people, there are families, friends, neighbours and work colleagues that will also be affected, Michelle states.
“They will all be aware that once that diagnosis arrives, there is no turning back, no cure. Devastatingly, there is no hope,” Michelle said. “It is, as my dad calls it, a ‘death sentence.’
“My dad is 64 years old. He worked every day until he went into hospital to have some tests. From the day of his diagnosis he had to give up his work and everyday things like driving. He also had to accept that there was no cure for his illness.”
The Smith family are originally from Armagh. George was born in ‘The Orchard County’ in 1950 and comes from a family of six sisters and two brothers. In 1970, he married Angela, a native of Tipperary, and they went on to have five children, Stephen, Kevin, Niall, Jacinta (RIP) and Michelle.
The family lived beside the Navan Fort, an historical area in Armagh, until 2000, when George, Angela and their youngest daughter, Michelle, moved to The Neale. Older and with their own families, Michelle’s brothers remained in Armagh.
“Dad loves the west of Ireland and dreamt of retiring here. He worked for John Madden and Sons in Ballinrobe. He loved his job and made friends for life,” she explains.
There is no previous history of Motor Neurone Disease in Michelle’s family. However, some research suggests links to Alzheimer’s Disease and Parkinson’s Disease, both of which her grandfather suffered from.
“I wonder, in the future, if MND will come knocking on my door? Or that of my siblings? Or will it affect our children in the future? With this in mind we need to do something – and the time is now. We need more research, more funds, we need a cure,” she says poignantly.

Life changing
A former Chairman of the Road Bowling Northern Ireland Branch, Bol Chumann Ard Mhacha, George holds a Hall of Fame award for the sport. Michelle says that her father’s passion for road bowling brought him to Boston, Italy, The Netherlands, London and all across Ireland. He also helped to organise the first Road Bowling World Championships to be held in Northern Ireland – in Armagh in 1998.
“He made so many friends and introduced his children to the sport from an early age,” she said. “Dad is a very smart, outgoing man. He is passionate about everything he does. He would do anything for anyone, no matter what time or work went into it.
“In 2007, my brother Niall won his first All-Ireland after many Ulster titles, and dad was a very proud man on that road that day. My son, Darragh, won a junior title for Mayo in 2010 in Waterford at the age of eight. Dad was at his side for every shot in the score.”
The day he gave up work after the diagnosis was one of the most devastating in George’s life. From the young age of 17, he had never ever been out of work. He had also built his dream home with thoughts of retirement and enjoying life in The Neale.
“Dad knew something was wrong, but thought he had taken a slight stroke, he thought the weakness in his arm and leg on one side was definitely a stroke, but when his consultant and friend, Professor O’Donnell in University College Hospital Galway, examined him, he saw little pulses or jumps under his skin and referred dad to Neurology for immediate tests. All along we had no idea what was coming and then the consultant sat on the bed and said: ‘George, I’m sorry to say you have something called Motor Neurone Disease’.
“He asked what that meant, only to be told: ‘It’s not good George. You will from this day never go back to work and the disease is a terminal one’. In the room that day time stood still, the walls seemed to close in around us. Myself and Mum were there with dad, and we held each other and cried. Different feelings hit us, fear, grief, sadness, anxiety, everything imaginable.”
In less than a year since his diagnosis, George has experienced muscle wastage everywhere, most significantly in his upper torso and diaphragm, meaning he needs Morphine, sedatives and ventilation to control his breathing.  
“The average life expectancy for Motor Neurone Disease patients is three to five years from onset of symptoms, and the tests suggest that dad already has the disease in his system for three years,” Michelle said.
“We are hopeful that methods being used are going to continue to help his breathing, and we are so thankful for everyday we have him in our lives. He is our dad, our hero.”

Novel fundraiser
“My brother Stephen came up with the idea to do a sponsored walk and give the funds that we raise to both the Motor Neurone Disease Association Northern Ireland and the Irish Motor Neurone Disease Association. We decided that because we reside in Mayo and my brothers reside in Armagh, we would walk between the two – 165 miles – and call it ‘Home to Home,” she explained.
The walk will take four days, from October 2 to 5. Yes, the walk will be hard, and yes, it will be tiring, but it will make the Smiths and those who complete the walk with them feel like they are doing something to help. They will be raising much-needed funds and awareness for MND.
“The walk will not be one of the hardest things we will ever have to endure, that will be watching someone we love so much, admire and look up to, deteriorate before our eyes, knowing there is not one thing we can do about it. Who knows which family out there will be affected next by this?” Michelle says, filled with emotion.
On the first night of the walk, the group will stop in Cavan, where accommodation has been kindly sponsored by the Cavan Crystal Hotel. The walkers will stay in Roscommon on the second night, in accommodation sponsored by Hannon’s Hotel; Castlerea on the third night, in accommodation sponsored by Tully’s Hotel; and in Cong on the last night, in accommodation sponsored by The Lodge at Ashford Castle.  
“We really can’t thank everyone enough,” adds Michelle, “particularly those participating and each of the hotels, who are being so generous.”
Joining Michelle and her siblings on the walk are Frances McGeown, Nathan Preshur, Assumpta Forde, Sharon Smith, Amanda McParland and Ciaran and Nicola Donnelly.
Donations are now being accepted online, and further fundraising events will follow in the weeks ahead, and in each town they pass through.

To donate online go to www.mycharity.ie/event/smith_home_to_home, or in the UK or Northern Ireland, go to www.justgiving.com/StephenSmith160.

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