Sunday 18 November 2018

The real winners of the ice-bucket challenge...

Meet three people whose lives have been affected by Motor Neuron Disease.

Former US president George W Bush takes the challenge with some help from his wife Laura
Former US president George W Bush takes the challenge with some help from his wife Laura
Mark Attride
Actor Will Smith did the ice bucket challenge with some help from his daughter Willow
Facebook founder Mark Zuckerberg took braved the bucket for charity
Padge Kelly, who has Motor Neurone Disease, with his mother Joan
RTE news reader Sharon Ní Bheoláin gets drenched outside the studio
Bill Gates' ice bucket challenge
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Paul Lannon, who has MND with his wife Sandra at home in Dunleer

Aoife Stuart Madge

You can't log onto Facebook or Twitter these days without seeing someone tipping a bucket of freezing cold water on themselves in the name of charity.

Everyone from Victoria Beckham to George W Bush and Bill Gates have faced an icy soaking to raise money for ALS (amyotrophic lateral sclerosis, a form of motor neurone disease) in the US, and for the Motor Neurone Disease Association in the UK and Ireland. So far, #icebucketchallenge - which went viral after several US athletes and celebrities took part in the stunt - has raised a cool €1.1 million for the Irish Motor Neurone Disease Association (IMNDA).

Padge Kelly, who has Motor Neurone Disease, with his mother Joan
Padge Kelly, who has Motor Neurone Disease, with his mother Joan
Former US president George W Bush takes the challenge with some help from his wife Laura

To find out more about where that money goes, we meet three Irish people living with the disease.

"I'm determined to live a normal life for the time I have left"

Patrick (Padge) Kelly, 27, from Dublin, was just 17 when he was diagnosed with motor neurone disease.

Padge was in sixth year at school in 2003 when he first noticed his handwriting getting very messy. Soon, even carrying his school bag became difficult, and he struggled to play football. "I couldn't run as fast or kick the ball as far, and my coordination was way off," he says.

After a referral to Dr Ray Murphy, a former consultant neurologist at Tallaght Hospital, the family got the devastating news that Padge had MND and might only have a few years to live. "My first reaction was one of complete shock," says Padge. "It's hard to comprehend that your body is going to waste away in front of your eyes and there is nothing anyone can do about it."

Actor Will Smith did the ice bucket challenge with some help from his daughter Willow
Actor Will Smith did the ice bucket challenge with some help from his daughter Willow

Immediately after the diagnosis, Padge's mum Joan took him on holiday to Almeria in Spain while the family came to terms with the blow. "I remember Padge telling us, 'Mam, when we get back, I just want everything to be as normal as possible'," says Joan.

But as the disease began to ravage Padge's body, living a normal life became increasingly difficult. A year after his diagnosis, he needed a crutch to walk; two years later, he was in a wheelchair, and three years on, his speech was affected. "Physically, it affects every part of my body except my eyes. Mentally, it was tough in the beginning. I was upset, angry and disillusioned," says Padge.

In the 10 years since his diagnosis, Padge has kept himself busy: enrolling in an online natural science course and playing boccia - a Paralympic sport, similar to bowls.

"I have to set goals that I work towards. If I didn't, I would go crazy with boredom," he says.

Mark Attride
Mark Attride
Facebook founder Mark Zuckerberg took braved the bucket for charity

Joan - who acts as a full-time carer to her son, adds: "He's more energetic than most 27-year-olds I know. He's stayed positive and always has a smile on his face."

Padge has even taken part in his own ice-bucket challenge. "The money raised through the challenge is great, but for me, the awareness is far more important. Hopefully it creates a lasting legacy that leads to a cure," he says.

"I miss cycling and going to the pub for a pint"

Mark Attride, 53, from Carlow, has early stages of bulbar presentation motor neurone disease.

In July 2013, college lecturer Mark had just completed a 320 kilometre cycle from Carlow to Keel in Achill. But while out celebrating the following evening, he noticed his speech was slurring. "I had a tendency to slur a few words after just a couple of pints so I put it down to tiredness," says Mark.

Paul Lannon, who has MND with his wife Sandra at home in Dunleer
Paul Lannon, who has MND with his wife Sandra at home in Dunleer
RTE news reader Sharon Ní Bheoláin gets drenched outside the studio

Months later, he was diagnosed with early stages of bulbar presentation MND. "You ask yourself 'Why me?' I always thought I was infallible healthwise," he says.

MND immediately affected Mark's throat and chest. As a college lecturer, he relied on his voice for his job, so when the disease started attacking his ability to talk, he had to retire.

"My voice has deteriorated to a stage where now I use an iPad to communicate."

The disease has also meant Mark has trouble swallowing. "I have had to change my diet substantially, resorting to soups and liquidised foods. I will shortly have to take food directly into the stomach through a peg. Also, my breathing is badly impaired, and I have bouts of excessive yawning. You get extremely emotional with my type of MND."

Mark adds: "Mentally, I have my ups and downs. Early afternoons I find more difficult.

Bill Gates' ice bucket challenge
Bill Gates' ice bucket challenge

"It's best to keep your mind occupied and have a full schedule of things to do, but I'm worried what I will be able to do this time next year."

Of his former life, it's the simple things Mark misses most: "I miss the cycling and going out to a pub for a pint. But there is a lot to be thankful for, and obviously it gives you a whole new perspective on life."

As far as the ice-bucket challenge goes, Mark has three words: "Bring it on! Anything that might try and fund a cure for this terrible debilitating illness, I'd welcome."

 

"I miss hugging my wife the way that I used to"

Four years ago, Paul Lannon, 44, from Dunleer, Co Louth was diagnosed with motor neurone disease, a month before his 41st birthday.

Paul's symptoms started in the summer of 2010 when he noticed pain in his index finger; then he started dropping things. After a referral to Professor Orla Hardiman, consultant neurologist at the National Neuroscience Centre of Ireland at Beaumont Hospital, he was diagnosed with early onset of upper extremity MND, and told he might only have a year to live.

"I was in shock, and my wife Sandra and I left the hospital in a complete daze. It wasn't until we got home that the tears started. We went through every emotion, from sadness to frustration to anger," says Paul.

Month on month, Paul's wrists and arms got weaker. He has a carer who makes his breakfast and helps him get dressed, then Sandra looks after him for the rest of the day.

"I can no longer dress myself or shower on my own. I can't cut tough foods like steak or bacon on my own. Even basic things, like opening the fridge, is a struggle," says Paul.

"There are days when I kick things across the floor in frustration, and there are days when Sandra gets very upset worrying about the future, as we don't know how long I've got. But we married 15 years ago for better or worse," says Paul. "She is my soul-mate, my best friend, my wife and, unfortunately, now she's also my carer."

It's a hard adjustment for anyone, let alone a former fitness fanatic who could once lift 70 kilos in each hand. "I grew up in a pub, my dad was a publican, so I could lift a keg of beer in each hand. Now, I need two hands just to lift the kettle," says Paul. "What I miss most is being able to hug Sandra the way I used to. She used to tell me that she felt so safe and protected in my arms because I was such a strong guy."

With the future uncertain, Paul is determined to make the time he has left count. "I want to create memories, not just for me, but for the people around me to look back on. Sandra and I went to California for a three-week holiday a year after my diagnosis. Those are the things that create the memories and the photographs, so I have something to look back on when I'm in a wheelchair or can't speak."

While the money raised through the ice-bucket challenge has been amazing, Paul is thrilled that the campaign has put a spotlight on the disease. "The idea of the challenge is that when the ice hits you and you can't catch your breath, that's supposed to try and replicate what it is like for an MND patient who have it in the throat and chest.

"You are constantly trying to catch your breath. The other thing is lifting the bucket - people with MND can't lift a bucket over their head. It has done so much to educate people," adds Paul.

Mark is hosting a fundraising event on October 15 called 'Legends with Miriam', check Facebook (facebook.com/LegendsWithMiriamOCallaghan) for more details or visit .mycharity.ie/event/mark_attrides_event For more information on MND, visit imnda.ie

Irish Independent

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