'You have to try and make a life you're happy with' - MND patients
Could you give up talking for one day? The Irish Motor Neurone Disease Association is asking you to do just that to raise funds for those in need. Our reporter meets MND patients to hear why fundraising is vital
Published 11/02/2016 | 02:30
Padge Kelly can't cheer on his team on match days or call his pals up to arrange a night out. He can't call out if he sees someone he knows across the street or let out a whoop of laughter. Since being diagnosed with Motor Neurone Disease (MND), the 28-year-old has faced multiple challenges and can expect to spend the rest of his life in a wheelchair. But the worst thing is being robbed of his voice.
Speechless, lost for words, dumbstruck - it's a strange twist of our language that the inability to talk is often linked with something positive, a moment of great surprise. People like Padge, who have been stripped of their most basic means of communication, know it's quite a different feeling.
"It affects every aspect of your life," he explains, having painstakingly replied to questions via email. "You can't socialise properly because you can't chat. You can't laugh out loud because the muscles aren't there. My quality of life as a disabled person is great but losing my speech will affect that severely. It's very frustrating."
Padge was just 17 when he was diagnosed with the incurable neurological disease. The symptoms seemed innocuous enough at first. The sixth former noticed his handwriting had gotten messy and he wasn't as fast as he had been when he played football. One day when walking back to his home in Lucan, Dublin he found himself struggling to carry his gran's shopping.
"When I was diagnosed with MND I had no idea what it was," he says. "I was given a prognosis of three to five years. I was totally shocked. I felt grief, like I'd lost someone or something," he recalls.
He went from having a limp, to needing a crutch, to a wheelchair and being unable to move his arms or hands.
"I've felt fear, anger, sadness. I went through the whole process and it took a long time to get to acceptance. I'm lucky I lasted longer than the initial prognosis, it gave me the time to accept it."
If you've heard of MND it might be thanks to the fundraising efforts of the Ice Bucket Challenge two years ago, which saw everyone from Victoria Beckham to Kermit the Frog dousing themselves in cold water to raise awareness and much-needed cash to support those affected.
MND attacks the motor neurones, or nerves, in the brain and spinal cord so messages gradually stop reaching the muscles leading to weakness and wasting.
There are currently 351 people affected by the condition in Ireland. There's no known cause or cure and people of any age can be affected. The disease can affect how you walk, eat, drink and breathe. Between 80 and 95pc of those with MND will find their speech impacted in some way.
The signs that Padge's voice was becoming affected were as insidious as his other symptoms of MND. "It was little things like not being able to whistle and the way my voice sounded," says Padge. "There were times when I would be at a match or in the pub and friends wouldn't be able to hear me talking."
Today he can talk with effort, but it's hard to hear and understand him. Sometimes he uses a computer to articulate what he wants to say, "but it takes a long time to type a sentence and it has an English accent… no offence to the English," he adds dryly.
This month, he's asking people to put themselves in his place - for just a brief time - and take on a sponsored silence to raise funds for the Irish Motor Neurone Disease Association (IMNDA).
The association provides specialised services for Irish people affected by the debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by an MND nurse.
They've chosen February for the fundraiser since it's the month that's home to Valentine's Day. Imagine not being able to tell someone 'I love you?' the campaign asks. But it's not just the big expressions of emotion that are missed when you can't talk.
Esther Tracey (58) was diagnosed with MND in 2013. In October of that year, the mum of three from Portmarnock was out with her family when she noticed she was slightly slurring some of her words.
"I thought it might have been down to the fact that I had just come in from outside on a very cold night and my face was cold," she explains via email. Like Padge, progressive symptoms have now left Esther without speech, she's also unable to swallow.
The things she misses are things most of us take for granted - being able to lift the phone to talk to her youngest daughter who lives in the UK and the interaction she enjoyed before she had to leave her job in the financial services industry.
But Esther is determined to focus on the positives in her life, rather than what she has lost.
"I think it's important to note that for people like me with this condition one has to realise that you are still the same person as before," she says. "It's not a world of silence just because I can't speak. I know my family miss the sound of my voice, but I can still make myself heard."
She has a boogie board (similar to an etch-a-sketch) that she can write on, then erase. She uses the Predictable app on her iPad and iPhone which speaks the words she types, and she often finds body language an effective way to communicate. She managed to oversee two of her daughters' weddings since being diagnosed.
"We decided, as a family, we would focus on the here and now and not worry about what might or might not happen to me in the future. We would deal with whatever came our way as and when it happened," says Esther. "In short I was not going to make a career out of feeling sorry for myself."
A huge part of this attitude was assisted by the support of her medical team at Beaumont hospital and the help of the IMNDA. "It's a very valuable resource," she says. "The availability of dedicated MND nurses on call should I have any questions or concerns, in particular, is hugely positive and reassuring."
There's also support available for the families of people dealing with an MND diagnosis. "It's good just knowing there's someone there to talk to if we need it," says Esther's daughter Emma (33).
"Right from when mum was diagnosed there was a strong message of 'we'll look after you', from the INMDA and the whole medical team."
But it's her mum, she says, that has been inspirational. "She's an amazing person," she says. "We always knew she was strong though, she's our Mam."
Esther can't say 'I love you', but her family know. "There's more than one way to communicate and mum can say plenty with just a facial expression," says Emma. "She's lost her voice, but we haven't lost her, she's still here."
Padge is also focused on enjoying life one day at a time. MND is often dubbed the '1,000 day disease' as most people die within 1,000 days of diagnosis. Padge is now into his 11th year of living with the disease. He enjoys playing a Paralympic sport called boccia (a ball sport similar to bowls) and is ranked 64th in the world in his class. He has dreams of winning a European or world medal or making the cut for Tokyo 2020.
He's keen to finish his Open University degree, even though he's struggling to get government funding.
"My goals haven't changed much, I just have to approach them differently," he says. "You have to try and make a life you are happy with," he adds. "I used to think about a cure all the time but not really any more. It might come in the future but I'd rather live in the here and now."
To support IMNDA with a sponsored silence contact the association at email@example.com or on 1800403403. You can also get involved using the hashtag #Voice4MND or text MND to 50300 to donate €2