Portroe man’s MND journey
Hardworking and fiercely independent all his life, asking for help does not come easy to Kevin Madden.
But after recently being diagnosed with motor neurone disease, the Portroe man needs all the help he can get just to live in some kind of comfort. Kevin (51), fourth-eldest in a local family of seven, received the dreaded diagnosis last December. He had been in and out of Limerick hospital many times in the space of three years before that; he and his family believe motor neurone disease (MND) should have been picked up on by the medical professionals there long before December.
“I went in originally with pains up the back of my head, pains in the neck,” Kevin said. “I ended up going down a different path completely but it still took three years to diagnose it.”
He went to a back specialist in Ennis and this was the first person to light on the likelihood that Kevin had MND. He referred the Portroe man to a neurologist. A series of tests over the course of three months later, and everything else but MND was ruled out.
Obviously being diagnosed with the incurable disease was hard to take, but it did not come as a complete shock to Kevin because he had known for some time that something was not right, especially when he started to lose the power in left arm.
“It was always in the back of my mind because I'd heard it being mentioned a couple of times,” he said of motor neurone disease. “I kind of knew all the symptoms.”
‘IT WEARS YOU OUT’
Kevin spent 27 years living between Dublin and Kildare working as a carpenter. He spent long hours working on building sites, paying a mortgage and raising his three children - Chloe (now 29), Hayley (25) and Colin (19).
He moved back to his native Portroe around five years ago, where he now lives in Drom Slinne with his partner Caroline. He continued working part-time in carpentry, but it was shortly after his move home that he realised he would have to give up working.
“It was grand, just tipping away,” Kevin said of working back around his local area. “But a couple of times I'd fallen over on the job as well. That's one of the signs - you lose muscles in your legs as well. I hit my head a few times, so knew I'd have to finish up because I just couldn't do any more.”
As it turned out, however, Kevin continued doing jobs for people right the way up to November last, a month before his diagnosis. Work is no longer an option, as he is now battling symptoms of the debilitating disease on a daily basis.
“I'm up most mornings, three or four o'clock, with cramps. They put me on medication a couple of weeks ago for that but that's wearing off now and I'm having to take more and more of it.
“I'm even getting cramps in the soles of my feet, fasciculation [muscle twitching], stomach cramps, chest cramps; every inch of your body is cramping - that's what you're going through.
“Then there's the tiredness part of it. I could go to bed maybe two or three times a day for two hours... It wears you out.”
ONLINE FUNDRAISER
Kevin and his family recently decided to set up an online GoFundMe fundraiser. One of the reasons was to try and purchase a new car; Caroline has a small Fiesta that is difficult for Kevin to get in and out of. In addition to a wide range of medication, his treatment includes visits to Beaumont Hospital every six weeks, as well as Limerick for speech therapy and Nenagh for physiotherapy, in addition to further trips to his local GP. But they are also raising funds in the hope that Kevin might be able to avail of advanced treatments that are being made overseas in the battle against motor neurone disease.
“We're researching all the time,” his sister Martha said. “Before we went to Beaumont two weeks ago, we found this information about this new drug in America that had a 55% success rate.”
She said they were advised by Beaumont's Professor Orla Hardiman, who specialises in MND, that only patients with a certain gene can avail of this treatment. No one in Ireland has ever been treated with it before.
She said the treatment is available at a clinic in Miami and it has helped patients to regain control of their limbs. It is very expensive - it could cost as much as €40,000 just for three treatments - but Kevin is willing to try anything that might improve his situation.
A MORE COMMON CONDITION
An incurable condition, motor neurone disease for years affected around 400 people in Ireland at a given time. Now there are around 450 cases, and Martha said her family have been struck by the indiscriminate prevalance of MND.
“When we went to Beaumont for the last appointment, there were six new cases, which they would never have seen on a day,” she said, adding that those concerned were “fairly young people”.
Kevin remarked on meeting someone that looked familiar on another visit to Beaumont. He spoke to the man, and realised that he used to train Kevin years ago when he played hurling in Kildare.
“He had it as well,” Kevin exclaimed. “It's hitting seriously fit people. He was a referee, a county hurler and county footballer, never drank or smoked in all his life. It hits these kinds of people.”
For Kevin, one of the next challenges he faces is voice-banking, whereby his voice will be recorded to create a personal synthetic computerised voice for use with speech-generating communication devices.
“His voice isn't affected yet,” Caroline explained. “There's two types of MND - the bulbar onset, which starts in the mouth, and the limb onset, which starts in the limbs. Kevin's has started with the limbs so we're hoping that his voice stays good for a long time yet.”
Caroline also spoke of needing a house with disabled access for her partner. They had been hoping for one of the new houses built by Tipperary Co Council in Portroe; had Kevin's diagnosis been made back in September 2022 - which is when she said it should have been - Caroline believes he would have a new house there now.
“The most important thing is that he is made comfortable going forward,” Martha said. “That's number 1, so he hasn't to worry about any of this stuff.”
All three took the opportunity to thank everyone that has supported Kevin on his MND journey so far. They reserved a special word of praise for Portroe's Lisa Gleeson, a “phenomenal” source of help.
They are planning a fundraising event in the near future, possibly involving the GAA, as Kevin loves hurling, having hurled for Port himself for 14 years. For the moment, they are hoping that people will become aware of Kevin's situation and continue making donations through GoFundMe. Kevin wanted to warmly thank everyone who has already donated, no matter how big or small the amount, saying he enjoys reading through the names of contributors. “I don't even know half of them,” he commented.
The page can be found by searching for ‘Kevin's MND Journey’ on gofundme.com.