Donegal communities have been hailed for their ‘extraordinary’ efforts supporting people with Motor Neurone Disease.
There are currently 22 people in Donegal living with Motor Neurone Disease, according to the Irish Motor Neurone Disease Association (IMNDA).
Speaking at the recent launch of the “Climb Errigal Together” which takes place on Saturday, April 2nd, to raise funds for the Irish Motor Neurone Association and Pieta, Eithne Cawley, who is one of four Motor Neurone Disease Nurse Specialists, also revealed there are currently 400 people in Ireland living with Motor Neurone Disease.
The latest statistics show that one person is diagnosed every three days in Ireland with Motor Neurone Disease.
“To put those figures in context, we now know with all the research that one person is diagnosed every three days with MND, so it’s probably a little bit more common than we think it is,” she added.
“IMNDA really isn’t that old. Believe it or not, the organisation was only founded in 1985 by a very smart lady, Eithne Frost. Her husband was diagnosed with Motor Neurone Disease the year before. At the time in Ireland, and certainly, in Dublin, there was only a handful of neurologists – probably about five or six.
“She was brought into a room. She was only in her late forties and her husband was only 49. Her husband wasn’t allowed into the room. She was told her husband had MND, she wasn’t allowed to tell him, and she was told just to go home. That’s where we were that time with the diagnosis of MMD.”
Things have changed for the better over the last 37 years, the regional nurse said.
“We’ve come a long, long way since. We have several more neurologists in Ireland and I remember when Professor Hardiman came from Boston and of course her interest always lay with MND. We know now that she has a huge team of people working alongside her in Trinity.
“I know when people hear of MND, it always gets the worst press, it’s just awful. But there’s so much we can do to help. We try and focus on what we can do to help, rather than what we can’t do.”
She continued: “I’m one of four nurses who cover the country, and I cover eight counties – Sligo, Leitrim, Donegal, Roscommon, Monaghan, Louth. Cavan and Kildare. I used to cover Dublin until Louise came on board on the back of Fr Tony Coote who did the walk from Donegal to Cork. Historically, there was only one of us covering the country, so thankfully there are more nurses on board.”
“This climb will raise vital funds for people like local man Stephen O’Donnell with MND. Every single penny that is raised is accounted for. The word ‘together’ was used a few times tonight. This is all about being together. I’m useless as a nurse on my own, absolutely useless. I require a team of people to work with, as I have in Donegal. There’s huge support.”
“We know there are about 400 people living with the disease at any one time in Ireland. Our lifetime risk of developing the disease is the same as anybody else. So, just because you have a family member with MND doesn’t mean you’re more at risk. We do know that in 10 to 15 per cent of people with the disease, it is genetic. We know there are four different types of MND. I know that this is going to sound clichéd, but no two people are the same.”
It has been established that about 50 per cent of people with MND experience cognitive and behavioural change.
“The other important thing to say is that the IMNDA supports research, and that’s pivotal. When people think about research, they often think about trials and cures. But research is a little more than that. It’s about epidemiology and looking at the demographics of MND in the country,” she explained.
“What’s most important for people with MND is support. It’s not always about being strong, it’s about being human. And we’re all in this together. It just doesn’t affect the person diagnosed, it affects the whole family, friends, neighbourhoods and places like Donegal where communities come together. It’s so important.”
Ms Cawley stressed that Motor Neurone Disease has a ripple effect.
“It’s a cruel disease, but we have many things to be optimistic about. No matter what we do, I’m in the shadows in Donegal and have always been welcomed with open arms. In the darkest of corners, the light does shine for people for some reason or another. It’s just extraordinary what you guys as a community are doing,” she added.
“I don’t usually attend these functions because it’s usually fundraising. But I’m always, always in awe at what people do. Drink Tea For MND is a big fundraising event for us every year in May and June. Last year during the pandemic, we raised the most funds ever when we took in €1 million. That was raised by the Irish people. 80 per cent of our funds come from the Irish people. We get 20 per cent of funding from the Irish government.”
To register to take part in “Climb Errigal Together”, follow the link below: https://climberrigaltogether.com/
