Motor neuron disease: ‘It doesn’t affect just me, it affects the whole family’

Two years ago Eileen Butler started to notice her voice was changing. Words were beginning to sound different; her mouth wasn’t moving in the same way it normally did. Nobody else could hear it, but she knew something was wrong.

The 53-year-old mother-of-four recently had teeth extracted, and thought that could be the reason why her speech had changed. After undergoing tests, and ruling out other neurological conditions, she was eventually diagnosed with motor neuron disease (MND) last year.

MND is a rare condition that progressively damages parts of the nervous system. It often leads to muscle weakness and visible wasting.

“When I was first diagnosed, I didn’t know how fast this was going to happen. It was very frightening. You start thinking of the kids and wondering if I’ll be around when they finish school and college,” she said.

Sitting in a bright yellow chair in her sittingroom in Co Meath, her crochet hooks are placed beside her. She uses them regularly to make shawls and blankets. She previously taught crochet to students, and had an active YouTube page, but Ms Butler said her voice had deteriorated significantly since then and she was no longer able to do these things that gave her so much joy.

Speaking with the assistance of an app on her phone, Ms Butler said she knew nothing about MND prior to her diagnosis, other than the fact former RTÉ journalist Charlie Bird had it.

“We went out for a walk in Glendalough and we saw nobody until we were coming down and we saw a couple. It wasn’t until we had gone past that I realised it was Charlie Bird and his wife. I told my two [children] the disease he had and he probably wouldn’t be around in two years’ time. And then in May of last year, I had to tell them I had the same disease.”

In the beginning, she said, she was quite angry about her diagnosis. She couldn’t understand it.

“I was wondering why this has happened to me. Nobody can answer that so you have to try to accept it. I have good days and bad, but I try to console myself with the fact I am still here now,” she said.

“Tomorrow is not guaranteed for any of us, so you just have to do your best for now. I try to not think too much ahead.”

But despite this, her support system is what keeps her going. She said her husband, Joe, was a constant support, as were her sisters, parents and children.

“It doesn’t affect just me, it affects the whole family. And my own kids, they always help me out. Before, they would be up in their room and you would only see them when they came looking for food. But now, they see what I need and help me out,” she said.

She was speaking in advance of Global Awareness Day for MND (Friday, June 21st), when the Irish Motor Neurone Disease Association (IMNDA) seeks to highlight its campaign Voice4MND, which aims to raise awareness and amplify the voices of people living with MND in Ireland.

Áine McFadden, nurse at the IMNDA, said MND was a “progressive neurological condition”, but the speed at which it progressed varied significantly between people.

“It can affect every part of your daily living: your walking, your talking, your drinking, your eating,” she said. “Years ago it was called the 1,000 day disease, meaning you’d probably get three-five years. But I’ve met wonderful people who were maybe diagnosed 10 years ago and are still living with the disease. Nobody really knows the trajectory of the disease when you’re diagnosed.”

One of the biggest things that affect people diagnosed with the condition is the loss of voice. A survey by the charity found 80 per cent of people with MND experience voice deterioration which has a significant impact on their daily lives.

Three-quarters of people surveyed found this voice deterioration affected their confidence, while 93 per cent said voice deterioration affected their social interactions. As a result, more than 40 per cent avoid social situations altogether due to this issue.

Ms McFadden said in Ireland, “we all like to chat. We’re well known for the chat. That is a thing that people find difficult. And to be able to continue to communicate is so, so important,” she added.

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