'The future isn't guaranteed to anyone, so just live for today and enjoy'

Laytown mother-of-four diagnosed with Motor Neuron Disease at the young age of 53 is determined to live life to the fullest and is organising a beach walk from Laytown to Bettystown to raise funds for IMND

A BRAVE Laytown woman who received a shock diagnoses of Motor Neuron Disease earlier this year is urging people to be vigilant and look out for changes in their body.

Eileen Butler began experiencing what she thought were menopausal symptoms in late 2022 but would go on to be diagnosed with the terminal condition at the young age of 53.

The mum-of-three who is determined to live life to the fullest while she can plans to take part in a 5km walk that she has organised from Laytown beach to Bettystown beach to raise funds for The Irish Motor Neurone Disease Association with over €,3500 already being donated to the cause.

Inspirational Eileen also wants to urge people to look out for the signs of IMND.

"For me this diagnosis was literally a bolt out of the blue," she said. "I went from being a typical mother, wife, running a household, not smoking, drinking very little, trying to eat well, to being told I have a terminal illness.

"I guess with all terminal illness diagnoses, you first of all just go into complete shock. You start asking all the questions, why do I have this, how can this be happening to me, what did I do etc.

"Telling your family and especially telling your children news like this is probably one of the hardest things a parent has to do. But we are a family that speaks about lots of things and through talking about it we are getting through it. I am very lucky that my parents and sisters all live near me and they have been a great help and support."

Eileen began to notice changes in her body and speech late last year.

"I began to notice a change in some words I said around December of last year," she explains. At first I thought that it was due to a bit of stress of tiredness, the usual culprits, but as time went by my husband and children began to notice my words were not clear.

"I also noticed I would have a lot of saliva too."

At a check-up with her menopause doctor in March, Eileen mentioned these new symptoms to her.

"She told me that the medication would not have this effect but to make an appointment with my GP asap, which I did," said Eileen. "During this time I was also attending a physiotherapist for some neck pain and weakness and no matter what exercises he gave me I still wasn’t getting any strength back into my neck muscles," she added.

"He then decided to refer me for an MRI."

Eileen's GP immediately referred her to the Medical Assessment Unit of Our Lady’s of Lourdes Hospital in Drogheda where she underwent a CT scan to rule out any stroke or any tumours.

"I was also seen by a Speech and Language Therapist who confirmed I had problems with speech and also my swallow," remembers Eileen. "On leaving that day I was being referred to see a neurologist but it would have taken over a year to see one through the public system. Thankfully, I was in a position to see one privately in Beaumont six weeks later."

Eileen was diagnosed by a neurologist in Beaumont Hospital in May with MND later being confirmed by Professor Orla Hardiman.

"Her words were, “Unfortunately it is Motor Neurones Disease but it is only localised in one area”, recalls Eileen.

"She went on to say I was very healthy, young and also an ideal candidate to take part in upcoming trials and research.

"This immediately changed my whole perspective on the disease and I came away with a certain amount of hope that maybe there will be a future for me after all."

The Laytown woman points out that when people hear of MND, Charlie Bird or Stephen Hawking may immediately come to mind but there are varying degrees of the disease, something Eileen has learned along the way.

"Some people can live for many years with this disease, as life expectancy can vary greatly from patient to patient. It is a very personal disease as I have been told no two people are the same. It is also a disease that can affect young people too as I have seen at hospital appointments."

Eileen, wife to Joe and mum to Aoife (21), Joseph (20), Thomas (17) and Cillian (14), says support of family and friends has kept her positive and grateful.

"I am here and I am well for now and for that I am grateful," she said. " I have a brilliant family and have brilliant friends and they will keep me going even though they are struggling with this themselves.

"I’m not looking too far into the future now. Someone said to me that they were sorry that this was happening to me, but I said don’t be. I now know what is happening with me, I can prepare things and do things that I have always wanted to do, now.

"But people are killed on our roads every day and never had the chance to do what they always dreamed of doing.

"All the little things that we worry about in life all seem so ridiculous when you’ve been told you have a terminal illness. Don’t put off things that you want to do until next year, if you can do it now, do it. The future is not guaranteed to anyone, live for today and enjoy."

The IMNDA is a huge support to not only patients but also the family members and carers of people living with this disease according to Eileen who said:

"Soon after I was diagnosed with MND, I joined Irish Motor Neurone Disease Association and they cannot do enough for anyone affected by the disease.

There are only six specialised MND nurses throughout the country, so as more funds are raised Eileen hopes more nurses will be employed.

"The IMNDA also funds vital research into this disease, she said. "Presently there is only one medication in the treatment of MND in Ireland but hopefully next year research will be completed on different drugs which will help patients. At my hospital visits you will see not only the doctor but also any therapist you may need eg: SLT, OT, Physio and also a nurse from the IMNDA will all be there."

Eileen is urging people to take heed to changes in their bodies as early diagnosis is key.

"I urge people to keep a check on any changes they may be having with regards to their limbs, their speech, their swallow and also now there has been research showing that MND can also affect your cognitive and behavioral functions. I know it is certainly not a disease I would wish on anyone but there is a huge amount of support out there when you have been diagnosed."