Monday 16 July 2018

'We thought we would be spending our retirement travelling' - the reality of living with motor neuron disease

'This disease has taken away so many of the things we take for granted' - Paul Carroll (65) on losing his speech

Paul and Lilian Carroll
Paul and Lilian Carroll
Laura Larkin

Laura Larkin

A Limerick man with motor neuron disease has paid tribute to his wife of 38 years who “accepts me as I am”.

Ahead of Valentines Day Paul Carroll (65) has thanked his wife Lilian for her “unwavering support”.

Paul, who lives in Caherdavin, Co Limerick, was diagnosed with Motor Neurone Disease just as he was on the cusp of retirement.

The day of his diagnosis - December 19 2016 - “is a day etched in our memories”, he said.

Paul Carroll
Paul Carroll

Just six weeks earlier Paul said he had been feeling tired and out of sorts, and had noticed a worrying speech difficulty.

“I was 64 years old on the cusp of retirement and had never been ill in my life before,” he said.

In just over a year many of his motor skills including his speech and mobility have deteriorated.

“The journey since then has been a bit of a rollercoaster. The disease has gradually reduced my ability to do ordinary day-to-day things which most of us take for granted,” he said.

“Having been a keen walker I now use a stroller to move around and a stair lift to get upstairs” he said.

“I have some difficulty swallowing which limits my choice of foods. The most radical change for me however is a severe deterioration in my speech,” said Paul.

He has also been forced to retire early has his symptoms progressed. Prior to retiring Paul worked on the Growing Up in Ireland research project.

The couple had looked forward to a leisurely retirement filled with travel.

"We saw ourselves having time for travel both abroad and at home, enjoying our garden and the company of family and friends. The intrusion of MND on our lives has meant a radical change to these plans," the couple said.

However, Paul's diagnosis has also made him realise how kind people can be in your time of need he said.

“MND has opened my eyes to the generosity of spirit of the many good people who have helped me along the way,” he said.

“I would firstly pay tribute to my wife Lilian who has been unwavering in her support and understanding. I know my illness has placed a heavy burden on her but she accepts me as I am.”

Lilian has also retired from her job in retail to look after Paul.

"She says that she made a commitment when we were married and that she would not renege on that promise," Paul added.

He said that if the roles were reversed he would do the same for his other half.

Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting. 

All patients experience different progression of the disease which can affect walking, talking and breathing.

The Irish Motor Neuron Disease Association (IMNDA) is charity which supports those with the condition and their loved ones.

This year they are asking people to stay silent for at least 30 minutes in order to appreciate the difficulty those who lose their speech to the disease face.

The campaign #Voice4MND will run throughout February and anyone who wants to take part can set up an online fundraising page and get sponsor cards by emailing fundraising@imnda.ie  or people can text MND to 50300 to donate €2.

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