Irish train driver got MND diagnosis after noticing one strange symptom at work

One man who received a shocking diagnosis of Motor Neurone Disease late last year after noticing an odd symptom at work.

Oliver Johnston, who is supporting the Irish Motor Neurone Disease Association's (IMNDA) annual Drink Tea for MND day, had been working for Irish Rail for 25 years before his diagnosis.

Olly was the fourth generation involved in the railway and was working as an intercity train driver before his symptoms began. He explained: “I was experiencing some weakness in my right hand when writing for work. Following two GP visits and an MRI, it was getting worse, and around the time of Storm Debbie in November of 2023, I was given a diagnosis of Motor Neurone Disease (MND). You could say the real storm had just begun for me. I was shellshocked. I knew nothing about the disease and how it would affect me."

He added: “Today, just a few months on, I have a lot of weakness in both hands continuing up into the arms, the simple things we take for granted are no longer simple, like putting on socks, getting dressed, opening bottle tops, zips, buttons, laces, turning a key, brushing your teeth, putting gel in your hair, these are some of the negatives.”

Despite being faced with this diagnosis, Ollie is focused on the positives and on supporting others who are living with MND much like Charlie Bird who campaigned tirelessly for charities before his death last week.

“I can still walk, I can still drive, I can still plan for the weeks and months ahead. I’m getting married next month and planning a holiday in March. My dream always was to do Route 66 and I hope to accomplish that this year too," Ollie said.

“My life has been good, I have wonderful parents, five brothers and a sister, four great sons and a loving, caring, strong fiancé who will soon be my wife. There are many wonderful things to keep looking forward to in this life, so I’ll stay strong and stay positive and battle on for me and my family.”

Ollie is one of the more than 450 people living with MND in Ireland. 1 person is diagnosed every 2 days with the condition, and it is often referred to as the 1,000 day disease. 

The Irish Motor Neurone Disease Association (IMNDA) has launched its annual Drink Tea for MND, now in its 15th year. The campaign aims to raise awareness for MND and the effects it can have on people living with the disease, which can include no longer being able to enjoy simple things – like having a cup of tea. This year, Drink Tea for MND is being fronted by Oliver (Ollie) Johnston.

Lillian McGovern, CEO, IMNDA commented, “We rely heavily on fundraising campaigns such as Drink Tea for MND – it’s one of our biggest events in the calendar year, and we’re so grateful to Ollie in giving his time and sharing his story. Awareness matters and 85% of our income comes from public donations so please, join Ollie and all of us – any day during March – in raising a teacup in support of everyone impacted by MND.”

The Drink Tea for MND concept is simple; you host a morning or afternoon tea for your family, friends, workplace, club or school and help raise vital funds to provide services and support to people in Ireland impacted by MND

Take part in Drink Tea for MND, host your own tea party this Spring and raise vital funds for people living with MND. More than 450 people in Ireland living with MND and 1 person is diagnosed every 2 days

Just register here