Living with MND: 'I’m determined to do as much as I can, for as long as I can'

In the short time since Ollie Johnston was diagnosed with MND, his mobility has significantly reduced, and he now relies on a walking frame. But it hasn’t stopped him from making travel plans — including a trip down Route 66

Fri, 08 Mar, 2024 - 15:10

Arlene Harris

Six months ago, Ollie Johnston noticed that his handwriting had started to become a bit sloppy. It was not a major concern, but it did seem odd. A couple of weeks later, he and his partner, now wife, Geraldine, went on holiday to Spain, and he found that his arms seemed to be losing strength, and he felt exhausted.

Upon his return, he saw his doctor, who couldn’t find anything wrong. But he wasn’t improving, so following a subsequent visit, he was referred for an MRI, which came back clear.

At this point, his symptoms were becoming noticeably worse and his doctor suggested a second MRI. Ollie decided he didn’t want to wait another month for the test, so in November 2023, during Storm Debi, he drove from Mayo to Galway Hospital, where he was seen swiftly and admitted for a week.

“I underwent a lot of tests which came back clear. But four days later, I was told that it was likely that I had MND. Although I had done a bit of googling and was aware of people like Charlie Bird who have it, I was shell shocked when I got the diagnosis,” says Ollie, whose older brother Anthony was with him at the time.

His doctors put him on medication to slow the progression of the disease. At a follow-up appointment with consultant neurologist Prof Orla Hardiman at Beaumont Hospital, Dublin, his MND diagnosis was confirmed.

His symptoms have quickly progressed in the months since, making daily life more difficult. “When I was in hospital, I was able to do most things for myself, but now I can’t go anywhere without a walking frame, I can’t get dressed by myself, I need help getting in and out of the shower, and I struggle with brushing my teeth, eating food and even lifting a cup of tea.

“My legs are getting weaker as well, so it takes me three or four minutes to stand up in the morning. Although I have an exercise bike, which I try to use daily, things are becoming harder.”

Each day as it comes

He is doing his best to keep busy and keep his mind off his condition. “I haven’t cried it out yet as I have four sons (aged between 17 and 26), my wife, my parents and five siblings, so I have to stay strong for them. I’m trying to deal with it as best I can. But it is difficult as things have got so much worse in such a short time.”

Ollie, who is 48, was recently presented with a watch from Irish Rail for 25 years of dedicated service. He says he wants to make the most of life and complete as many challenges on his bucket list as possible.

“I’m determined to do as much as I can, for as long as I can,” he says. “Geraldine and I got engaged on New Year’s Eve and married on February 16. We’re hoping to go on a holiday this month. My dream has always been to do Route 66 in America, so I hope I can do that this year. It was something I had kept putting on the long finger, but now is the time.

Ollie Johnston: 'I was shell shocked when I got the diagnosis'

“I am fortunate that I can still walk with the help of a frame and make plans. Also, my four boys (from a previous marriage) are reared, so it is easier than it would be if they were younger.”

His advice to anyone else who has been diagnosed with MND is to “take each day as it comes”.

“Also, make sure to make plans to do the things you always wanted to do. The Irish Motor Neurone Disease Association (IMNDA) offers a lot of support.”

He is determined to keep a positive mindset and is due to start on a trial drug, “which will hopefully hold the symptoms back a bit”.

“I have lots of wonderful things to look forward to and am determined to stay strong and positive, both for myself and my family.”

Hope for the future

One person is diagnosed every two days with MND, and Naomi Fitzgibbon, director of nursing and services at IMNDA, says that the disease can affect anyone.

She says, “MND symptoms can be managed to help sufferers achieve the best possible quality of life. Currently, more than 450 people live with MND in Ireland, and our team at the IMNDA is there to support them and their families, including our six MND nurse specialists, who provide support in person and over the phone.”

Prof Hardiman says there is hope for the future.”MND is a condition that affects people in the prime of their life,” she says. “There is no cure at present, but this is a time of hope. The work being performed by the MND Research team at Trinity College Dublin and Beaumont Hospital, along with our colleagues across Europe, aims to develop better and more effective treatments for those affected.”

This month sees the start of the annual Drink Tea for MND, organised by IMNDA to raise funds.

“We hope as many people as possible get involved this year,” says Naomi Fitzgibbon.

“It’s one of our biggest fundraisers, and the money raised will go towards our key services, including financial assistance towards home care for families, specialist medical equipment provided free of charge to our clients, assistance towards counselling; grants towards travel, voice banking and a recharge grant as well as supporting research into the causes and treatments of MND. It will also go towards maintaining the work of our amazing nurses across Ireland.”