Oliver Johnston - Living with MND

Hi, I’m Ollie, I was born in Dublin on a cold December night in 1975, that makes me (48) to date. I spent the first 20 years of my young life in the wonderful community of East Wall, then my family moved to Ballinasloe Galway which is my dad’s hometown, we set up home there and I lived and raised a family there. I am the proud father of 4 wonderful sons, Twins Aaron, and Dylan (25) Mark (22) and Jack (17) My first marriage ended in 2016 and I moved to the beautiful town of Newport in Mayo.

I always had a love for Mayo and have a mobile home on Achill Island for years. Our family history runs back to the days of the railway being built between Westport and Achill, I am the fourth generation Johnston on the railway and my twin boys carrying on the legacy are the fifth generation. In 2016, I transferred to Westport station as an intercity train driver and did so up to September 2023.

I had 25 years with Irish Rail before this issue arose, I was experiencing some weakness in my right hand when writing for work, I went to see my GP and she ordered an MRI of the spine for me. A few weeks passed and the MRI done, and the results came back all good but the weakness in my hand was getting gradually worse and extending into my arm.  I attended my GP again and a decision was made to go to UCHG Hospital in Galway.

On the morning of storm DEBI 13th November, I left Achill and headed for Galway at 430am, it was a very wild and stormy journey by road that morning but by Friday 17th after numerous tests in Galway Hospital that week and been giving my diagnosis of Motor Neurone Disease, the real storm had just begun for me.

I was absolutely shell shocked, I was never sick before, my appendix removed as a teen but never ever had anything worse than a cold or a flu or a sore back. This is not the news I was expecting and furthermore I know nothing about the disease and how it would affect me. I have to commend all the staff in UCHGs Neurological department for their support and care and continued support to date.

Today January 17th 2024 two months on from my diagnosis as I put this letter together 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, putting on socks, getting dressed, bottle tops, zips, buttons, laces, turning a key, brushing your teeth, putting gel in your hair, these are some of the negatives but I’m thinking of the positives, I can still walk ,I can still drive, I can still plan for the weeks and months ahead and I am, 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.

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 stay positive and battle on for me and my family.

Well, that’s me …Ollie giving my support for Tea for MND.