15 October 2025 Living with MND
Meet Eugene...
Eugene lives in Chelmsford with his wife Nicola and their two children Isabella and Oliver. Before his MND diagnosis, Eugene had a very active life, and the family spent five years living in Hong Kong for Eugene’s work. After his speech began to slur and he noticed weakness in his left arm, Eugene was diagnosed with MND in 2023. Living by his personal mantra, ‘Accept. Adapt. Overcome’ Eugene prioritises making precious memories with his family and friends.
Life before MND
"Before I was diagnosed with MND, I enjoyed a very active lifestyle."
My name is Eugene. I live in Chelmsford with my wife Nicola and our two children, Isabella and Oliver. I work for Northern Trust in a client facing role servicing our Asset Management clients and have been there for over 10 years now.
Before I was diagnosed with MND, I enjoyed a very active lifestyle. In my early 30s I was hugely dedicated to Mixed Martial Arts (MMA), Brazilian Jiu Jitsu (BJJ) and going to the gym. I was and still am a firm believer in ‘healthy body, healthy mind’. With that said, I’m also extremely social in nature and enjoy good food and a few beers so it was a constant balancing act.
Fast forward to February 2018 and I am 37 years old with a toddler and a baby. A job opportunity opens up in Hong Kong and my wife and I decided it would be a great experience for us all to live abroad. Life in Hong Kong was amazing, and two years very quickly turned into five! As a family, we enjoyed the good weather, a lot of hiking, amazing food, forging new friendships and lots of travel.
Early symptoms and diagnosis
"My brother pointed out a slight slurring of my speech."
In the Summer of 2022, we came back to the UK for a few weeks for my brother’s wedding. It was during this trip my brother pointed out a slight slurring of my speech. It was only noticeable to those who knew me really well. I went to Basildon hospital where they referred me to the stroke unit. After a number of tests, I was given the ‘all clear’. I returned to Hong Kong somewhat relieved but still curious as to what was causing the speech issue.
In the latter part of 2022, I went to see a Neurologist in Hong Kong as I also started to notice a slight weakening of my left arm and reduced dexterity in my fingers. Again, I was given the ‘all clear’ and sent on my way with some vitamin B supplements. After a few weeks and no improvement, I insisted something wasn’t right, so the Neurologist carried out a nerve conduction test. The results were inconclusive, so he referred me to a Specialist Consultant. I was very fortunate this particular Consultant had done his own independent studies in MND.
I had to undergo a few more tests but the Consultant was transparent in that he suspected either MND or Kennedy’s disease. My blood sample needed to be sent to the US to be tested and would take a couple of months before we got the results, but we knew regardless, it wouldn’t be a positive outcome.
In the early part of 2023 I received the formal diagnosis of bulbar onset MND and as a result, a significantly reduced life expectancy of one to three years. I had had a few weeks to prepare mentally so I wasn’t shocked, but I felt an overwhelming sense of anxiety and had a thousand questions running through my mind all at once. How do we tell the children? - they’re not equipped to process news like that! How do I ensure my wife and kids are okay and provided for? When and how do we tell our family and friends? When do I tell work and how on earth do we get back to the UK?
Sharing the diagnosis
"Telling the children would require a lot more thought."
Nicola was and still is nothing short of incredible. She made it clear from the start that she would support my decision on how and when to tell family and friends. Telling the children would require a lot more thought. We would need to research the best way to handle the communication but also take into account their individual personalities. How do we bring them on the journey without crushing their fragile little hearts? The thought of it was paralysing.
I decided to hold off on telling family and friends until my decline was more visible as I wanted to spare them the pain of having to process the news for as long as possible. We didn’t tell them until April that same year. We didn’t tell the children until much later.
Adapting to MND
"I’m managing to remain positive and focus on the good things in life."
There has been a lot of change over the last 12 months. My speech has declined to a point where I need to use short sentences and simple words to stand any chance of being understood. Even then, only those who spend a lot of time with me can understand what I am trying to say. My daughter is the most proficient at understanding me and often plays the role of my personal translator.
I cannot move my tongue so cannot manipulate food around my mouth. Consequently, all my food needs to be soft and small, puree or liquid as I can’t chew; I have to swallow everything whole. For a self-professed foodie who loves cooking, that is a constant kick to the n*ts!
The Association has helped me adapt my home by part-funding a through-floor lift. I am not able to navigate stairs anymore, so this helps me retain some independence.
With all that said, my mental health is still pretty strong. I’m managing to remain positive and focus on the good things in life. Nicola and the kids are amazing and are my primary motivation to keep smiling and fighting every day. I have swapped bottomless brunches for seeing Oliver live his best life playing rugby and Isabella dancing in the garden like nobody’s watching. I relish every moment with my friends and family, and I look for ways to bring a smile to the faces of those I love and value. I don’t plan lads’ nights out; I plan family time and financial stability for my wife and children.
Advice to others
"Accept. Adapt. Overcome."
Very soon after my diagnosis, I employed a personal mantra of ‘Accept. Adapt. Overcome.’ I accept that MND is degenerative and will beat me eventually… but not today! I accept things that are outside of my control but for me, ‘acceptance’ isn’t the same as ‘resignation’. I find that once I accept something such as another incremental physical decline, I can look for ways to adapt and by adapting, we can more often than not overcome the challenges we are faced with.
This isn’t always easy and sometimes it’s not even possible but my advice would be to try to apply it whenever you can. You will often feel deflated, frustrated and alone in the sense that nobody truly understands the challenges you face every day. But remember, giving up is a choice and one which you have full control of. When you’re having a bad day, the smallest thing can feel like the end of the world. Conversely however, I find that a small achievement through this mantra can be extremely uplifting and empowering. Take one challenge at a time or you run the risk of feeling
overwhelmed.
Decide how you want to spend the precious time you have. Again, it’s a choice. You can fill it with self-pity, resentment and bitterness or you can laugh, love and spread as much joy as you can. I know which one I prefer. Surround yourself with positive people too. You’ll be surprised how much they help you maintain your own positivity and how dramatically negative people can bring you down.
Finally and most importantly, accept the help when it’s offered. The majority of people who offer help do so because they care. Let go of any notion that they are helping you out of pity or that you’re any less of a person because you accept help; it’s nonsense and its toxic. If you have been gracious and fortunate enough to invest in and cultivate meaningful friendships, don’t be afraid to leverage them. That is what friends are for.