LEARN 2025 – Lucy’s blog for MND Scotland

Lucy Lintott-Smith was a teenager when she received the devastating news that she had motor neuron disease (MND). Now, twelve years later, she continues to navigate her journey with MND, whilst being a loving mother to three beautiful children and a devoted wife to her husband, Tommy.  

In this blog, Lucy shares her experiences of living with MND and discusses the LEARN (Lived Experience and Researcher Network) events hosted by MND Scotland, which will take place across the country this year. 

Can you tell us about yourself?

Lucy Smith, 31, from Elgin, and a proud mum to three little miracles. Big fan of good food, Lego builds, all things organised, and anything to do with numbers.

When were you diagnosed with MND?

I was just 19 when I was diagnosed with MND on 19th November 2013 in Glasgow. Looking back, the symptoms had been creeping in for about a year, but it wasn’t until I finally saw a neurologist that things moved quickly. Within a week, I had an MND diagnosis – words that would change my life forever.

Why did you decide to go to the doctors/what symptoms did you experience?

It began with a strange weakness in my left hand and foot. It was small things at first, but enough to make me notice. My muscles started to waste away, and constant twitching became part of my everyday. I grew clumsy in ways I couldn’t explain, bumping into things, tripping over my own feet, and sometimes falling for no reason at all.

How has the disease progressed since being diagnosed?

Since my diagnosis, the disease has slowly but steadily progressed. I’m now in a wheelchair full-time, relying on aids and carers to help me get around and with daily tasks. I can still stand and take weight on my legs, but my strength is fading. My speech has become slurred, and I need to be fed.

It’s hard to feel independent when you have to rely on people for almost everything, and that’s been one of the hardest parts. But my breathing is still strong, and my personality is still completely me. MND can take a lot from me, but it hasn’t taken who I am inside.

To help others understand the impact of MND, what do you feel has been most challenging?

The hardest part has been accepting my diagnosis and making sure it doesn’t consume me or my family. I’ve had to fight the urge to constantly ask, “Why me?” and instead focus on staying positive. My sense of humour helps a lot, and the fact I’ve never taken myself too seriously, and my incredible family and friends keep me going.

Still, I know my diagnosis devastated them, and watching them adjust was heartbreaking. My kids are my reason to fight and the reason I get up every morning. It’s a blessing that I had my kids after my diagnosis.

A real turning point came when I saw a neuropsychologist. That’s when I decided to start truly living and to stop letting my fears control my life.

Can you tell us why you are interested in attending LEARN?

I’m interested in attending LEARN because I want to connect with others who truly understand what it’s like to live with MND, and to gain practical tools and knowledge that can help me and my family.

I’m especially excited that MND researchers will be there as it’s an incredible opportunity to hear first-hand about the latest research, ask questions, and learn more about the work being done towards finding a cure.

For me, LEARN isn’t just about information, it’s about hope, meeting people, sharing experiences, and coming away feeling inspired and more prepared for whatever comes next.

Why is it important to you for events like these to take place?

Events like these matter to me because living with MND can feel isolating, even when you have amazing family and friends. Being able to meet others who truly understand, to share experiences, and to learn from each other is invaluable.

Hearing directly from researchers gives me hope that progress is being made towards finding a cure. For me, it’s about knowledge, connection, and leave remembering that we’re not alone, and about the hope, support, and practical tools to face the future.

Is there anything else you would like to add?

If you can’t attend LEARN, but want to create hope, then donate via the MND Scotland website!

The Lived Experience and Researcher Network (LEARN), organised by Scotland’s MND charity, MND Scotland, brings together people affected by motor neuron disease (MND) and local MND researchers.  

For more information, please visit: https://mndscotland.org.uk/news/learn-2025/