LEARN 2026 – Claire’s blog for MND Scotland

In this blog for MND Scotland, Claire Duffus, from Turriff, Aberdeenshire, discusses her connection to motor neuron disease (MND). Claire’s father, Alexander, bravely battled the disease, and she talks about the impact MND had, and why it was important for her to attend MND Scotland’s LEARN (Lived Experience and Researcher Network) event in Aberdeen.

Can you tell us about yourself?

I’m Claire, and I’m 31 years of age. I live with my partner Scott and our two-year-old Fox Red Lab named Rex. I work as a full-time Administrator, but also as a relief Practitioner in a nearby After School Club.

What is your connection to motor neuron disease (MND)?

I never thought I’d have a connection to MND; however, very sadly, in February 2024, my dad, Alexander Duffus (Sandy), was diagnosed with MND at the age of 58. He passed away in January 2026 after a long, courageous battle.

Can you tell us more about the person with MND and your relationship?

He was not only my dad, he was my best friend. He is my biggest inspiration. He was the most hardworking man I knew. His family always came first. He was cheeky, witty, and had the biggest heart. He worked within the agriculture industry all his life, and I think anyone would agree that nobody ever had a bad word to say about him – how could they?!

I was very close to him. We walked the dog together, and hill walked – we climbed Ben Nevis back in 2021, drank wine, and had such a great bond. Friday nights we used to drive up to the nearby town to get an ice cream, it was something that started as a wee treat, then became something that happened every Friday for a couple of years.

How did their illness progress?

In 2022, dad first mentioned a ‘stiff arm’ but thought it was arthritis or, in his words ‘old age.’ – didn’t think too much of it at this point.

Later that year, he was struggling with fluids, which means he choked a lot while drinking – it wasn’t happening all the time, but quite often, which was very concerning.

Dad was back and forth to the doctor as he was rather concerned about what was going on, however, it seemed that the doctor wasn’t concerned and he received tablets instead. As expected, the tablets didn’t help.

It wasn’t until early 2024, when he ended up getting the cold/flu, that he was really struggling, and another doctor was able to see him who took his concerns more seriously and scheduled in tests/scans in Aberdeen, where at this point nothing seemed to show up as to what was wrong.

After more tests, in February 2024, all of our lives came crashing down when Dad got the dreaded news of his diagnosis.

His consultant had confirmed that he had rapidly progressing MND for his age. Dad had managed to record his voice through the SpeakUnique app early on so we could always hear his voice and for dad to be able to communicate with us down the line, and had a PEG fitted in early April 2024.

Dad ended up not being able to eat or drink anything by the end of 2024 and was relying on ready-made 2kcal supplements.

He lost the ability to speak, so we communicated only via the SpeakUnique app and WhatsApp/Snapchat. He struggled with his speech for quite a while before he lost the ability altogether, his speech was slurred for a while.

The dad and husband we knew was slowly deteriorating every day. He required an NIV machine for the remaining few months before his passing and also had a syringe driver for approximately 3-4 months as he really struggled with saliva, which made him choke very regularly. MND takes everything away from a person, the ability to talk, eat/drink, walk unaided, breathe unaided.

Dad used a zimmer for 4-6 months prior to his passing for going to the toilet/going to bed. He needed assistance with getting up off the seat, and someone would have to walk alongside him.

He used walking sticks prior to using the zimmer. This was needed when he was getting weaker as the sticks didn’t give him the security.

Dad needed a wheelchair when he needed to go to hospital appointments etc, to get to the car/from the car to the hospital room as it was too far to walk.

What impact did this have on you/your family?

MND has destroyed our family. It destroyed my dad’s life, and we had to watch dad go through the most horrific ordeal. Seeing someone you love, start to decline every day is heartbreaking. We have grieved twice; we grieved the man he was before his diagnosis and then we are still grieving again since dad’s passing. MND destroys people and their families. We will always be so thankful to our mam, Sonya, who was dad’s full-time carer, and was with him 24/7.

Can you tell us why is it important for events like LEARN to take place?

LEARN events are so important. We need these events to see what is happening in terms of MND research to hopefully give hope to those living with this awful disease. It’s a place for people with MND, family members, and carers to speak to others and feel like they are not alone.

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-2026/