LEARN 2025 – Gemma Catton’s blog for MND Scotland

After a seventeen-month battle with motor neuron disease (MND), Wilma Catton sadly passed away in January 2015, leaving behind her two loving daughters, Gemma and Emily.

In this blog, Gemma Catton shares her connection to MND, her mother’s journey with the disease, and the importance of MND researchers engaging with individuals living with and affected by the disease during MND Scotland’s LEARN events across Scotland.

Can you tell us about yourself?

My name is Gemma Catton, and I am 43 years old.  I am from Dumfries originally and now live in Ellon, Aberdeenshire.  I work as a Specialist Occupational Therapist in stroke rehabilitation with NHS Grampian.

What is your connection to MND?

My mum, Wilma Catton, was diagnosed with bulbar-onset motor neuron disease on 30 August 2013.  She died on the 24 January 2015, aged 62.

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

My mum was an incredibly special person.  We shared a very close relationship, and I treasure every minute of our lives together.  She was kind, caring and a lot of fun to be around.  She had the best smile and sparkle in her eyes!  We had a lot of shared interests and enjoyed holidays together, shopping trips and outings to the theatre, cinema, concerts and rugby matches.

My mum enjoyed yoga and tai chi, and she had a good social network of friends.  She was a librarian and always worked in educational settings, starting her career at Edinburgh University Library.  She took a career break to raise my older sister Emily and I. She nurtured, supported, and encouraged us in everything we did.

My mum returned to work when we were at primary school, and she worked in school and college libraries in Dumfries for the remainder of her career.  She unfortunately had to stop working due to her diagnosis of MND and difficulties communicating and making herself understood.  She was devastated to have to stop working, not only because she loved her job and helping students with their learning but also because the structure and routine of going to work provided some normality and distraction throughout her journey of various tests and scans and coming to terms with the diagnosis.  Stopping working did at least give her more flexibility and freedom to spend time with family and friends and do the things that were most meaningful, enjoyable and satisfying for her.

Throughout the progression of such a cruel and devastating disease, my mum remained so positive and determined, and her personality and humour shone through.  She truly was an inspiration, and I love and miss her so much.

How did their illness progress?

For my mum, her first symptoms were a slight slurring of her speech, and eating was becoming a more effortful and slower process.  As the disease progressed, my mum completely lost the ability to talk, chew, and swallow, and she suffered widespread muscle wastage with physical and respiratory weakness.  She became entirely dependent on alternative methods of communication and used a text-to-speech App on her iPad to “talk” for her.

She experienced frightening choking episodes every day and suffered falls resulting in painful injuries as she became physically weaker.  She deteriorated quickly in her last couple of weeks, becoming very breathless and exhausted and passed away peacefully at home with close family, just 17 months after her diagnosis.

What impact did this have on you/your family?

MND is such a cruel and devastating disease.  It was incredibly hard and heartbreaking watching somebody you love deteriorate. I can’t even begin to imagine how it must have felt for my mum.  I hate MND.  I hate it for what it did to my mum.  I hate it for what it took away from my mum. And I hate it for what it has taken away from me.

Were you aware of MND before they were diagnosed?

I was aware of motor neuron disease but had limited knowledge and understanding before my mum was diagnosed.

The Ice Bucket Challenge phenomenon hit the summer after my mum was diagnosed, and without a doubt was hugely successful in terms of the funds it raised for MND charities and the heightened awareness it achieved amongst the general public, plus gaining support from high profile celebrities, sports personalities and politicians all taking part.

My mum was delighted and proud to feature on social media for MND Scotland during the Ice Bucket Challenge 2014. She helped to give the campaign real-life context, highlighting how the money raised helps people affected by MND and thanking people for their support.

General awareness of MND continued to grow with the success of the film The Theory of Everything, then MND featured on TV shows such as Casualty and Hollyoaks, and more recently, Coronation Street.

With high profile sports personalities sharing their stories and experiences of living with MND over the last few years, awareness of MND has never been higher.  I am committed to doing all I can to continue to raise awareness of MND.  Awareness is so important.  Without awareness, there is no funding; without funding, there is no research; without research, there is no cure; without a cure, there is no hope.

Can you tell us why you are interested in attending the upcoming LEARN events?  Why is it important for events like these to take place?

Prior to qualifying as an Occupational Therapist, I worked as a research scientist with a PhD in medicinal chemistry and subsequently worked in the field of science education and public engagement.  I previously organised two “Meet the Scientist” events in Aberdeen for Global MND Awareness Day in 2014 and 2016, bringing local MND researchers, people affected by MND, and the general public together.

My mum attended the first event in 2014, and I saw first-hand the positive effect meeting researchers striving to find a treatment and cure for the disease she was living with had on her – it made her feel hopeful and supported.  The benefits to researchers meeting and engaging with people affected by MND and hearing their stories and experiences gives a real life context to their work and an enhanced appreciation and understanding of the purpose and importance of the research they are undertaking, plus providing a source of inspiration and motivation to reflect on and help get them through challenging days in the lab.

The upcoming LEARN events will be a valuable experience for all involved, and I am very much looking forward to meeting other people affected by MND, sharing my experience, and hearing updates and progress from MND researchers.

Is there anything else you would like to add?

As a family, we are extremely grateful and appreciative of the support and services provided by MND Scotland.

As well as helping to raise awareness of MND, I am committed to fundraising for MND Scotland in memory and celebration of my wonderful mum.  We have now raised over £25,000 and know the money raised will be put to good use supporting families affected by MND, plus funding essential research to gain understanding of MND and ultimately, hopefully, find a treatment and cure.

Current active fundraising activities include my mission to “Sock it to MND” and Emily and I will be participating in the MND Scotland Fun Run and Fire Walk in September.

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/