Last month, we hosted the 35th International Symposium on ALS/MND in Montreal, Canada. The International Symposium brings together researchers, healthcare professionals and people with and affected by MND to discuss the latest updates in research. The Symposium enables people with and affected by MND to hear what researchers all over the world are tirelessly working on and make new connections with those who have dedicated their careers to the field and others who are affected by the disease. Sue, a former carer for her husband who had MND, joined us at the Symposium this year. This is a guest blog from Sue to share more about her interest in MND research and her highlights of the event.
Can you tell us why you’re interested in MND research?

I cared for my late husband, who was diagnosed with ALS in 2003, whilst we were living and teaching in Singapore. We returned to the UK in 2005. Jim was very accepting of his initial diagnosis, grateful for having lived 50 healthy years; he was never angry, preferring to live each day as it came. However, as a scientist he wanted to understand what might have contributed to his condition.
Before returning to the UK we contacted the MND Association, and from the moment we arrived we were surrounded by amazing support and friendship from our local branch, Association Visitor and Regional Care Adviser. At one of the early Open Meetings we met Dr Brian Dickie. He gave a talk on research and introduced us to the concept of a “complex interplay of subtle genetic and environmental risk factors – each acting on their own more like a grain of sand rather than a weight” causing “the scales to start tilting and the disease to appear”. We began looking for Jim’s ‘grains of sand’.

Over the years Jim experienced changes in cognition that worried him and, as a family, we noticed subtle changes in behaviour, which ultimately resulted in a diagnosis of MND-FTD. Caring for someone living with MND is hard, but fronto-temporal dementia added a layer of sadness and complexity to each day. At the time people would talk of ‘being locked in a failing body’, no one seemed to be talking about cognitive or behavioural change, leaving me with feelings of guilt and concern at our changing relationship. We had to navigate our own way of coping with the challenges of apathy, loss of empathy, the repetitive behaviour, and the distress/fear he was clearly experiencing that we were only later able to attribute to hallucinations. The consultant suggested FTD, I hadn’t heard of it and turned to Google for answers. What I needed was to feel that I was not the only person facing such challenges, that they were recognised manifestations of a spectrum of symptoms of MND, and support to cope with them.
How did you get involved in research?
I began volunteering with the MND Association shortly after Jim’s death in 2012. In 2014, I was invited to speak, at an MND study day for health and social care professionals supporting people affected by MND, giving a personal perspective. The talk was well received and I was invited to speak at a similar event in 2015. Here I heard Professor Eneida Mioshi give a presentation on Cognition and Dementia in MND. At last, someone understood and was describing our experiences! Afterwards I thanked Eneida and offered my help in further research if it would be useful – we exchanged contact details.
Early in 2019, Professor Eneida Mioshi invited me to take part in a Patient and Public Involvement Advisory Panel to help discuss and shape management of cognitive and behavioural changes that may occur in people living with MND. The MND research team at the University of East Anglia had developed the MiND toolkit, an online resource which aims to help healthcare professionals and caregivers/family members manage cognitive and behavioural changes that can occur in MND. In 2021, I joined the Trial Management Group as the PPI for the MiND Toolkit.

At the same time I was also involved in a small way in Dr Ana-Paula Trucco’s research at the University of East Anglia. She was investigating factors affecting grief in MND carers, looking at the potential association of behavioural symptoms and their anticipatory grief, and later looking at the emotional impact of caring. What interested me about these research projects was that they targeted carer wellbeing in MND, which enabled me to use my experiences as a former carer positively in the hope of helping others.
The MiNDToolkit study showed the intervention was feasible and well accepted by carers and trained Health Care Professionals. A further trial is needed, and I look forward to being a co-applicant for future grants and part of a team to progress this work.
What did you learn from the event and how will this help you in the future?
It is a wonderful opportunity for the MND community to meet, network, question and share ideas. It is an opportunity to hear about cutting edge research in a range of fields from genetics, cell biology and disease markers, to therapeutic trials and clinical care. The Symposium reminded me that listening to people’s personal stories is a valuable part of being a support volunteer. After listening to a particular presentation on Acceptance and Commitment Therapy (ACT), I felt that the underlying concepts of acceptance and commitment to the present would be equally valuable for carers.
What was your highlight of the event?
I had a special reason for attending the 35th International Symposium on ALS/MND in person; it was held in Montreal, the city where Jim was born. Of course, it was good to hear results from studies and ongoing work, which give hope for the future. It was amazing to feel part of something so big yet at the same time personal, warm, friendly and welcoming.
There were many highlights for me. The increased recognition of non-motor symptoms and MND-FTD as a spectrum disorder is so important, as is the knowledge that sporadic FTD is also being studied. Session 2C looking at presymptomatic detection and early diagnosis was inspiring.
The opportunity to talk with researchers about their posters was a privilege. Talking with Daniel Saucier, EPI-12, about his research into environmental risk factors was fascinating. Dr Ana-Paula Trucco’s COG5 poster was shortlisted for a poster prize award, with the implications of her work having the potential to provide better support for carers being very positive. I enjoyed meeting Dr Lene Klem Olesen COG-03 and talking about her work to support adult children of people living with ALS (MND) who no longer live at home, and with Dr Emily Mayberry COG-06 who works to improve psychological care in MND.
Can you tell us about one particular research presentation at the Symposium that you felt was interesting?
I found Professor Gould’s talk on ‘Qualitative experiences of Acceptance and Commitment Therapy (ACT) from the perspectives of people living with MND and therapists: Data from an uncontrolled feasibility study and a randomised controlled trial’ of particular interest.

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She began by explaining ACT as an acceptance-based behavioural therapy that uses a combination of mindfulness and acceptance based strategies in conjunction with motivation and behavioural change strategies to help people live their lives in ways that are important and matter to them. This takes place alongside the difficulties they face that are outside their control – in this case motor neurone disease. The project aimed to find out if ACT was beneficial for people living with MND.
The team conducted a series of qualitative interviews with people with MND, carers and healthcare professionals to explore what a psychological intervention should look like, and how it should be adapted to meet people’s needs. These findings were used to develop an intervention based on ACT tailored to people’s needs. This was then tested for acceptability and feasibility. The final step was to evaluate the clinical and cost effectiveness of this approach in a larger randomised controlled trial. The presentation reported on qualitative findings from the feasibility study and RCT. Specifically, it focused on people with MND’s and therapists’ experiences of receiving or delivering ACT, which were explored through interviews and questionnaires.
They found that ACT is acceptable to people with MND and has a number of perceived benefits. ACT plus normal care was shown to be superior to normal care alone. It is effective in helping people manage their psychological wellbeing, and maintaining or improving their quality of life. For example, people reported being more accepting of MND, and of the need to accept aids and adaptations, and better equipped as they faced the journey ahead. People talked of being better able to cope and manage their feelings, and more able to acknowledge and talk about them. It helped them focus on the present with a more positive outlook, where people were able to recognise and understand the things that were really important to them. At the same time there were perceived challenges, including emotional challenges when discussing difficult or distressing issues that arise from a diagnosis of MND. Some people’s existing coping strategies such as avoidance and denial could impact on engagement with therapy. Not everyone felt the need for therapy, which could also provide a barrier to engagement.
Whilst the search is on for more effective treatments, it is important to ensure that people with MND can enjoy the best possible quality of life with good care and support. The next step is to explore who might benefit from this type of approach and when it might be appropriate in their MND journey. It might lead to a consideration of including a psychologist as part of multidisciplinary teams caring for people living with MND. There might also be merit in considering support for carers who might also benefit from ACT.
We would like to thank Sue for taking the time to write this guest blog about her symposium experience and also thank everyone involved in making the event such a success.