This blog is part of the ‘Highlights from Glasgow’ collection of articles, where you can read about the content of some of the talks and posters presented at the 29th International Symposium on ALS/MND.
Written by Kaye Stevens and Rachel Boothman
At the 2018 International Symposium on MND in Glasgow, it was positive to see an increase in the number of studies about the psychological and emotional impact of MND/ALS. Read about our highlights below.
From the expected to the unexpected, such as studies which considered the effect of gut health on brain and mood. (C2) J Cryan – As stress and other factors such as medications can affect gut bacteria, there is a need to maintain a healthy microbiome. This led to a recommendation for sharing refined human poo. Coming your way soon could be ‘Crapsules’ and supplements such as ‘Poopulate’.
(C40) Jane Parkin Kullmann – In other work on stress, researchers in Australia found that stress is not necessarily a risk factor in the development of MND/ALS, indeed it appears that people with the disease may actually be more resilient. Further study is ongoing to determine whether this might indicate a genetic difference.
In the world’s largest study on quality of life and MND (C49) Carolyn Young, it was suggested anxiety plays a major part on an individual’s sense of wellbeing. This raises the question; is there positive value in therapy on acceptance and treatment for anxiety? Quality of life should also tie into the support given through all disciplines to help ease the impact across daily living. This further underlines the need for multidisciplinary working and how crucial funding is for provision of co-ordinated care.
However, even within the best maintained health and social care team, both patients and carers tend to identify their own ‘lynchpin’ or key professional, where a trusted relationship is fostered through regular contact (C50, Esther Hobson). This has been shown as important for reassurance and the recommendation is to upskill networks and promote the concept of lynchpins.
Of interest with many studies (C32/33/34/35/48), was the increased use of remote technology to record daily activities and symptoms. Psychological and emotional context is being included more and more, including Patient Reported Outcome Measures (PROMS) on both physical and mental health, quality of life, fatigue and emotional problems. Although this cannot replace detailed clinical face to face assessment, it can provide extra data on disease progression and improve patient/clinician communication.
There is an emerging trend in the use of mindfulness meditation to help relieve depression, anxiety and perception of quality of life (C51) F Pagnini. Meditation is the tool, mindfulness is the objective. Mindfulness is about being present in the here and now, and able to adapt, rather than being stuck and repeating unhelpful behaviours. In this study daily exercises appropriate to MND were emailed by the clinician to the patient to improve mindfulness, which indicated over time a significant improvement to the psychological wellbeing of people with MND/ALS.
The Symposium also focused on caregiver burden. The more hours spent caring and the more demands made, the greater the risk of anxiety and depression for the care giver. In a small study (C52) S Carney, practical and emotional stress also rise from changes to the relationship with the diagnosed person and the new roles the care giver takes on. Exploring ways to find value in the giving of care, along with task oriented coping strategies can help bring balance and reduce a sense of burden.
However, the whole family is affected by the impact of MND. The person with the disease may have changes to mood, a sense of disorder and apathy but those close may also feel anxiety and stress. Sometimes psychotherapy may be at odds with culture, faith or belief and may not be accepted as a form of support. This is where music therapy and art therapy can help families gather together and share their emotional responses together. This can have a healing effect for the family as well as the person with MND/ALS. (Allied Professionals Forum Alisa Apreleva and Viviana Faierman)
The key message from these sessions highlights the need for professionals to monitor psychological and emotional wellbeing from diagnosis onwards. This is important for the person with MND and those close to them. Appropriate remedial therapy/support should be offered where possible.
Find out more about the topics discussed in Glasgow on our Periodic table of Symposium at www.mndassociation.org/symplive.
Emotional levels with MND are high. I laugh and cry a lot when listening to my favourite music. And now my 9yr old Grandaughter playing the violin I struggle not to cry and 7yr old grandson playing rugby as well that I love to go and watch.
Thank you for your comment John. As we can see there is much research underway that is attempting to find ways in which the emotional aspects of MND can be managed to improve quality of life. I’m glad that you are continuing to enjoy your grandchildren’s activities despite the changes to your emotions.
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