As a new drug offers a glimmer of hope for a small percentage of people with motor neurone disease, Professor of Psychology Eva Sundin offers an extraordinary insight into what it is like to be diagnosed with this frightening condition – and how a form of psychological therapy is helping her cope with her rapidly changing life.
The breakthrough came when my therapist showed me photographs of the impact dams can have on the surrounding landscape when they fail. Their purpose is to defend and protect. But if cracks appear in the wall, the dam will burst, causing a flood that can destroy everything in its path.
The photos showed me what I am doing to myself and my relationships with family and friends when I bottle up my feelings. I was already aware that stifling my painful anger and sadness did not make those feelings go away, but this was different. Like lightning, it hit me that I had a choice. I could continue to turn away from the difficult feelings, knowing full well that they would only flood other parts of myself. Or I could learn to live with them. It felt like it should be an easy choice. But for someone like me the next question was, how long will I be able to work on removing those barriers?
That’s because I have motor neurone disease (MND). At least, that’s what the doctors tell me. There is, in fact, no diagnostic test for MND, instead clinical examination and electrophysiological tests are carried out to exclude the presence of other neurological conditions. There is currently no cure, and typical survival is two to three years following symptom onset. This news was broken to me rather abruptly two years ago in 2020.
But I am lucky in some ways. As a practising clinical psychologist, I was already aware of something called Acceptance and Commitment Therapy (ACT), a relatively new type of psychological therapy that helps people find new ways of adjusting their behaviour – something that can be necessary after trauma (in my case, a life-altering diagnosis).
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ACT helps me to accept myself even when I cannot stand some of the things that MND has done to me. For example, lately it has become too painful for me to watch myself in a video call. This is because I do not recognise this person with weakened muscles around her mouth and throat. ACT has helped me realise that I can choose – I don’t have to force myself to engage with losses that feel unbearable.
Instead, I have learnt to comfort myself when the mere thought of watching myself in motion makes me weep. We have only limited understanding of the psychological impact that MND has on people in its various stages, and we know little about what psychological interventions might be useful. For the time remaining, I am using my personal experiences and professional background to help shine a light on these gaps for the benefit of those afflicted by MND in the future.
Losing my voice was just the start
I am a perfect example of someone who downplays ailments until medical support is urgent. In early spring 2019 I noticed that my voice had gone significantly weaker. This was not entirely new. In the previous year I had also had a few problems speaking up. It could happen all of a sudden, and often in the middle of lectures to my psychology students. I knew my voice was becoming a real problem when my students seemed to lose interest in hearing about things like traumatic experiences in children and young people. I put my voice problems down to my existing progressive neurological illness, multiple sclerosis (MS), asked my boss to change my workload so I could work with smaller student groups only, and I did voice training on my computer in an attempt to address it.
I finally contacted a speech and language therapist at the MS clinic where I was a patient. She informed me that the waiting list was very long so when I was still waiting after a few months I decided to look up alternative support and found a voice coach in London. Full of anticipation, I arrived for my first session. I was sitting in my wheelchair outside something that looked like a piano store. “This doesn’t seem right”, I thought. But a friendly man opened the door and showed me to a lift on the other side of a large showroom with lots of upright and grand pianos. I took the lift to the second floor and there my voice coach gave me a warm welcome. She showed the way to a small room with a few chairs and a grand piano and explained why a good posture is key for a healthy voice, before we got going with voice exercises.
At the end of that first session, I felt this training was going to be useful, and we agreed that I would have monthly face-to-face sessions. It went on for a couple of months but when the first COVID-19 lockdown was announced my voice training was interrupted. At the time I thought it was a temporary break and I would soon pick it back up again.
That – as we all know – didn’t happen. Time went quickly, and my speech difficulties worsened. I became more eager to understand what was going on. I often discussed the problem with my family, and we wondered if it could be due to Lyme disease and not MS. I contacted my GP who said it sounded like I had acid reflux because lots of reflux can cause enough inflammation to the vocal cords and change the voice, and so he prescribed medication. At the time I was happy to try it although I didn’t have the typical symptoms of acid reflux (heartburn and indigestion).
Despite weeks on the medication and continued voice training on my computer, my voice did not improve. I sent voice messages to the nurses at the MS clinic but when I didn’t hear back from them I called my GP again and asked if it could be silent reflux – I had read online that this reflux doesn’t cause heartburn and indigestion but it can damage the voice box. He said it was possible and arranged referrals to both a gastroenterologist and a speech and throat specialist, which only resulted in a different medication for reflux.
Armed with the new medication I, once again, pinned my hopes on the diagnosis, but it was a difficult time. Every morning when I woke up, I was scared that I had lost my voice completely. Every morning it took a while until I dared to speak to my cocker spaniel, Billy, since I could not imagine what I would do if I did not have a voice anymore. I was also worried about my leg muscles: it felt like they were getting weaker.
“This problem is a no-brainer”, I said to myself. I had chosen to pause my physical training during the pandemic and although it was a sensible decision, it came with a cost. For years that training had been an effective way of managing some of my MS symptoms. “Okay”, I thought, “I just have to clench my teeth and carry on. When the pandemic is over the nightmare with my voice and sedentary lifestyle will be history”.
But behind the tough talk, fear was creeping in. The spectre of MND had entered my life.
MND is the label for a group of neurological illnesses with amyotrophic lateral sclerosis (ALS) being the most common. In 2016, the worldwide all-age prevalence was 4.5 per 100,000 people. MND affects motor neuron cells in the brain and spinal cord. Motor neurons allow us to move, talk, swallow, and breathe by sending commands to the muscles that carry out these functions. With MND, the motor neurons progressively die, which ultimately leads to the loss of the functions.
At the end of the summer, I saw my MS neurologist and he referred me to a colleague to find what neurological illness was causing my voice problems. I had very mixed feelings. After more than a year of trying to get help from health professionals I was afraid of what I might hear from the neurologist.
Day of diagnosis
After a few weeks I went back to the hospital to see him. Throughout the physical examination, both the neurologist and his nurse seemed to know what it meant when he said that he observed that “she has a weak sniff”. I did not know what it pointed to and I could not find it within me to ask. But I knew that I felt exhausted – my body sank into the wheelchair as if I was getting ready to go to sleep. I was not. I was trying to make sense of what was happening to me. It didn’t work. At the end of the appointment, it all became clear; I was informed that I had MND. I had finally found out why my voice was weakening. I came out into the waiting room and looked at rows of empty chairs but within minutes my friend was there, ready to take me home. On our way out to the car-park I tried to appraise what the appointment and diagnosis meant to me and select ways of coping. But instead I started crying as if there were no tomorrow. My friend asked me again and again “What’s wrong Eva?” but I didn’t know where to begin.
Luckily I wasn’t alone, I spoke every day with my daughter and very often with my son, who supported me in coming to terms with the diagnosis, finding a way forward personally, and laying a plan for my future. My children also helped me formulate questions around the MND diagnosis that I had not asked during the appointment: what were the signs that led to a definite diagnosis? And, since there is no diagnostic test, how were other neurological conditions ruled out? With my children’s support I requested a second opinion, and this time I asked both a friend and my daughter and her family to come with me.
In one way, the second appointment was similar to the first. It included a thorough physical examination and an analysis of my medical history. But from a humane perspective, it was very different. Throughout the appointment, the neurologist talked to me about the clinical meaning of her observations and invited me to ask questions. And she explained that the examination had led to a provisional MND diagnosis which could not be confirmed until results from further tests were available. When the appointment was over and I was wheeled out to my waiting family I cried, this time with relief. Although I had learned that I probably did have MND, I had been listened to. I had been talked through the diagnostic procedures and findings. And I was around my loved ones.
After eight weeks, I received the official confirmation of the diagnosis. It would take months for the news to sink in. During that time I was also aware that MND provided me with opportunity to make new choices. But I needed time before I could benefit from them. The question constantly in the back of my mind was: will I have enough time?
I made one big choice early on: to move in with my daughter, her husband, and my one-year-old granddaughter. This step was difficult and disruptive for all of us, not least because we decided that it had to be taken urgently. The reason for the urgency was that it was impossible to say how quickly my condition would progress and therefore it was impossible to predict for how long I would be able to live on my own. But more importantly, for me, moving together with my daughter and her family gave me the opportunity to engage in close interactions with myself and my close ones during a difficult time.
Before we moved in together over Christmas 2020, it was clear to me that I would have continued to ignore myself and distance myself from others if I had continued living on my own. I felt like I was on a different planet and I could only find a way back if I was around the people I loved.
It was a good choice, every morning when I wake up I see lots of photos of my four grandchildren on my picture wall. I now have two granddaughters whom I live with and I have two grandsons. Although my grandsons live far away and so I don’t see them very often in person, I watch how they grow in the family’s online photo album.
Accept the losses
It soon became evident that making that choice was just the first step. Important choices were also linked to loss of functions such as swallowing, speaking, standing and walking as my muscles weakened. In order to make such choices I needed to take onboard my new life circumstances. One of the first signs that I was learning to accept the losses was related to my weakened swallowing which had resulted in frequent coughing when eating or drinking. I agreed to have a feeding tube inserted before it was a medical necessity. I felt proud of that decision. It seemed to tell me that I didn’t shy away from the fact that I would soon need to replace eating and drinking.
My new life situation also prompted me to consider whether I wanted to pursue the career change that I had initiated some 15 years earlier when I moved from Sweden to take up a position at Nottingham Trent University (NTU). I had originally studied to become a practising clinical psychologist and then became accredited as a cognitive behavioural therapist.
During that time, I was focused on developing my research alongside the work I was doing with my clients and other clinicians. This integration of clinical practice and research follows a strong tradition in North America, with internationally renowned experts such as the founding father of CBT, Aaron Beck, who died in 2021 at the age of 100 after having spent most of his life integrating cognitive science and clinical observations into his cognitive therapy.
I moved to Nottingham, driven by my desire to work in a more research-productive community than I was used to and to change the way I was working as an academic. My aim was to contribute new knowledge that could enhance social development. My new research strand was to examine everyday stress and psychological resources (such as emotion regulation and resilience) in people with vulnerabilities other than mental health problems; for example socio-economical deprivation.
Looking back, I immediately reaped the benefits of the move. I enjoyed a meaningful and creative work atmosphere at my university and I lived closer to my children in London and New York, respectively. But although I worked on developing my new research, I suffered increasingly severe health problems that interfered with my work. For example, in 2015, the progressive nature of MS resulted in weakened eyesight which stopped me driving my car. Three years later, the onset of MND included pronounced voice problems. During this time, I kept feeling that my research over the years was disjointed, and the completion of the career change would continue to linger in the distance. When we had moved together I wasn’t happy with what seemed like a failure to progress with my career change. But then my daughter said:
I don’t know what it is to be critical about really. You did what you wanted to do when you did it. Even if you now feel that it would be fun if you had made other choices, I think that you were quite happy with your choices at the time.
I knew that she was right and it became possible for me to be less hard on myself. A year after getting the MND diagnosis, I decided to file an application for promotion to professor, generously supported to do so by my university and my colleagues. My application was successful and I thought it didn’t make sense to retire just yet. My family gave me their full support. My son said:
Of course. You’re a bulldog. Keep bulldogging and don’t let go. Ever. Until you’re forced to … it’s good for you and your spirit.
Acceptance and Commitment Therapy
I had useful support from my daughter and son-in-law in making another important decision; to start Acceptance and Commitment Therapy, or ACT. ACT helps people find new ways to adjust behaviour which can result from some sort of trauma. The therapy helps people keep a hold on their personal values while at the same time accept those unwanted thoughts, feelings and bodily sensations. It may be particularly well suited to people with MND due to its principal notion that suffering is an inevitable and essential part of being human and can be a source of fulfilment when we don’t flee from what scares us.
ACT’s principal aim is to help people clarify what really matters to them and identify the type of person they want to be. For example, somebody who is acting caringly as a parent or creatively as a gardener. Different people have different barriers to a meaningful or, in ACT language, a values-consistent life. It also provides people with a variety of techniques that target the different barriers. For example, techniques to defuse unwanted thoughts, feelings and bodily sensations, or see them for what they are (streams of words and passing sensations), not what they “say” they are as they fly around your head (solid facts). The goal is to help people find new ways of interacting with and accepting these feelings as they can interfere with the things that really matter to them.
Researchers have found that ACT can help improve quality of life, mood states and functioning in people with various physical health conditions. Although it seems reasonable that ACT can be helpful for improving psychological wellbeing in people living with MND, no empirical study to examine this has been done yet. I asked Rebecca Gould, Professor of Psychological Therapies at University College London, to briefly explain what her and her team’s unique clinical trial of ACT for MND is about.
The COMMEND project is the largest clinical trial of any psychological treatment for people with MND to date. In the project’s first phase, ACT was adapted so that it would address the needs of people with MND. In the ongoing second phase, 191 people with MND have been chosen at random to either have the therapy plus usual care, or usual care only. The trial is exploring whether it can improve quality of life in people living with MND and whether it is good value for money (all psychotherapies are expensive with sessions costing £60 or more if delivered by private therapists, while ACT is available only in some NHS trusts). The results of the trial will be available in autumn 2023.
How ACT helps me
It is impossible for me to grade the importance of what I have learnt so far in my therapy. But it has been hugely important for me to realise that the person I used to think about as myself is still there. I might have fewer opportunities to let her talk, but I can choose to behave in ways that welcomes this part of me. The inner critic, the part of me that is turning against myself in anger is also present and has been feeding from the many losses that have come with MND.
In my therapy I have learned that self-acceptance can go a long way and I also learned how I can accept myself in my current everyday life with MND. My therapist and I have had many discussions about my values – in particular, I cherish acting in a caring way towards myself and others. I have also come to realise that it is next to impossible to engage in close, emotional interactions unless I can acknowledge my anger and at the same time keep my self-criticism at bay. I can do this by using the bus metaphor, where I picture myself as driving a bus. On the journey many passengers come onboard including the inner critic who keeps scolding me. When they get too loud I ask them to quiet down and this helps me keep them under control.
Many people with MND need psychological support or therapy to manage the challenges and to adhere to treatment that can prolong life expectancy and improve psychological wellbeing.
ACT is a promising treatment that I believe can help more people like me. This is supported by feedback from one of the participants in the COMMEND project, Jennie Starkey. After she had received ACT for MND, she told the trial: “ACT has helped me so much. Mainly to accept the way I feel – acknowledge it, but not get hooked and caught up in my emotions. It is enabling me to mainly live without the future ruining the present”.
Of course, the more research projects like COMMEND can do, the more we will understand. For now though, Jennie and I are using ACT to make one difficult choice at a time with the help of our family and friends. We may not be able to eradicate those feelings of anger and despair that can sometimes flood our minds, but now we know they don’t have to overtake our present or in-the-moment experience. We have found ways to live with them.
For help with some of the issues raised in this article, visit: www.mndassociation.org
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Emily Richardson from MND Association has provided support for this article. The COMMEND project is supported by the National Institute for Health Research (NIHR) Health Technology Assessment Programme (grant number 16/81/01) and the Motor Neurone Disease Association (grant number Gould/Jul17/936-794). The views expressed are those of the authors and not necessarily those of the National Health Service (NHS), the NIHR or the Department of Health and Social Care.
Rebecca Gould does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.