This is how a new psychological therapy helps me live with my serious neurological illness

As a new drug offers a ray of hope to a small percentage of people with motor neurone disease, psychology professor Eva Sundin offers extraordinary insight into what it's like to be diagnosed with this terrifying disease and how a form of psychological therapy It is helping you cope with a rapidly changing life.

The discovery came when my therapist showed me photographs of the impact a dam can have on the surrounding landscape when it fails. Its function is to defend and protect. But if cracks appear in the wall, the dam bursts, causing a flood that can destroy everything in its path.

The photos showed me what I do to myself and my relationships with my family and friends when I suppress feelings. I was already aware that containing my anger and sadness did not make those feelings go away, but this was different.

Suddenly, I realized I had a choice. I could continue to push away the negative feelings, knowing full well that sooner or later they would end up flooding other parts of me. Or I could learn to live with them. It seemed like an easy choice. But for someone like me, the next question was: How much time will I have to remove those barriers?

A devastating illness
I have motor neuron disease (MND). At least, that's what the doctors tell me. In fact, there is no test to diagnose it, but rather clinical examinations and electrophysiological tests are performed to rule out the presence of other neurological conditions.

MND is the name for a group of neurological diseases, among which amyotrophic lateral sclerosis (ALS) is the most common. In 2016, the global prevalence was 4,5 cases per 100 people. It affects motor neuron cells in the brain and spinal cord.

Motoneurons allow us to move, speak, swallow and breathe by sending commands to the muscles that perform these functions. With MND, those specialized nerve cells progressively die, ultimately leading to the loss of physiological functions. There is currently no cure and life expectancy is two to three years after the appearance of symptoms.

A little over two years ago, in 2020, I received the news rather abruptly. But I'm lucky in some ways. As a practicing clinical psychologist, she was already familiar with acceptance and commitment therapy (ACT), a relatively new type of psychological therapy that helps people find new ways to adjust their behavior, which can be necessary after experiencing a trauma; In my case, a diagnosis that changed my life.

ACT helps me accept myself even when I can't stand some of the things MNE has done to me. For example, lately I find it too painful to see myself on a video call. This is because I don't recognize that person with the muscles around their mouth and throat weakened. ACT has helped me realize that I have a choice: I don't have to force myself to face losses that are unbearable.

Instead, I have learned to comfort myself even when the mere thought of seeing myself in motion makes me cry. We have only limited knowledge of the psychological impact of the disease on people in its different phases, and we know little about what psychological interventions might work. For now, I am using my personal experiences and professional training to help shed light on these gaps for the benefit of those affected by MNE in the future.

Losing my voice was just the beginning
I am a perfect example of someone who downplays illnesses until there is no choice but to turn to doctors. In early spring of 2019, I noticed that my voice had weakened significantly. This was not entirely new. The year before he had also experienced some trouble speaking. It could happen suddenly, and often in the middle of my psychology classes.

I knew my voice was becoming a real problem when my students seemed to lose interest in listening to me explain things like traumatic experiences in children and young people. I blamed my vocal problems on the progressive neurological disease I also suffer from, multiple sclerosis. I asked my boss to change my workload so I could only teach small groups and I trained my voice on the computer to try to solve it.

Finally I contacted a speech therapist who worked at the multiple sclerosis clinic I attended. She informed me that the waiting list was very long. So, after a few months, I decided to look for alternative support and found a voice coach in London.

Full of excitement, I attended my first session. I was sitting in my wheelchair in front of what looked like a piano store. “Something is wrong here,” I thought. A friendly man opened the door for me and directed me to the elevator on the other side of a large room with many upright and grand pianos. I took the elevator to the second floor, where my singing teacher gave me a warm welcome. She showed me the way to a small room with a few chairs and a grand piano, and before beginning the vocal exercises, she explained to me why good posture is essential to maintaining a healthy voice.

At the end of that first session, we agreed that we would have monthly in-person sessions. That was the case for a couple of months, but when the first Covid-19 lockdown was announced, my vocal training was interrupted. At that moment I thought it was a temporary break and that I would get back to it soon.

As we all know, that didn't happen. Time passed quickly and my speech difficulties worsened. I became anxious to understand what was happening. I often talked about the problem with my family and we wondered if it could be due to Lyme disease and not multiple sclerosis.

I contacted my GP who said it could be acid reflux. When it is abundant, this can cause quite a bit of inflammation in the vocal cords and change the voice, so he prescribed me medication. At the time, I thought it was good to try it, even though I didn't have the typical symptoms of acid reflux: heartburn and indigestion.

Despite taking the medicine for weeks and continuously training on the computer, I did not improve. I sent voicemails to the nurses at the MS clinic and, receiving no response, called my GP again and asked if it could be silent reflux. I had read on the internet that this reflux does not cause heartburn or indigestion, but it can damage the larynx. He told me it was possible and referred me to a gastroenterologist and a speech and throat specialist. The only thing they did was prescribe me a different drug.

Equipped 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 afraid that I had completely lost my voice. Every morning, it would take a while before I dared to talk to my English Cocker Spaniel dog, Billy, as I couldn't imagine what I would do if I lost my voice. I was also worried about my leg muscles: I felt like they were getting weaker.

“Obviously, I have a problem,” I told myself. I had chosen to pause my training during the pandemic, and while it was a sensible decision, it came at a cost. For a long time, such physical activity had been an effective way to control some of the symptoms of my multiple sclerosis. “Okay,” I thought, “I just have to grit my teeth and move on. When the pandemic is over, the nightmare of my voice and sedentary lifestyle will be history.”

But behind my firm words fear was hidden. The specter of MNE had entered my life.

The day of diagnosis
At the end of the summer, I visited my multiple sclerosis specialist and he referred me to a colleague to find out what neurological disease was causing my voice problems. I had mixed feelings. After more than a year of trying to get help from health professionals, I was afraid of what the neurologist would tell me.

After a few weeks I returned to the hospital to see him. During the physical exam, both the specialist and his nurse seemed to know what it was about when he said he noticed that I had “a weakened sense of smell.” He didn't know what he meant and I didn't dare ask. What I did know is that I felt exhausted: my body sank into the wheelchair as if I were getting ready to sleep. But it wasn't like that. I was trying to make sense of what was happening to me. I didn't get it.

At the end of the consultation, everything became clear: I was informed that I had motor neuron disease. I had finally discovered why my voice was weakening. I went out to the waiting room and looked at the rows of empty chairs, but the friend who had accompanied me there soon appeared, ready to take me home.

On the way to the parking lot, I tried to assess what the consultation and diagnosis meant to me, and choose ways to deal with the situation. But I started crying uncontrollably. My friend asked me over and over again: “What's wrong with you, Eva?”, but I didn't know where to start.

Luckily I wasn't alone. I spoke every day with my daughter and very often with my son, who helped me accept the diagnosis, find a personal path and make a plan for the future. My children also helped me ask questions that I had not asked myself during the consultation: what were the signs that led to a definitive diagnosis? And, since there is no diagnostic test, how were other neurological diseases ruled out?

With the support of my children, I requested a second opinion and, this time, I asked both a friend and my daughter and her family to accompany me.

In some ways, the second date was similar to the first. It included a thorough physical exam and a review of my medical history. But from a human perspective, it was very different. During the consultation, the neurologist explained the clinical significance of her observations and invited me to ask questions. And she explained to me that the test had led to a provisional diagnosis of motor neuron disease that could not be confirmed until the results of other tests were available.

When the consultation was over and I was wheeled away to my family, I cried again, but this time with relief. Even though I had learned that I probably had MND, they had listened to me. They had explained to me how the diagnosis and the results had been reached. And I was with my loved ones.

New options
After eight weeks, I received official confirmation of the diagnosis. It would take months for the news to sink in. During that time I was also aware that the MNE gave me the opportunity to make new decisions. But I needed time before I could benefit from them. The question that was constantly on my mind was: will I have enough time?

I made an important decision early on: to move with my daughter, her husband, and my one-year-old granddaughter. This step was difficult and disturbing for everyone, especially because we decided that it had to be taken urgently. The rush was because it was impossible to know how quickly my illness would progress and therefore it could not be predicted how long I would be able to live alone. And most importantly for me, moving gave me the opportunity to connect with myself and my loved ones during a difficult time.

Before we moved in together for Christmas 2020, it was clear to me that he would have continued to ignore me and distance me from others if I had continued living alone. I felt like I was on another planet and I could only find my way back if I was close to the people I loved.

It was a good choice. Every morning when I wake up, I see the photographs of my four grandchildren hanging on the wall. Now I have two granddaughters, with whom I live, and two grandsons, who live far away. I don't see the latter very often in person, but I witness how they grow in the family's online photo album.

Accept the inevitable
It soon became clear that this was only the first step. Important decisions were also related to the loss of abilities such as swallowing, speaking, standing and walking as my muscles weakened. In order to make those determinations, I had to accept my new life circumstances.

One of the first signs that I was learning to accept the situation was related to my deteriorating ability to swallow, which caused me to cough frequently when eating or drinking. I agreed to have a feeding tube placed before I absolutely needed it. I felt proud of that decision. It seemed to tell me that he wasn't shying away from the fact that soon I wouldn't be able to put anything in my mouth.

My new life circumstance also led me to consider whether I wanted to continue with the career change that I had begun some fifteen years earlier, when I moved from Sweden to take a position at Nottingham Trent University in England. I had originally studied to be a practicing clinical psychologist and then became accredited as a cognitive behavioral therapist.

During that time, I focused on combining research with the work I did with my clients and other colleagues. This integration of clinical practice and research is deeply rooted in North America, with internationally renowned experts such as the founding father of cognitive behavioral therapy, Aaron Beck. Beck died in 2021 at age 100 after spending most of his life integrating cognitive science and clinical observations into his therapy.

I moved to Nottingham driven by my desire to do research in a more productive community than I was used to and to change the way I work as an academic. My new line of research involved examining everyday stress and psychological resources (such as emotion regulation and resilience) in people with vulnerabilities other than mental health problems; for example, socioeconomic deprivation.

Looking back, the move paid off quickly. I enjoyed a creative and meaningful work environment and lived closer to my children in London and New York. But I also suffered increasingly serious health problems that interfered with my research.

For example, in 2015, the degenerative nature of multiple sclerosis weakened my eyesight to the point that I had to stop driving. And three years later, as I have already explained, the onset of motor neuron disease severely affected my voice. During this time, I continued to feel that neither my research nor my career change had quite come together.

Later, when I moved in with her, my daughter told me, “I see no reason for criticism. You did what you wanted. Although now you think it would be fun to have taken other paths, I think at the time you were quite happy with your decisions.”

I knew he was right and so I could be less hard on myself. A year after being diagnosed with MND, I decided to apply to become a professor, with the generous support of my university and colleagues. My request was successful; It didn't make sense to retire yet. My family gave me all their support. My son told me: “Of course. You are a bulldog. Stay a bulldog and don't quit. Never. Until you are forced. “It’s good for you and your spirit.”

Acceptance and commitment therapy
My daughter and son-in-law helped me make another important decision: starting acceptance and commitment therapy (ACT). ACT helps people find new ways to adjust behaviors that may be a result of some type of trauma. It may be especially suitable for people suffering from motor neuron disease, since its main idea is based on the fact that suffering is an inevitable and essential part of being human and can be a source of fulfillment when we do not flee from what scares us. .

The main goal of ACT is to help people clarify what really matters to them and identify the type of person they want to be. For example, someone who acts lovingly as a parent or creatively as a gardener. Everyone has to overcome their own barrier to lead a meaningful life or, in ACT language, consistent with values.

It also provides people with a variety of techniques aimed at breaking down these obstacles. For example, techniques to deactivate unwanted thoughts, feelings and body sensations. Or see them for what they are (streams of words and fleeting sensations) and not what they say they are while they fly through your head (concrete facts). The goal is to help us find new ways to interact with and accept these feelings, as they can interfere with the things that really matter to us.

Researchers have found that ACT can help improve quality of life, mood, and normal functioning in people with various physical illnesses.

And although it seems reasonable that ACT could be useful in improving the psychological well-being of MND patients, no empirical study has yet been conducted on this. I asked Rebecca Gould, professor of Psychological Therapies at University College London, to briefly explain what the ambitious work she and her team are carrying out in this regard consists of.

The COMMEND project is the largest clinical trial of any psychological treatment for people with motor neurone disease conducted to date. In its first phase, ACT was adapted to address the needs of affected people. And in the second stage, now underway, 191 people with MND have been randomly chosen to receive the therapy along with usual care or only the latter.

The trial explores whether ACT can improve the quality of life of people with MND and whether it is cost-effective (all psychotherapies are expensive, with sessions costing £60 or more if delivered by private therapists, while ACT is only available in some centers of the British public health system). The results of the trial will be available in autumn 2023.

How ACT helps me
I find it impossible to express the importance of what I have learned so far from my therapy. But it's been hugely important for me to realize that the person I used to think of as myself is still there. I may have fewer opportunities to let her speak, but I can choose to behave in a way that welcomes that part of me. My critical self is also present and has been feeding on the many losses that the EMN has entailed.

Thanks to ACT I have learned that self-acceptance can go a long way, and also how I can accept myself in my current life with MND. My therapist and I have talked a lot about my values; in particular that I like to act in a loving way with myself and with others.

I've also realized that it's nearly impossible to engage in close, emotional interactions unless I can acknowledge my anger while also keeping my self-criticism at bay. I can do this by imagining that I am driving a bus. Many passengers get on the trip, including the inner critic who doesn't stop scolding me. When he makes too much noise, I ask him to calm down, which helps me keep him under control.

Many people with MND need psychological support or therapy to cope with challenges and pursue treatment that can prolong life expectancy and improve psychological well-being.

ACT is a promising technique that can help more people like me. This is supported by the comments of one of the participants in the COMMEND project, Jennie Starkey, who said: “ACT has helped me a lot. Mainly to accept how I feel, to recognize it, but without getting hooked or getting caught up in my emotions. Above all, it allows me to live without the future ruining the present.”

Of course, the more research projects like COMMEND are carried out, the more we will know. For now, Jennie and I are using ACT to make difficult decisions with the help of our family and friends. We may not be able to eradicate those feelings of rage and despair that sometimes flood our minds, but we now know that they do not have to dominate our experience. We have found ways to live with them.

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Source: The Conversation. Authorship:

Eva Sundin
Professor of Psychology, Nottingham Trent University

Rebecca Gould
Professor, Division of Psychiatry, UCL

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