Just breathe. It’s advice we’ve all been given at one time or another. Beyond the obvious physical need we all have to take in oxygen and emit carbon dioxide, the advice to “just breathe” is often a call to stop for a moment and just be aware of the act of breathing to re-center, re-focus, and re-set.
For people with ALS, such seemingly simple advice comes with its own set of emotional baggage, as ALS slowly robs a person of the ability to “just breathe.” Still, the idea behind the advice might have far reaching benefits for people with ALS in ways you might not imagine.
The ALS Center at Washington University is currently running a study on mindfulness and self-compassion for people with ALS called “Compassion pALS.” The online course was inspired by the Mindful Self-Compassion (MSC) program developed by Chris Germer (PhD) and Kristin Neff, (PhD). Dr. Sean E. Smith (MD, MPHS), the principal investigator of the study, has adapted their program specifically for people with ALS to address the emotional aspects of living with ALS. The pilot study was recently completed.
“There is limited research on enhancing quality of life for people living with ALS. Therefore, it’s especially important to conduct research into interventions to address the psychological needs and well-beings of people living with ALS,” says Dr. Smith. “There are struggles, frustration, and suffering that comes with this disease. Compassion pALS gives an opportunity to learn mindfulness and self-compassion skills and apply them to living with ALS. In short, the skills allow someone to treat themselves with the same loving-kindness as they would a friend who was struggling or having difficult emotions.”
As Dr. Smith explains, self-compassion has three components: mindfulness, loving-kindness, and common humanity. While everyone could benefit from an increased level of awareness of these concepts, for someone facing a disease like ALS, learning to apply these concepts to daily life can be helpful in finding a path to living in the moment.
“With any chronic disease or illness, it can be hard to accept the diagnosis and recognize that the life one planned on will require changes and the future seems less certain,” says Dr. Smith. “During everyone’s lifetime there will be birth, aging, sickness, health, death, grief, loss, pain, as well as joy, happiness, and gratitude. We all face these experiences over the course of our lives. This happens differently for each person. Acceptance is turning toward whatever is happening in the present moment and to be mindful that this is the way life is right now in this moment. It is learning to accept those things we cannot change then live a meaningful life within the present circumstances.”
The Compassion pALS program was designed to include participants at various stages of ALS. The online format of the program includes an opening guided mediation with an opportunity to share about the experience. Another portion of the program includes practice in supportive touch, which asks participants to be mindful of a challenging situation or difficult emotion and practice placing a hand on the heart or cheek—or through visualization for those with limited movement—to activate the parasympathetic nervous system to provide a sense of calmness and safety. Participants are also guided to identify their core values and what makes life meaningful to them and how they can incorporate these into daily living with ALS.
“There is growing research that shows mindfulness can improve quality of life and well-being in people with chronic diseases. There have been several studies that looked at the benefits of mindfulness for people living with ALS. Mindfulness can improve quality of life as well as depression and anxiety symptoms,” says Dr. Smith. “No studies to date have evaluated the use of a mindfulness that focuses on cultivating self-compassion to improve quality of life in ALS. We wanted to focus on self-compassion because research on self-compassion has been shown to increase mindfulness, emotional resilience and well-being, as well as reducing stress, anxiety, and depression in other populations.”
Now that the pilot has been completed, Dr. Smith and his team are evaluating the results to determine if the program meets the needs of people living with ALS and their caregivers. If the results are positive, Compassion pALS could be implemented as an eight week course offered as part of the multidisciplinary ALS care provided at the Washington University ALS Center, with the hope that program could be unitized by other multidisciplinary ALS clinics in the future.
While the review of the program is ongoing, Dr. Smith has found that he has learned from the people with ALS in the study as well as them learning from the program. “The enthusiasm of the participants has been really surprising. It was not clear how participants might respond to becoming mindful of the challenges of living with ALS and be invited to discuss these in such a forum,” says Dr. Smith. “There is no requirement that participants share their life story or most difficult struggles. One of the participants stated ‘We all have a fear of death, it’s not just for us. No one escapes it. It’s just we know ahead of time and most don’t.’ Compassion pALS brings light to these topics and provides a space where this can be shared.”
In a perfect world, we’d all be good at self-compassion and mindfulness without practice. But the reality is for many of us is that we need reminders—and practice—to do so. This is perhaps even more so for people facing a disease like ALS. A program such as Compassion pALS has the potential to add yet another layer of service to care offered to people with ALS through the multidisciplinary care model to help them live their lives as they choose. Because ALS does not stop, and neither do we.