Self-compassion Through Mindfulness Benefits ALS Patients
The practice, backed by a recent study, is part of my self-care routine
An email that landed in my inbox the other day made me sit up and take notice. It was from a dear friend who is a care services coordinator for the ALS Association of Wisconsin. She shared a link to an article about a recent study on mindfulness and self-compassion for people with ALS.
I know this wouldn’t be a knee-slapping moment for most folks, but my wise friend knew it was right up my alley. And she was right.
My history with mindfulness
As many readers of this column know, I’m a dyed-in-the-wool advocate of all things wellness, including mindfulness. Especially now that I live with ALS.
I was introduced to mindfulness during the 1980s, when, as the manager of a hospital-based wellness program, I taught a course developed by Jon-Kabat Zinn called “Mindfulness-Based Stress Reduction.” It was a popular course that helped students cope with stress, anxiety, pain, and illness.
Fast forward to my diagnosis of ALS in 2010. At first, I used mindfulness to help me pay attention to my actions to help me avoid falling, choking on food, or spilling drinks. Jokingly, I called it being in manual mode.
However, my mindfulness practice also kept me from those never-ending thought loops and imagining worst-case scenarios of my future that all newly diagnosed patients experience.
Focusing on self-compassion
What held my attention in my friend’s article was the twist, the focus on the other aspects of mindfulness: self-compassion, loving-kindness, and common humanity. It’s learning to turn toward whatever is happening in the present moment and to be mindful that this is the way life is right now, at this moment — or as another friend once said to me, “closing the gap between reality and the way we thought our life would be.”
For the past 12 years, I’ve been on a quest to spread the word about the benefits of mindfulness for people living with ALS. I’ve written numerous columns and even made a presentation at an “Ask the Experts” seminar sponsored by the Arizona chapter of the ALS Association in 2017.
Mindfulness is the underdog
I’ve always wondered why, for all its many values, mindfulness has never found much traction in the ALS community. Perhaps it’s because it’s invisible, something you can do on your own, and doesn’t have the visual impact of a pill bottle or canister of herbal powder sitting on the kitchen counter. There’s no financial gain for a pharmaceutical company; it’s free, and we’re in charge of our own daily refills.
Which to me is what makes practicing mindfulness so appealing. An ALS News Today article, “Mindfulness May Improve Depression, Quality of Life in ALS Patients” by Joana Fernandes, PhD, describes how ALS patients in a 2017 study found improvements in their quality of life with mindfulness, compared with the patients receiving usual care.
My friend in Wisconsin and I agreed. We both hoped that the eight-week online course “Compassion pALS,” which was the basis of the pilot study in mindfulness at the ALS Center at Washington University, would be offered again and by other ALS clinics as well. Soon, I hope.
I encourage you to try mindfulness as a daily practice. It’s one more positive coping strategy in our pursuit to live well with ALS.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
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