Mindfulness and Psychological Well-being in ALS

The 1% blog explores themes of hope, wellness and discovery in the context of MND / ALS. The author is not a healthcare professional; this article is for informational purposes only and does not construe medical advice. Please consult a healthcare professional about your own healthcare needs.

When we think of a diagnosis like MND / ALS, we can easily understand some of the physical challenges that come along with it; mobility issues, fine motor skills, challenges with swallowing and so on. Often, it’s harder to grasp the mental and emotional challenge of facing a relentless disease, associated with inevitable decline.

After my diagnosis, I quickly realised that my mind would be a key battleground in my journey. To remain an effective parent and husband, whatever my physical condition, I knew I’d have to work hard to keep my psychological wellbeing in good shape, otherwise I feared I might slip into a depression that I might not be able to get out of.

I found that the role of psychological wellbeing in people living with ALS / MND had been researched in a 2015 study involving renowned Harvard professor, Dr Ellen Langer. Dr Langer is known as ‘the mother of mindfulness' but marks a distinction between meditation mindfulness and her own definition of mindfulness, which she describes in simple terms as 'actively noticing new things.’ Dr Langer has been involved in many remarkable studies relating to the mind’s influence on the body, including one showing that perceived time, rather than real time, influenced the blood sugar levels in diabetics.

One of Dr Langer’s most famous studies is known as The Counterclockwise Study. A group of men aged in their 70s were placed into a retreat that had been styled to resemble their youth. All of the décor, books, magazines, TV shows, and records dated from decades earlier, and the men were instructed to immerse themselves in the experience, behaving as if they were their younger selves and talking about things in the present tense. After several days in the retreat, all of the participants’ biomarkers were improved—vision, hearing, memory, and strength—compared to a control group who did the same retreat but without the time-reversal elements. Dr Langer’s body of work shows us that mindfulness has been positively associated with physical well-being, better recovery rates from disease or infections, pain reduction and overall quality of life (QOL).

Her 2015 study looked at a sample of 197 people with ALS. Measurements were taken of trait mindfulness, physical impairment, QOL, anxiety and depression, with a duration of four months between 2 assessments.

Results showed that mindfulness positively influenced the change of physical symptoms and that subjects with higher mindfulness experienced a slower rate of progression over the four months. Mindfulness scores at the first assessment predicted higher QOL and psychological well-being at the second assessment.

From the study: “Conclusions: The available data indicate that a psychological construct - mindfulness - can attenuate the progress of a disease that is believed to be almost solely biologically driven. The potential implications of these results extend well beyond ALS.”

Remember, Dr Langer’s definition of mindfulness is, “actively noticing new things.” Many people diagnosed with a chronic illness naturally assume it will always and only get worse. In Dr Langer’s book, The Mindful Body, she reports that by paying attention to symptom variability (mindfully checking on symptoms at random intervals), we see that symptoms get better at times and also helps us identify why they got better. Further, Dr Langer has found that the act of simply looking for a solution to a chronic illness leads to better outcomes.

We can acknowledge that MND / ALS is an incredibly difficult diagnosis and that not every day will be easy. It’s easy to assume that each day will be harder than the one before, and so on and so on, but that hasn’t been my experience. Don’t get me wrong - the days since my diagnosis have been some of the hardest days of my life - I’m not denying that at all. We’ll still have hard moments and bad days, but mindfulness - simply noticing how we are feeling and why - is one simple way to regain some control, cut away from the weight of the challenge we’re facing and improve QOL.

I stand with you.