Project Overview

Amyotrophic Lateral Sclerosis (ALS) is very much a disease of losses and adjustments. People diagnosed with this disease face a higher than normal amount of anticipatory grief specific to lost abilities, lifestyles, skill sets, social interaction and life. The need to readjust, grieve and reinvent oneself in the face of ongoing change is a constant.

The idea that the world is in a state of constant change, that is, nothing endures in a static state, is the epistemological background of mindfulness1. Mindfulness is being aware that everything can be perceived from different perspectives. This habit of perception can be learned, and several decades of study within the mindfulness field indicate that such learning may increase the ability to navigate grief and benefit quality of life (QoL). Specifically, recent research studies within ALS populations suggest that greater mindfulness in people with ALS (PWALS) correlates with a higher QoL 2-6. Therefore, mindfulness as a psychological component has been shown to be highly relevant for both PWALS and their primary caregivers (PC). The Montreal Neurological Institute and Hospital (MNI/H) ALS program seeks to contribute to QoL in PWALS and their PC by teaching an embodied mindfulness based approach that provides them with a heightened sense of perceived control around respiration.

Embodied mindfulness has been shown to increase one’s ability to develop and, more importantly, maintain a state of mindfulness 7-11. This project hypothesizes that mindfulness can be taught more readily to PWALS using a series of defined physical movements intended to increase the ability of PWALS and their PC to notice variability in their breathing patterns. It is anticipated that this increased awareness of respiratory patterns and variability would give PWALS a greater sense of perceived control and make mindfulness more tangible 12. Using a qualitative, action research approach that involves healthcare professionals (HCPs), PWALS, and PC, we would like to determine if increasing mindfulness in PWALS and PC would then improve QoL, with the goal of delivering better clinical outcomes. The specific aims of this project are to 1) train the MNI/H ALS program HCP using a Langerian mindfulness framework (LMF), 2) adapt the LMF to fit the specialized needs of the MNI/H ALS program, and 3) conduct a qualitative interventional study to investigate whether an embodied mindfulness protocol for PWALS and their PC achieves its goal of increasing and maintaining mindfulness, and whether this in turn influences QoL. The findings from this qualitative pilot study, the first of its kind in ALS, will be used to inform future clinical care in the areas of ALS and neurodegenerative disease, on the effects of mindfulness on QoL and potentially disease course in the future. It will present the ALS community with a potential model for the application of mindfulness-based interventions that impact clinical practice, HCP sustainability and care. Given that there is currently no cure for ALS and that the pharmacological interventions presently available only target slowing of disease progression and provide a modest increase in life span, any applicable skill set which facilitates maintenance and/or improvement of QoL may indicate a best practice approach.

Principal Investigator

Angela Genge , McGill University

Team Members

Francesco Pagnini, Università Cattolica del Sacro Cuore

Lana Kim McGeary, ALS Clinic, Montreal Neurological Institute

Antonietta Vitale, ALS Clinic, Montreal Neurological Institute

Kendra Berry, ALS Clinic, Montreal Neurological Institute

Maura Fisher, ALS Clinic, Montreal Neurological Institute

Kalyna Franko, ALS Clinic, Montreal Neurological Institute

Rami Massie, ALS Clinic, Montreal Neurological Institute

Partners and Donors

ALS Canada