Music.ALS: clinical perspectives on a home-based music therapy treatment to improve breathing, speech, swallowing and cough of persons with ALS (MND)

Respiratory failure, malnutrition, aspiration pneumonia and dehydration contribute to mortality in ALS / MND, and loss of verbal communication impacts quality of life. There are few interventions that help with the management of these symptoms alongside pharmacological ones. Neurologic music therapy protocols, which are biomedical interventions, have been demonstrated to be effective for the treatment of human neurodegenerative disorders, but less so with ALS. Two case studies from a larger, published ALS study were selected for this new report to provide an insight into the practical aspects of music therapy treatment. The home-based protocol was designed to sustain bulbar and respiratory functions of persons with early and mid-stage onset. It was delivered to all participants twice-weekly for six weeks as a part of a 16-week ABA mixed methods study. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation, personal impressions) and 34 biomedical outcome parameters for bulbar and respiratory changes were collected. The two studies highlight the differences in therapy process between participants – one with a spinal onset, slow progression ALS and another with a bulbar onset, rapid progression. In both cases, music therapy was tolerated well and perceived as pleasant, although moderately challenging. For both participants, developing the sense of agency played an essential role in the therapy process. Minor treatment protocol modifications were needed. Positive changes in the objective measures of respiration, cough, speech and swallowing were observed. Suggested individual adaptations of the experimental music therapy protocol included modifications of sitting posture, breathing technique, consonant changes in singing exercises, additional pauses and stretching, and changes to preferred song therapeutic performance. A pilot study utilising the modified protocol is called for, followed by an RCT to assess the clinical effectiveness of the innovative MT treatment.