Fostering hope through music therapy with people with Motor Neurone Disease

Motor Neurone Disease (MND) is a chronic progressive neurological illness. It is unrelenting in its progression, not only physically but also emotionally, socially and spiritually. One patient has described it as “being locked in a prison inside my own body”. MND has been described as an illness of constant losses: the person must adjust to changes every day of another thing they cannot do.

In contrast to other life threatening illnesses, there is no cure and many people with MND are faced with a sense of hopelessness, whereas others diagnosed with illnesses such as cancer often maintain a sense of hope through curative measures. Little literature is available covering music therapy and MND (Erdonmez, 1994 and Salmon, 1994), therefore this paper is opening a new area for discussion.

Hope is often attached to treatment, whether it is for curative or palliative measures. However, for the person with MND that is not possible. In response to this, their view of hope will be affected. Kim (1990, cited Gallagher & Munroe, 2000) suggests that “an individual’s level of hope determines whether human beings live or die” and identifying what hope means to the person with MND is important in their psychosocial care. Herth (1990) identifies seven areas that promote hope including interpersonal connectedness, uplifting memories and affirmation of worth, and also lists issues known to threaten hope including abandonment, uncontrollable pain and devaluation of personhood.

Music therapy is well known for its ability to acknowledge a person’s capabilities rather than their deficits. With this in mind, the author has based her work in a unique community setting with people with MND. Case vignettes, with musical examples, will be used to highlight music therapy’s role in promoting hope through the therapeutic relationship, such as being musically creative, using music that has significant memories and engaging music to meet spiritual needs (Alderidge, 1996). Challenges, such as the difficulty communicating with people who have lost their physical abilities, and working with family members, will be discussed. As medical technologies continue to advance and more people are diagnosed with MND, many music therapists will be faced with working with people with MND.

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Gallagher, D. & Monroe, B. Psychosocial Care. In Oliver, D. Borasio, G.D. & Walsh D. eds. Palliative Care in Amytrophic Lateral Sclerosis. Oxford University Press; 2000; 83-103.

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