“Huntington’s disease was first known as Huntington’s chorea, as in choreography, the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dancelike motion. It is a hereditary, degenerative brain disorder for which there is no effective treatment or cure.”
–Watching Their Dance, pp. 11
In one life-altering moment, Therese Crutcher-Marin learned that the man she loved and his three beloved sisters were at risk for one of the most devastating genetic diseases: Huntington’s Disease. In Watching Their Dance, Crutcher-Marin recounts her journey of love, uncertainty, loss, and strength in the face of Huntington’s Disease. She tells a vivid and personal story of the experience of loving someone at risk for Huntington’s Disease, meticulously sharing the details of her fears, the symptoms of the disease itself, the care-partner experience, and the loss that inevitably comes with Huntington’s. Thrown into the wildly unsteady and frightening path of Huntington’s, Crutcher-Marin returns repeatedly to the mantra, “nothing is certain in life.”
Crutcher-Marin weaves in details of her personal struggle with uncertainty, a daunting challenge for a woman averse to taking risks. She skillfully captures the awkwardness and difficulty in breaching the subject of Huntington’s with loved ones, and expresses a deeply personal account of her anxiety and suspicion as she worries that she can see the beginning of Huntington’s symptoms in her husband and friends. The book shows the diverse ways in which Huntington’s Disease can manifest itself in daily life to affect both patients and their care partners.
The book reads easily, a captivating and accessible memoir and love story that gently pulls the reader in until one cannot help but care deeply for the characters. The reader follows Crutcher-Marin’s journey as she learns that she could lose John and his sisters to Huntington’s, finds the strength and resolve to stand by them in the face of unpredictability and devastating loss, and ultimately learns to embrace life and uncertainty with unconditional love.
Watching Their Dance offers a wide range of insight into living at risk for Huntington’s, living with Huntington’s, and caring for someone with Huntington’s. It is a worthwhile read for a broad audience: those affected by Huntington’s Disease, those curious about the disease, or those who know nothing of the disease but wish to read a captivating and insightful memoir. Despite the heavy topic of Huntington’s Disease, Crutcher-Marin writes an uplifting and beautiful love story, a meaningful tribute to her sisters-in-law who passed away from Huntington’s. Proceeds from Watching Their Dance are donated to the Huntington’s Disease Society of America (HDSA).
“[Music therapy] is an extraordinary modality, which […] can bring ability where there’s been disability, and freedom where people have been locked in, and it gives delight to people”
-Oliver Sacks, M.D. Consulting Neurobiologist and Author, Beth Abraham Hospital.
Music as a form of clinical therapy has been a growing field for some time. The American Music Therapy Association defines Music Therapy as “the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.” This less conventional form of therapy is increasingly recognized as an effective and attractive form of intervention for a wide range of healthcare fields.
What defines music therapy?
Music can be a positive experience in many forms, from listening to an iPod to playing the piano. Bedside musicians are a popular use of music in a healthcare setting. However, Music Therapy is set apart as a field and profession distinctly defined and strongly research based. To practice music therapy, music therapists must meet rigorous criteria including a degree in music therapy and a specific credential from the Certification Board for Music Therapists. Thus, music therapists have extensive knowledge of psychology, medicine and music. Therapists begin the client relationship with an assessment of the patient, which helps them to create a specific, personalized treatment plan. Music therapy can include choosing and listening to songs, singing, and playing instruments. The therapist continues to evaluate the patient’s progress throughout the course of treatment, and is therefore able to quantify and interpret a patient’s progress and evaluate the best course for treatment going forward.
Effects of music therapy
Music Therapy has been found to be effective for a remarkably wide range of conditions. In “Partnerships in Care: Uses of Music Therapy in Medical Settings,” a documentary film on music therapy by the American Music Therapy Association, a consulting neurobiologist explains that a person’s response to music is widespread and robust in the brain, and thus patients with different areas of brain damage or diffuse diseases can still respond to music. The measurable impacts of music therapy have been studied in wide range of clinical settings, from trauma patients to cancer patients to patients with neurological damage. Several studies have looked specifically at Huntington’s Disease, and quite a few more have studied the impact of music therapy on applicable aspects of Parkinson’s.
These studies have shown that Music therapy, particularly the instrument-playing aspect, can improve motor functioning, structure movement, and decrease muscle tension. Studies of music therapy and Parkinson’s disease have found that it can significantly reduce bradykinesia, (slowness of movement), a common symptom of HD. Another benefit of instrument-playing therapy is the opportunity for “illness monitoring.” In other words, instrument playing allows patients to monitor their own physical abilities in the context of playing the instrument. The listening aspect of music therapy can also impact motor abilities. For example, the beat of music can help structure rhythmic movement such as walking.
Depression and emotional distress can be strongly influenced by music therapy as well. In general, music therapy has been shown to decrease psychological anxiety, lower stress hormone levels, elevate mood, provide a diversion, and improve motivation for therapy. Mood improvement from music therapy can be significant. One study found that after just a brief music therapy intervention, patients showed significant improvement in three categories: composed versus anxious, energetic versus tired, and agreeable versus hostile (Magee et al 2002).
In addition to mood improvement, music therapy has been found to help lower a patient’s coping front. Choosing songs allows the patient to identify difficult and painful feelings, relate such feelings to him/herself, and acknowledge the effect of illness on his/her life. Understanding and discussing song themes can be a step toward acknowledging his/her own coping process, and can lead to verbal exploration and acknowledgement. Instrument playing can also help a patient to develop a more able identity, and foster a sense of success and accomplishment. Additionally, music therapy creates a supportive and consistent relationship between patient and therapist.
In summary, music therapy is a non-invasive therapy option with a wide range of possible benefits that are relevant to Huntington’s. Further resources for understanding and exploring the option of music therapy are provided below:
Further Reading and Resources
- The American Music Therapy Association (musictherapy.org.)
- The Handbook of Neurologic Music Therapy by Michael H. Thaut and Volker Hoemberg
- Music Therapy in Palliative Care: New Voices by David Aldridge
- The Journal of Music Therapy
- Short film: Partnerships in Care: Uses of Music Therapy in Medical Settings by the American Music Therapy Association
- PBS Newshour: “The Healing Power of Music”
Aldridge, David. Music therapy in palliative care: New voices. Jessica Kingsley Publishers, 1999.
Magee, Wendy L., and Jane W. Davidson. “The effect of music therapy on mood states in neurological patients: a pilot study.” Journal of Music Therapy 39.1 (2002): 20-29.
Maranto, C. “Applications of music in medicine.” Music therapy in health and education (1993): 153-174.
Pacchetti, Claudio, et al. “Active music therapy in Parkinson’s disease: an integrative method for motor and emotional rehabilitation.” Psychosomatic medicine 62.3 (2000): 386-393.
Partnerships in Care: Uses of Music Therapy in Medical Settings. Youtube.com. American Music Therapy Association, 14 Mar. 2014. Web.
Paul, Stanley, and David Ramsey. “Music therapy in physical medicine and rehabilitation.” Australian Occupational Therapy Journal 47.3 (2000): 111- 118.
Thaut, Michael H., and Volker Hoemberg, eds. Handbook of neurologic music therapy. Oxford University Press (UK), 2014.