For Music Therapists, Sunniva Ulstein Kayser, music is an important channel for communication. Read more about how music therapy can help in establishing and maintaining interaction with Huntington’s patients.
By using Sound Beam – a music installation that transforms movement into music – Sunniva and patients at the Huntington department at NKS Olaviken is able to interact together without using words.
– It helps both me and the person to understand each other and it gives an equal platform for communicating, Sunniva says.
Find the video and Sunniva’s article below.
“Did you know that chorea means «to dance»”?
“Hi Tom, you are making music now
You are making music together with me.
Hi Tom, are you there”?
This small vignette is from a music therapy sessions trying out Sound Beam for the first time with “Tom” (the name has been changed due to preservation of identity), a 55 year old man suffering from Huntington Disease. Tom has no verbal language left and needs help for everything in his daily life. The staff finds it hard to interact with him; he makes a lot of sounds and has involuntary movement – chorea, in his head and neck. His responses are vague and it is difficult to understand what the intentions of his sounds are. Rarely does he make eye contact. The staff is still quite certain that he understands what is being said to him and what is happening around him. In his young days he played in a blues band and both I and the staff observe that he still respond to music in a positive way.
Can the use of Sound Beam – a music installation that transforms movement into music increase the possibilities of establishing and maintain contact and interaction with patients like Tom? This is the starting point for this article presenting case studies from music therapy settings using Sound Beam together with patients in mid to late stage of Huntington Disease.
1.2 Finding ways to act and interact
When I first started out as a music therapist at the Neuropsychiatric Department for Huntington disease at NKS Olaviken, one of the residents said to me: “Did you know that Chorea means “to dance”? Besides this actually being a true fact, it became an important focus in my clinical work. Professor in Music Therapy, Even Ruud once said: “Music Therapy is the use of music to give people new possibilities to act” Ruud (1990) and this is one the core aspects of my clinical work. Even though the disease has made it hard to participate, act and interact as one did before, it does not mean that the person can`t do this anymore. One has to find other ways to make the person and his surrounding feel that he acts in a meaningful way.
When saying that chorea means to dance, one can actually put the symptoms of chorea into a meaningful and positive frame, to say it short; the choreatic movements can be a way to “act” and interact with others in a musical format; a format where dancing suits just perfectly.
With this in mind, I felt the need to find some kind of tool that addressed the symptoms and yet promoted resources and experiences of mastery and this was the starting point of the Sound Beam project.
1.3 Sound Beam
Sound Beam is a musical installation that transforms movement into music. It was built on the idea of the Thereminvox, invented by the Russian composer Leon Theremin in the 1920s. Sound Beams originator Edward Williams used the Therminvox as an inspiration for creating the Sound Beam – a device which would enables dancers to create and shape the music accompanying their own body movements. The first Sound Beam saw it`s daylight in 1984. Since that time, it has been used not only by dancers, but also rock bands and in schools, especially with children with special needs (soundbeam.co).
The Sound Beam consist of two ultrasonic sensors that transforms movement into sound in addition to a box with pre-loaded sound sets that accompanies the sounds made by the sensors. One can choose between a wide range of musical genres, from classic music, to blues, rock, jazz, club music and familiar songs. One can also improvise over sounds from nature, to horror-movie effects and comics.
Based on its design, the Sound Beam is an easy and accessible tool for music-making and can create meaningful experiences of musical interaction for the person and his/her surroundings. It has been used by music therapist working with persons with HD, in example in the Netherlands. Still, the experience of using it with this patients group has not been documented in any written format and so this article is an attempt to do so.
The case descriptions are based on video recordings, logs and clinical observations during individual music therapy interventions. The project is ethically approved by REK and the closest relatives of the persons presented here have all given their approval for documenting the sessions.
2. CASE PRESENTATIONS
Lars is a 32 year old man, with a juvenile form of Huntington Disease. He has barely any language left and it’s hard to understand the few words and sentences that he is trying to express. In January 2018 he comes to Olaviken for a short term stay.
Lars has a lot of physical pain due to muscle tensions. He often sits in unfavorable positions in his wheelchair and due to lack of control over his movements; it is hard for him to mobilize himself to a better sitting position. His chorea is most dominant in his arms, fingers and head.
In my meeting with Lars I sense a musical interest that is still alive, but needs to be fostered. In a conversation with his relatives they tell that he has always liked music, though never played any instruments himself. In his teenage years he used to hang out on the local youth club, where he eventually became a DJ. Some years later he and his brother started a sound company and hosted music arrangements in his local environment. This went on for several years until the development of Huntington disease forced him stop.
When I and Lars first started out with music therapy, the focus was mainly on addressing the physical symptoms, especially his muscle tensions and unfavorable sitting position. This focus was shaped by Lars own wishes and I tried to facilitate a music therapy program that could accommodate this. The Sound Beam was quickly introduced to him, first and foremost to motivate him into moving his upper body to mobilize a better sitting position. By placing the sensors quite far away from him and encourage him to stretch towards the sensors, it became quite clear that he found motivation due to the auditory feedback of the sensors when he moved. At one point he also realized that it was the choreatic movement in his fingers that actually made the music. He then expressed: “This reminds me of before; DJ”. After saying this, I looked at the video recordings of him and though this is my own interpretation, it seems that his movements become quite similar to the way a DJ spins his records. If so, he then was able to use an ability that had been looked inside of him for several years.
Lars used the Sound Beam during his whole stay at Olaviken and both he and his relatives expressed that this had a positive impact on Lars, both his mood and his physical state.
“Vidar” is a man in his mid-50 and is somewhere between the late mid stage/ early late stage of his disease. He needs 24 hours care, has barely any language left – except some repeating words and a lot of chorea in his arms and legs.
Vidar is a strong man and his movements cause a lot of anxiety in the staff, because it can potentially harm them when helping Vidar get dressed, eating and so forth. His chorea seems to increase when he is stressed, agitated or feels unsecure.
Vidar has had music therapy for the last two years. He has never been musically active in any way, but seems to respond to music through singing along, smiling and, when his verbal language was more intact, he often asked if he could join in on musical activities. His wife also told of memories of them going out dancing together.
Based on his respond in music therapy and his former dancing interest, Vidar was introduced to the Sound Beam. Two sensors was placed on each side of him and when his chorea started; there was music coming out, not fear nor anxiety, just pure musical sounds with a rhythmic beat, close to what he had experienced when dancing.
It think it took some time for Vidar to understand that it was his movement that made the music, and because of his lack of ability to express himself verbally, it is hard to say exactly what his thoughts and reactions actually where. Still, one thing is certain; he smiled, he made eye contact and after a while, his voluntary movements also seemed to kick in; he moved the body parts that the music therapist encouraged him to move at several occasions.
On the top of his music making, his repeating words were turned in to an improvisational vocal lyric causing a” call- and respond effect” between Vidar and the music therapist. His movements and his verbal sound all of the sudden made meaning; it had a cause.
The first time Tom tried out Sound Beam was not on what we would call a good day. He had a hard time finding rest and had a lot of chorea in his upper neck and head-area. He produced a lot of verbal sound and the staff found it hard to reach into him.
I have been together with Tom on similar days like this where I mainly play guitar or piano while singing his favorite songs and improvising his verbal sounds into the music. Before he often played along on instruments, but due to his functionally limitations it is very difficult for him to do so anymore.
I do experience that he respond to the music, mainly through making eye contact and becoming more quit in his physical and verbally appearance. Still, I am only able to hold his attention for a very short period of time, before his apprehensive behavior starts again.
When looking at the video recordings of the first session using Sound Beam, I see a man which is quit at unrest, he makes loud sounds moves his head back and forth, and he sweats a lot and is much unfocused in his eyes.
“How can I reach into him?” was the thought that ran through my mind.
I started out by touching his shoulder to make him physically aware of my presence and activating his senses. I then explained to him verbally about the Sound Beam and that it was his movements that would create the music that he heard. In an effort to accommodate his musical preferences I found a Sound Set on the Sound Beam in the blues/jazz genre-style. In addition I sang his name on top of the music with the lyrics: “Hi “Tom”, you are making music now. You are making music together with me”. When I started singing one can see on the recording that he moved his head towards me and looked me straight in the eyes. After finishing the lyrics he said: Yes” and I repeated his sound into the music.
I then tried to tell him once more that he was making music with his head and left arm (since that is where the his choreatic movements mainly were located). I then sat down and through his arm movements up and down, the Sound Beam createdthis tapping “beat” quite similar to a guitar solo where the strings are controlled. While doing this, he all of the sudden became totally quit, no sounds, no movements in the head, only the arm moving up and down, continuously making the “guitar solo”.
When trying to understand what this respond meant, I started thinking about his former career in the blues band, being the lead singer while playing the quitar. Did the respond of the Sound Beam while moving his hand facilitate any memories of playing a guitar solo, and if so, did this memory give him some kind of peace? This is off course hard to find a straight answer to, but still the fact is that this type of respond happened on several occasions and seemed has a positive effect for Tom.
The main purpose of the Sound Beam project was to evaluate the potential of Sound Beam to enhance meaningful interaction and communication together with residents living at the Neuropsychiatric department, Huntington at NKS Olaviken. The case stories tell about three persons that find it hard to interact with their surroundings in the way they did before. Still, Vidar, Lars and Tom had the need to feel understood, acknowledged and be part of a social relationship. I will state that this is basic human needs that do not go away because of a disease and need to be fostered through alternative ways of interacting.
Music as a medium has the potential of being an alternative channel for communication between human being, an in music therapy this potential is used to establish social interaction in situations where this is challenging. The Danish professor in Music Therapy, Lars Ole Bonde says:
«For clients without or partly without verbal speech, music can be a way in for contact and communication” (Bonde, 2014, own translation)
But why is it so? Researchers in the field of developmental psychology, such as Daniel Stern, Steven Malloch, Colwyn Trevarthen and Jaqueline Robarts speak of our “communicative musicality”, an ability that makes us capable of communicating with our caregivers from the day we are born (Malloch & Trevarthen, 2009). The mother- infant communication has common features with what we see in musical interactions, such as pulse, melodic intonation, similar pitch and tuning into one another.
“Infancy research substantiates the concept of a robust and responsive musicality of communion that is present at birth and continues to function throughout the lifespan, creating and shaping meaning in relationships” (Robarst, 2009, p.379)
Linked to the case stories presented here, one might say that I as a music therapist used these inborn capacity for musical, non-verbal forms of interaction, and that the Sound Beam helped give meaning to Vidar, Lars and Tom`s initiations. With Lars, his finger movements which mainly was due to chorea all of the sudden was “transformed” into meaningful and purposeful movements that reminded him of his abilities as a DJ. For Vidar, his powerful movements that caused fear were now transformed into being a way to create music in a powerful way. The more he moved, the more music he made. For Tom`s sake, the Sound Beam actually became a context where he found rest, meaning that his movements were still present particularly in his arm, but now they were creating soft blues music that he was so found of before. This seemed to have a soothing and comforting effect on him.
The case stories illustrate three different experiences of using Sound Beam. Common for all of them was that it gave me, Lars, Vidar and Tom a chance to interact together. Hopefully it also gave the three of them a sense of mastery, acknowledgement and happiness and highlighted their preserved capacities for communicating.
Brain-researcher and doctor, Kjeld Fredens state:
Music is more than a pleasurable cheesecake; it touches upon our ancient evolutionary brain circulatory, with the whole fundament of our mental development. (Fredens, 2017, p.11, own translation)
In my clinical work together with people with Huntington disease, I feel blessed to have music as my main “tool” for interactions. It helps both me and the person to understand each other and it gives an equal platform for communicating. The Sound Beam, I will state, gives us an unique opportunity to preserve each person`s ability to create, interact and act through the vital form of dancing.
“[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-
Bonde, L.O. (ed.) (2014) Musikterapi – Teori, utdannelse, praksis, forskning. En håndbog om musikterapi i Danmark. Århus, Forlaget Klim
Fredens, K. (2017: Preface.In: Lindvang, C. & Bolette, D.B. (ed.) Musik, krop og følelser. Neuroaffektive processer i musikterapi. Frydenlund Academic, Fredriksberg, p. 9-12
Malloch, S. and Trevarthen, C. (2009) Communicative Musicality: Exploring the Basis of Human Companionship. Oxford: Oxford University Press
Robarst, J. (2009) Supporting the development of mindfulness and meaning. In: Malloch, S. & Trevarthen, C. (ed.) Commicative Musicality. Exploring the basis of human companionship. Oxford, Oxford University Press, p.377-400.
Soundbeam.co: History.Downloaded from:https://www.soundbeam.co.uk/history/.
Ruud, E (1990) Musikk som kommunikasjon og samhandling. Oslo: Solum