Piece of Mind: Presenting the Lived Experience and Scientific Research of Parkinson’s Disease through an Artistic Lens

The disparity between how scientists communicate with one another and what resonates with a broader public locks many research findings into an academic silo. Detailed scientific reports are the currency of academia, but knowledge dissemination to nonacademic audiences may require a more captivating, intuitive approach [1,2]. To this end, arts-based knowledge translation (KT) has gained increasing attention as a more effective way to communicate research to the lay public, providing an aesthetic lens through which audiences can emotionally engage with the information and draw connections to their own experiences [3–5]. In particular, dance and other performing arts invite a range of topics, from biological processes to social and cultural phenomena, to be brought to life and share the stage, marrying explanation with expression [6]. An arts-based approach also provides an opportunity to integrate the perspectives of diverse stakeholders who have previously been excluded from scientific research and to challenge predominant views of knowledge production and dissemination [7,8].

Piece of Mind was a participatory, arts-based KT project in which we brought together neuroscientists, artists, and persons with PD (PwPs) to co-create a performance based on scientific research and lived experience. Our goals were (1) to use the arts to facilitate knowledge exchange between participants; (2) to foster empathy through creative collaboration; and (3) to engage a lay public emotionally and intellectually to raise awareness and understanding of PD.

We used purposive sampling to recruit neuroscientists researching PD (n = 7), circus performers (n = 4), dancers (n = 3), musicians (n = 4), PwPs (n = 5), and a caregiver (n = 1). The collaborative process occurred over nine months (October 2020–June 2021) through several iterations of research and creation to identify the key messages participants wished to convey to audiences and how performing arts could be used to do so. Participatory research methodology was informed by the Canadian Institutes of Health Research’s guides for KT [9] and knowledge user collaboration [10] to balance an emergent process with our end goals.

At the project onset, we paired researchers and artists together to participate in a virtual art-science workshop, in which they explored how they might illustrate PD research findings and disease experiences through artistic media. Participants gained first-hand experience with art-science collaboration, and the resulting short videos were used to communicate scientific topics to PwPs. Approximately ten Zoom sessions (~2 per month, 1.5 hours each) followed, in which we used a creative and embodied approach to facilitate relationship-building, create common ground between participants, and explore concepts from the art-science videos. These sessions were initially grounded in group dance and movement exercises (e.g. a gestural telephone game) with a focus on using play and improvisation to engage with specific research topics (e.g. change in neurotransmitters) or lived experiences (e.g. the feeling of chaos).

Our approach expanded as participants brought new propositions to the group, including participatory music, poetry, and a round-robin activity in which relevant issues were explored from the perspective of lived experience, scientific knowledge, and artistic representation. Each session included a bilingual (English and French) discussion regarding what it’s like to live with PD, focused on drawing connections to scientific research and identifying relevant issues to highlight in the performance. These included invisible aspects and misperceptions of PD, how to move past motor limitations, PD’s effects on the rhythm of life, and communication barriers in healthcare. The emergent themes were verified with participants and developed through improvisation, focused discussions, and smaller breakout collaborations to create the artistic performance. Research ethics approval was obtained from the McGill University Institutional Review Board (A12-B74-20B).

The knowledge and creative content resulting from the virtual group sessions was synthesized over a one-month artistic residency in a Montréal-based studio. This consisted primarily of the performers (Claire Honda, Laurie Archambault, Greg Selinger, Heidi Blais, Anne-fay Audet Johnston, Marie-Eve Dicaire, Anne McIsaac), artistic director (Jérémie Robert), assistant director (Birdie Gregor), producer (Naila Kuhlmann), musician (Anusha Kamesh), lighting designer (Ted Stafford), and cinematographer (Naomi Silver-Vezina). Other participants who were unable to join in person (n = 10), including PwPs, a caregiver, researchers, and musicians, were kept informed by weekly email progress updates and rehearsal videos and were invited to provide feedback along the way. Occasional one-on-one or group Zoom meetings were organized for direct consultation to ensure that the performance material remained true to the lived experiences on which it was based, and accurately integrated scientific information.

The resulting performance integrated multiple perspectives and expertise that were conveyed through theater, dance, circus, music, sound design, and spoken word. The performance included three dancers trained respectively in tap (Honda), locking (Archambault) and breakdance (Selinger); three circus acrobats (Blais, Audet Johnston, Dicaire); a PwP (McIsaac); and a neuroscientist/musician (Kamesh). Audio clips from the Zoom sessions were incorporated throughout to share participants’ experiences in their own words. The performance was filmed and edited, resulting in a 45-minute video that used multiple angles and effects to immerse the viewer. The performance includes both French and English content, with subtitles available in both languages. We prepared supplementary materials to accompany the film, including written scene descriptions, participant interviews, and making-of footage. All videos, including the performance, interviews, and original art-science videos, are available for free on YouTube (https://youtu.be/-PiWs_LDOqk).

The final performance of Piece of Mind: Parkinson’s consisted of the following scenes, summarized in Table 1, illustrating how the social and emotional aspects of PD can share the stage with active areas of scientific inquiry.

Anne McIsaac engages in her morning routine while listening to the radio, where another PwP is comparing his experience with PD to walking on a tightrope. The performers enter one by one, each representing a different symptom of PD. Overhead, participants’ voices recount the first moment they noticed a change in their body. On stage, the performers embody abstractions of sleep disturbance, depression, tremors, rigidity, and altered rhythmic perception. These performers begin to surround McIsaac; this encroachment is easily ignored at first but becomes increasingly intrusive and eventually overtakes her. The music—a simple melody that was repeatedly fed through several arpeggiators—adds to the sense of increasing chaos (Fig. 1).

As McIsaac confronts her changing reality, aerial acrobat Blais is suspended from her hair to convey the feeling of helplessness upon receiving a diagnosis. A temporary loss of control is juxtaposed against graceful choreography shared between the two, conveying a sense of tranquility and relief in having finally received some clarity. This is accentuated by a dark, ambient cello piece layered with a serene, live violin accompaniment.

McIsaac is at an appointment with Dr. Archambault and resident Dr. Selinger, who use a wide array of diagnostic techniques and scientific language to describe the external manifestation of PD, while she attempts to express the internal landscape of her illness. This skit is an absurd, comedic take on the often-incommensurate worlds of medical knowledge and lived experience and the resultant communication barriers. The doctors list the cardinal symptoms of PD, recite lines from English surgeon James Parkinson’s (1755–1824) famous essay [11], and demonstrate what rigidity feels like in a patient’s arm, while seemingly dismissing McIsaac’s perspective (Fig. 2). Eventually, McIsaac and the doctors converge on the difficulty of diagnosing PD based on clinical symptoms, and the need to identify reliable symptoms and biomarkers for earlier, more accurate diagnoses.

In this urban dance battle, Archambault and Selinger provide a visual representation of the complex neural mechanisms underlying PD. The focus is on neurotransmission, with each element in the dance and music corresponding to a key synaptic player: mitochondria; the proteins LRRK2, VPS35, and alpha-synuclein; and the neurotransmitters dopamine, glutamate, and y-Aminobutyric acid (GABA). The sounds and the dancers’ movements were chosen to represent certain molecular properties or functional roles of the proteins and neurotransmitters in question. For example, Selinger and Archambault highlight the inhibitory, excitatory, or modulatory function of GABA, glutamate, and dopamine, respectively, through their interactions in the dance battle. As the scene progresses, each element is altered both in movement and sound to illustrate how it is disrupted in PD. Piece of Mind researchers Kuhlmann and Kamesh deliver a bilingual narration to provide further information on each represented player, how they are affected by PD, and how they might be targeted for treatment.

As McIsaac listens to the radio, we hear snippets of participants describing how their movement is affected by PD. Acrobats Dicaire, Audet Johnston, and Selinger sit beside her, and, one by one, begin to act as her “exoskeleton”: McIsaac initiates a “concentrated” form of movement, which is amplified and transformed by the acrobats. Their graceful handstands and brisk movements illustrate how motor abilities can fluctuate drastically throughout the day—from rigidity and freezing in one moment to fluid motion in the next. The acrobats also incorporate strategies shared by the participants to counteract motor difficulties and draw from their own experiences as movement artists. This scene strives to portray the motor complications of PD without parodying them.

This group dance focuses on the importance of community support (Color Plate A). While we emphasize the positive aspects of caregiving, the discussion at the heart of this piece revolves around difficulties navigating the lines between “romantic partner” and “caregiver,” the paradoxes of accepting vulnerability while protecting one’s independence, tensions in when and how to offer help, societal misconceptions of PD, and the need for better care services. The performers’ interactions are accompanied by gentle, upbeat music overlaid with audio clips from a Zoom session discussion regarding the role of caregivers. To highlight the complexity and diversity of perspectives surrounding these issues, the audio clips intentionally match or contradict what is portrayed on stage. The contradictions were included to acknowledge that while we focus on compassion and care in our piece, our participants also noted tensions in how help can be offered (sometimes in a self-serving manner) or received.

McIsaac takes us through her daily struggles with PD, finding humor in otherwise frustrating scenarios (Fig. 3). Addressing the audience directly, she invites viewers to “get uncomfortable,” providing instructions on how to do so. She puts the performers in various scenarios to demonstrate difficulties with motor coordination, tremor, dyskinesia, facial masking, action selection, and the feeling of chaos. Each scenario is accompanied by a recorded sound from a lab—including centrifuge and vortexer sounds—to create a surreal soundscape for the skit. The scene culminates in a failed attempt to bake muffins, resulting in a huge mess and heightened tension. The performers flee the room and run down a corridor, accompanied by tense music and panicked breathing.

The final scene portrays “Sur le fil” (On the Wire), a poem written by Lili Saint Laurent, another Piece of Mind participant living with PD [12]. She also uses a tightrope metaphor: her constant sense of fragility coupled with the strength she has developed in the face of adversity and chaos, pushing her step-by-step to a form of resilience. As the panic resolves into a bright light and calmed breathing, we see Blais traversing a slackline outside. While she is thrown off balance by the other performers wreaking havoc in the background, McIsaac guides her and wards off the chaos. The performers eventually come to sit on the slackline—perpetually present, but momentarily subdued. In the final moments, Blais lifts McIsaac onto the slackline and she walks towards the performers, who individually peel off as she approaches.

By weaving many “pieces of mind” into a narrative, we translated lived experience and scientific knowledge in a manner designed to evoke empathy and pique curiosity. Drawing on the unique attributes of artistic media enabled us to paint a more holistic picture of PD, providing a captivating complement to traditional modes of knowledge dissemination. While arts-based science communication invites an openness to interpretation that necessitates a departure from conveying literal information, it allows performers and viewers alike to place science into a personal and meaningful context [13]. From an artistic and scientific standpoint, future research on Piece of Mind could more closely investigate how to create choreography informed by the embodied experiences of PwPs, and that incorporates gestures that scientists use when explaining molecular mechanisms [14]. From a knowledge translation standpoint, we are building on this work in an evidence-based manner, integrating participant and audience feedback to guide the use of our materials in facilitating effective intersectoral exchanges of experiential, research-based and clinical expertise in PD. We hope that our innovative approach to engaging diverse stakeholders and communicating with nonacademic audiences will inspire future arts-based initiatives to better connect PD researchers with the broader community.

The authors acknowledge the significant contributions of the Piece of Mind participants. The Piece of Mind: Parkinson’s performance would not have been possible without the enthusiasm and talent of all those involved. We particularly thank Anusha Kamesh for reviewing our manuscript. The research received financial support from Healthy Brains Healthy Lives, Canada First Research Excellence Fund, Canadian Institutes of Health Research, Parkinson Québec, and Mitacs. The creation and production of the performance was funded by Conseils des arts et lettres de Québec, Conseils des arts de Montréal, and Etude partenariale sur la médiation de la musique.