平特五不中

The limits of the lab

When Naila Kuhlmann came to 平特五不中 in 2017 to complete her PhD on Parkinson鈥檚 Disease, she found she was uncomfortable with how detached her work in the lab was from the lives of people living with the disorder.

鈥淐oming out of [my] PhD, I felt a real disconnect between my work in the lab and the people my research was supposed to be helping,鈥� Kuhlmann said.

She also noticed how little patients鈥� knowledge and expertise were used in guiding research and clinical care and wanted to do something to change that, but communication between scientists and patients is not always easy.

鈥淲ith Parkinson鈥檚, there鈥檚 all of this inner knowledge鈥攖he first-hand experience people get from living with the condition every day鈥攖hat鈥檚 just impossible to communicate because we don鈥檛 share the same language in clinical research.鈥� Kuhlmann wanted to find a way to bridge the knowledge gap between Parkinson鈥檚 research and those living with the disease, for the betterment of both.

Filling in the gaps

Beyond her work as a neuroscientist, Kuhlmann鈥檚 passion lies in dance and circus arts鈥攁 background that allowed her to see the potential for performing arts to support this knowledge exchange鈥攁nd she founded the Piece of Mind Collective in 2018.

The Collective is an interdisciplinary team of researchers, artists and patients developing creative ways to unite research knowledge and the lived experience of illness through the performing arts. Members include dancers, circus artists, musicians, researchers and community members living with neurodegenerative diseases like Parkinson鈥檚 and dementia.

Through playful exploration, discussion and creative collaboration, each member鈥檚 experience and perspective are equally valued. The Collective has co-created performances that aim to convey the full experience of living with neurodegenerative disease, from the breakdown of neuronal function to the emotional toll chronic illness can take on an individual鈥檚 closest relationships.

New languages, new lessons

Building trust and communication between parties is crucial in participatory research, a key principle of the Piece of Mind Collective鈥檚 research and creation process. With everyone working outside their comfort zones, they鈥檙e able to develop common forms of expression from the ground up.

鈥淭he artistic process can help us realize what parts of knowledge are being lost inside of scientific research based on how we frame it and communicate it,鈥� Kuhlmann said.

Members approach composition from an interactive perspective, with stakeholders coming together to listen, discuss, improvise and refine the expression of concepts they wish to convey to the audience. In a touching on the creative process behind the Collective鈥檚 piece on Parkinson鈥檚 Disease, Kuhlmann shares that she feels the spirit of the entire project is best represented in the scene . It explores the sense of detachment that exists in doctor-patient relationships through the eyes of Collective member Anne鈥攁 Parkinson鈥檚 patient, herself.

The scene depicts a comedic interpretation of Anne receiving her diagnosis from two inattentive doctors who are seemingly less interested in her as a person than as a research subject. When Anne tries to express her reality living with the disease鈥檚 physical manifestations, the doctors turn away and intellectualize her experience between themselves. As they describe the current clinical understanding of the disorder to Anne, they begin moving around her in an undulating and unsettling way, reflecting the destabilization patients often feel when first learning about their condition.

After the doctors lead Anne away to further explain the cellular basis of Parkinson鈥檚, they throw off their lab coats and break into . This next scene illustrates some of the changes that occur in the brain cells of a person with Parkinson鈥檚. Every element of the music and corresponding dance represents one of the key players in the communication between neurons. A spoken-word voiceover introduces each sub-cellular component as it is revealed though movement and melody and explains the role it plays in neuronal transmission. These elements then change over time to represent how communication between neurons degrades as the disease progresses.

This unique combination of human experience, art and science communication allows the Collective to foster insightful conversations between researchers and community members while also relaying their shared knowledge to the public.

Finding a place at HBHL

When Kuhlmann founded the collective back in 2018, it was a small group of people meeting in parks and studios鈥攑laces ill-equipped for dance and acrobatic performances. As everything started coming together, Kuhlmann realized that she would need funding to continue this project while finishing up her PhD.

Stefanie Blain-Moraes, Kuhlmann鈥檚 supervisor and the principal investigator of the project, helped find a home for this original idea. 鈥淭he grant from HBHL gave us the opportunity to pursue this unique, intersectoral project that does not fit traditional funding models,鈥� explained Blain-Moraes. 鈥淭he outcome is a set of two incredible performances that are exemplary uses of the performing arts to convey scientific knowledge and lived experience of neurodegenerative conditions.鈥�

鈥淚n a very concrete way, the HBHL funding gave me a postdoc,鈥� Kuhlmann said. 鈥淚 don鈥檛 think I would have been able to do this project as a postdoctoral researcher if it wasn鈥檛 for HBHL鈥攊t鈥檚 the reason I am where I am today.鈥�

Kuhlmann shared that the Piece of Mind Collective plans to continue developing their performances and that she hopes to use them to create interactive workshops and facilitate further community-building among those with a connection to neurodegenerative disease. She is currently preparing the results of a qualitative study looking at the impact the Collective鈥檚 performances had on audiences and how the co-creation process resulted in knowledge exchange and built empathy between participants.

Visit the Piece of Mind Collective鈥檚 page to stay up to date, and watch past performances, interviews and behind-the-scenes content on their . The Collective was also featured on Radio-Canada鈥檚 popular-science series (video available in French only).