Soundscape premiere brings together the young onset Parkinson’s community

‘I Hear You’, a soundscape of the unheard world of young onset Parkinson’s supported by Parkinson’s UK, was premiered at Bloomsbury Studio, London on Tuesday 11 June. 

'I Hear You' combines the spoken words of people living with young onset Parkinson’s describing their experiences of living with mental health symptoms, with original music by composer and participant Dr Simon Lesley and percussionist Simon Carrington. A soundscape is a composition of various sounds that portray the auditory environment of a specific experience which, in this instance, is young-onset Parkinson’s.

The project was the result of collaboration between artist Alison Carlier and Parkinson’s UK’s Mental Health Hub Lead and Senior Clinical Neuropsychologist, Dr Jennifer Foley. It was commissioned by the Institute of Neurology and Dementia Research Institute Trellis: Arbor knowledge-exchange programme at UCL.

At the screening, Shafaq Hussain-Ali, who lives with Parkinson’s, described her participation in the project as “cathartic”. Dr Ella Burchill attending the event described the experience as “textured, unexpected and insightful”. 

Why did this project happen? 

We know a large number of people living with Parkinson’s experience mental ill-health. The risk of this can be greater for people living with young onset Parkinson’s, interfering with their relationships and reducing social networks. Social support has been shown to improve both mental and physical health. This project sought to explore what it’s like to live with these symptoms and to provide a supportive community.

Gini Dellow, Policy Manager for Mental Health and Dementia at Parkinson’s UK, said: 

“The ‘I Hear You’ soundscape has been an innovative way of bringing people in the young onset Parkinson’s community together. Combining their words with music has powerfully and insightfully shown what it is like to live with these symptoms. The soundscape was very moving. Collaborating in this way helps us improve our understanding and seek out new ways to support people with their mental health. It is an important priority for Parkinson’s UK.”

What's next?

A music festival, ‘To Be Heard’, will be taking place at Swiss Church, Covent Garden, London on Friday 12 July 2024 from 7pm to 10pm.

This festival will bring together the young-onset Parkinson’s community for an evening of music, connection and inspiration. The in-person event will unite individuals impacted by young-onset Parkinson’s and showcase the talents of young musicians living with the condition.

The event will aim to convene and empower a community of people with young onset Parkinson’s, policy makers, clinicians, creatives and academics to co-design a better future for young people living with Parkinson’s.

Find out more

To attend or for more details, please visit the event registration website.

If you are a budding musician and would like to take to the stage as part of this festival, please get in touch with Dr Jennifer Foley.

Get involved

The participants for this project came from our Parkinson’s UK research volunteers. There are lots of ways to get involved with research. Find out more about how you can get involved.