I鈥檓 at a close friend鈥檚 wedding, waiting to give a speech. Public speaking always makes me anxious, but today it鈥檚 worse than usual: my hand is shaking noticeably and I can鈥檛 seem to make it stop. The loss of control is unnerving.
When I try to speak to a neighbour, my voice comes out in a whisper, even though it seems to take more effort. Soon, my upper arm feels tired. I tell myself I just need to relax and snap out of it. I pick up my spoon and fill it with soup, but this only makes the tremors more obvious, as the metal beats against the bowl.
For a moment, I have forgotten that I鈥檓 immersed in an interactive installation called , created by and his team from the Analogue theatre company.
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It aims to simulate the physical and psychological effects of the early stages of Parkinson鈥檚 disease by taking inspiration from body illusions, like the rubber hand trick, in which the brain accepts a fake limb as its own.
In another鈥檚 arm
To create the sensations, you wear a glove fitted with a motorised device, while looking at a screen you hold in the other hand (see video). The device recreates tremors running at 6 hertz, which is the upper limit of those experienced by people with Parkinson鈥檚 disease.
Video: Body illusion lets you experience Parkinson鈥檚
You follow instructions fed through headphones, and use your kitted-up arm to mimic the movements of a man on the screen, manipulating real cutlery as he does. This creates the illusion that the virtual limb is your own.
The 鈥渟tory鈥� unfolds through the eyes of Andrew, a man in his thirties with symptoms of Parkinson鈥檚. While the disease is more common in older people, younger adults are also susceptible.
鈥淚f someone is in their thirties, the symptoms may be interpreted in a different way in a public context,鈥� says Jarvis. In the installation, for example, a waiter thinks the character is drunk. 鈥淲e鈥檙e hoping to challenge these expectations,鈥� adds Jarvis.
Physically drained
Most people are familiar with Parkinson鈥檚 tremors, but there are other less obvious symptoms. After the 15-minute simulation, my upper arm feels tired, which I didn鈥檛 expect, and I feel physically drained.
And motor conditions can affect your voice, so it takes more effort for you to speak. Struggling to communicate can affect how you are seen, and psychological effects, such as anxiety, can lead to depression.
Andrew, who is soon to become a father, imagines being an embarrassment to his child and worries that his tremors will restrict his ability to play with him.
Analogue鈥檚 idea was inspired by the work of neuroscientists like Oliver Sacks, who are interested in the subjective experiences of patients. 鈥淎 disease is a lens allowing a person to experience the world slightly differently,鈥� says Jarvis. 鈥淎s an artist, I see potential for learning about a condition using our craft.鈥�
Increasing empathy
To accurately simulate Parkinson鈥檚 symptoms, Jarvis and his colleagues worked closely with neuroscientist at Royal Holloway, University of London, as well as with the charity, Parkinson鈥檚 UK. The script was based on real accounts from blogs and patients.
鈥淗ealthcare professionals could use it to feel what their patients are experiencing and how it impacts on everyday tasks,鈥� says Jarvis.
Jarvis鈥檚 main aim is to create empathy, rather than to entertain. The prototype has been shown to carers and nurses, at the , to psychology students as a learning tool, and at the Science Museum鈥檚 in London.
Goggle-eyed future
The Analogue team is exploring different ways of reaching a larger audience. 鈥淲e could potentially develop an app that allows people to run it themselves at home,鈥� says Jarvis.
The system was developed using low-cost technology, and its components are controlled by a credit-card-sized Raspberry Pi computer. The team is now focusing on making the motorised glove less bulky, and replacing the screen with virtual reality goggles, like the Oculus Rift to make it more immersive.
The team has also reconstructed the experience of someone with amnesia and wants to create similar experiences for other conditions, such as tinnitus or auditory hallucinations. The feedback they are getting indicates that simulating a first-hand experience is a powerful tool for understanding someone else.
As I leave the mock dinner table after trying for several minutes to handle a bowl of soup, my stomach starts to grumble and I realise that it is lunchtime. As I effortlessly shovel in my lunch, I am reminded of the extreme effort and frustration that people with Parkinson鈥檚 have to deal with to complete simple, everyday tasks.
