Discos, dopamine and Parkinson’s: Simon’s story

Simon is an artist and musician and and lives in Sheffield. He has recently rediscovered his love of music and dancing and is hoping to go global with his therapeutic, dance-inspired event for people with Parkinson’s called ‘Dopamine Disco’.

Music has always been a big part of my life. I grew up in Northumberland, and remember going to a breakdancing event when I was a teenager in Newcastle and thinking ‘what is this?!’ The music was from New York and it felt so exciting. I would spend all of my hard-earned cash travelling across the UK to see DJs, sneaking out to club nights and buying Afrika Bambaataa albums and spare batteries for my personal walkman. 

As an adult I studied music technology before getting into design and digital work. I’d often work with clubs and even designed a record sleeve. 

“You don’t live alone, do you?”

In 2012 I had a cycling accident where I injured my hand on the front wheel of my bike. The movement in my hand never returned to normal, and I also developed a tremor. But my GP  told me it was just a ‘benign’ tremor and sent me away. Eventually it got so bad that he referred me to a neurologist. 

In the waiting room there were lots of people who looked quite unwell, which terrified me. I knew that something was wrong when I was in the consulting room with two student doctors, and one whispered to me in a concerned tone, “you have got someone - you don’t live alone, do you?”. I was told I had Parkinson’s and left the hospital in a state of denial and grief.

Parkinson’s really affected my mood and I became depressed. I’d often feel numb. For me it was as much psychological as it was physical.

Adapting to life after diagnosis

Accepting I have Parkinson’s took me a long time. I was 43 when I was diagnosed, and felt like I had it all mapped out. I was in a long term relationship, I had a young child and had a decent job. But, I knew I had to adapt, and the version of my life that existed in my head had to change, which was really difficult. 

Parkinson’s really affected my mood and I became depressed. I’d often feel numb. For me it was as much psychological as it was physical. 

I ended up reassessing everything in my life, and started doing a lot of meditation and taking a deeper look at what was important to me. I left my fairly senior role at work and found that I had more time to go back to my creative roots. Being creative was therapeutic for me. Best of all it also meant that I no longer had to deal with corporate side of my job, which I really disliked.

The science behind disco

After time I felt like I had to make a plan. I knew from physiotherapy sessions that moving was helpful for Parkinson’s symptoms, and I’d read about the science behind how dancing and physical activity increases the levels of dopamine in your brain - the exact thing that Parkinson’s affects. 

Things really changed when I was in Lyon in France with my other half, and we went to an electronic music festival together. I hadn’t been to a big dance event like that for a long time, and I wasn’t sure what to expect, or if I’d enjoy it all these years later.

It was an incredible experience. Listening and dancing to the music gave me a huge rush, and I felt really emotional and tearful - in a good way. My fiancée said she’d never seen me so happy. It got me thinking back to those first breakdancing events I visited when I was a teenager and the happiness it brought me. 

Pitching ideas

When I returned, I started talking to friends about setting up a space where I could try and recreate the same environment but with the aim of helping people with Parkinson’s. I thought that if it has helped me, it could benefit others.

I started pitching the idea to venues, but no one was interested. I wanted a large club venue that would let me use their space during the day, but most places said it wasn’t commercially viable. 

Eventually, I sent a video to Yellow Arch Studios, an event space in Sheffield. I was invited to speak to their creative director, who completely understood my vision, and Dopamine Disco was born. They coached me through the process of setting up an event and were so supportive from the get-go.

On the day

It was really hard work to get the event off the ground but I ended up getting loads of old friends helping me which was amazing. We managed to get some local press and get the word out through social media.

I DJed for an hour and a half, and seeing people enjoying themselves and dancing was amazing for me.

On the day we booked a few acts including two experimental music acts who played house music, and invited a yoga instructor to come and get everyone warmed up at the start. We made sure the event was accessible and over the course of the day we had around 200 people come, and half of those were people affected by Parkinson’s. It was a real mix of ages and backgrounds. I DJed for an hour and a half, and seeing people enjoying themselves and dancing was amazing for me.

I’m not sure everyone was into the music, but, as my 8-year old son pointed out, he enjoyed it more than his own birthday - so we must have been doing something right!

We’re already planning the next one and with the continued support of Yellow Arches we’ve even managed to get the BBC involved. 

With Dopamine Disco I want people to feel better than when they come in and experience a sense of hope, inspiration and feeling connected. I’d love to inspire or work with others to set up Dopamine Disco events across the country, or even the world. I’m also thinking about broadcasting the events online so you can even join in in your pants at home if you want. 

If you listen to the lyrics of soul and disco music, it’s all about hope, endurance, and keeping on. That’s my message for others with Parkinson’s - try and see an opportunity. Never give up. 

You can find out more about Dopamine Disco and any upcoming events at https://dopaminedisco.com