Dopamine Disco: Battling Parkinson’s Disease in the Most Inspiring Ways
“I want to be the Heisenberg of dopamine,” says Simon Brown. Just like the lead character in Breaking Bad, he looks battle-worn and jaded. Also like the much-loved anti-hero, you’d be wise to remember his name. He peers up to his studio camera and his eyes flash for a second. His posture is slightly ajar and tense through four years of living with Parkinson’s but there’s very subtle smirk and an energy to what he’s saying. A hint of inspiration. Possibly even excitement… As much excitement as northern men who grew up in the 70s and 80s will let themselves show. Not least one who’s fought chronic depression, anxiety and, sadly, suicide attempts.
To the ‘Geek-Cave’, let’s go!
Looking behind Simon you can see an impressive action scene rolling out behind him: Synths, DJ equipment, instruments, books, screens, canvas, paint, photographs. That’s just what you can see in shot. The culmination of what Simon describes as “trying to understand how they make records for 30 years”, his studio is an enclave many of us will find familiar. This is his domain. It’s where he paints, where he experiments with his techno and drone productions, plays and mixes music, broadcasts his regular jams and vlogs on Twitch. It’s where he edits his photos (he specialises in street photography) and where he spends hours devouring information, reading anything from neuroscience papers to motivational theory books in a bid to understand his diagnosis and “hack” his brain out of the symptoms. His most recent development in his den is a dopamine detector.
“Imagine the Electrifying Mojo hanging out at King Tubby’s Berlin TV station, just after the wall come down,” continues Simon. His smirk goes full beam. Parkinson’s may have completely turned his life upside down – preventing the creation of the essential dopamine chemical in his brain that enables so many things people take for granted, from movement to mood levels – but he is fully aware of how ridiculous this ambitious notion sounds. Yet even through his Twitch channel façade, you can tell he’s gravely serious. His intent is reinforced by the fact he’s found scientific research to back up his current project and the fact he’d spent the previous 20 minutes demonstrating how he fastidiously runs signals through an oscillator to detect dopamine-inducing frequencies. His ambition isn’t misplaced and seems conceivable.
“The plan is to eventually isolate the frequencies and sounds and motifs. Once you’ve got that raw material you can put it into a melody or harmony. I want to give people the tools and give them the feeling back.” explains Simon. Prior to developing Parkinson’s disease, he lived an active, healthy lifestyle and was a keen mountain bike rider. He’s also a proud father and husband. Before his recent dopamine epiphanies, his family were his only light when his depression hit its absolute lowest and it felt like he’d never get the feeling back himself. Helping others in similar situations regain that feeling is just as much of a driving force as combating his own symptoms. He explains how his idea for the dopamine detector is based around an MVP model. A minimal viable product: bare bones, just using the free versions of VSTs and DAWs so everyone can access it and use it.
You’re observing your own life but not getting the emotions, only the negative ones
“It can reach people at home and start them dancing and enjoying it,” says Simon. “It will give them the means of their own to create. I love the idea of everyone creating these dopamine loops, people getting together online and sharing their creations. All of us contributing to this. We can do this. We can make thousands of people feel good from music. That’s why people go to clubs. I want to strip away all the shit and give people the raw feeling.”
By now Simon is engaged and seems more relaxed. He tells me that he’d spent the previous two days being rigorously interviewed by doctors and neuroscience specialists about his symptoms. He’s relieved to be talking about something he loves: music, art, science and helping people. His dopamine detector is one of many creative outlets he’s poured himself into during the four years since the onset of Parkinson’s. The average age of diagnosis is 60. Simon was only 43. He’s not alone, though; Parkinson’s disease is one of the fastest rising neurological illnesses. Between 1990 – 2015 the amount of people with Parkinson’s in the world doubled to over 6.2 million. It’s estimated that this could rise to 12 million by 2040.
“I just felt nothing,” says Simon who fell into heavy depression and anxiety as a result of his diagnosis. Parkinson’s effects everyone in different ways. And while the physical aspects of the condition – tremors, slowness of movement, stiffness – are well known aspects of the condition’s complex symptoms, it’s the emotional ones that many living with the condition find the hardest to articulate or combat. “I didn’t feel anything because of the lack of dopamine. You’re observing your own life but not getting the emotions, only the negative ones. That’s not easy. And on bad days, it’s not a pretty sight. It took a long time to get where I am today…”
The place where Simon is at now is remarkable considering it’s only been four years since his diagnosis. After that initial, acutely painful low, he began to face Parkinson’s head-on. “I was meditating, reading ‘how to find your purpose’ books, Buddhism, Zen Buddhism, all the bloody isms,” he lists dryly. “I just needed to work out what it was that made me really happy when I was younger.”
Art for art’s sake
He found it in art, something he was always interested in but felt he could never pursue. Growing up in the North East of England, during the 70s and 80s, art was not encouraged or even considered a career option at all. “I trained as a designer because that’s allowed isn’t it?” he raises his eyebrow. “You can only be creative as long as it’s for other people.”
Design has been his trade throughout his adult life. It took him to some interesting places during the 90s and 2000s; he scored album sleeve work and became art director of Big Daddy and Grand Slam hip-hop magazines. But these were low-paying passion projects because of his love for music and his deep roots in hip-hop culture. Day-to-day he was applying his creativity in a much dryer corporate environment. “I’d ended up doing e-commerce. Designing furniture for yuppies. It just didn’t feel right.”
The job had to go. It wasn’t going to stay anyway; his depression had rendered him on near-permanent sick leave. But when he made the decision to leave it triggered the dawn of a new mindset. “I started looking at everything from an artistic point of view rather than a creative business point of view,” he says. “It was very liberating. I suddenly remembered that you can do what you want!”
So he did. First came street photography. “I remember something a neurologist said to me was ‘when you’re into doing something do you notice your tremors aren’t quite so strong’,” he recalls. “And the more I thought about it, the more I realised I barely experienced them. I’d effectively forgotten about my condition while I was doing something I love.”
This gave Simon hope. He knew he was on the right track and developed confidence to explore more interests. Painting was a natural progression, tapping into his graffiti days as a youth, contributing to the thriving hip-hop revolution that was exploding across the UK and Europe in the early 80s thanks to films like Wildstyle. “The painting is something else,” he smiles. “With a camera you’re capturing something there but with painting you’re coming up with something from nothing.”
His work would be considered outsider art, something Simon is more than happy about; during our conversations it’s clear he has the most respect for the intricate disciplines and practices of subcultures. His art includes pieces he describes as ‘sound paintings’, where the paint is left on the canvas in front of a speaker and the frequencies create the art. He also creates collages where he references sample culture using elements from other resources. When friends came over to visit, he’d involve them in the process and found another hidden benefit.
“If someone was round I’d ask them to grab a brush and colour things in with me. As we were doing it they’d open up about their feelings,” he says. “We’re not very forthcoming as northern blokes are we? But suddenly they’d open up about a lot of things we’d never usually speak about. It was very much like therapy.”
It was at odds with other artistic therapies he’d seen and been invited to take part in at hospitals and care centres where everyone was expected to paint dainty water colours. He felt it was all a bit patronising and not really addressing any real issues. But this engagement made him realise that not only could art take his mind away from his condition, it could help, break barriers down and encourage people to discuss their problems and collaborate. “My time spent in underground subcultures throughout my teens, and ever since, helped,” says Simon who organised electro nights at youth clubs and day time underage events in clubs from the age of 13. “I knew whatever I did to try and help me and help others had to be real and not cheesy in any way.” Then a chance trip to a club night in southern France caused his biggest epiphany. It was so life changing it’s been responsible for everything else that’s followed and comprises all his passions.
Sucre Sharp Shooter
“I thought to myself ‘if I go to this event and don’t feel anything then I’ll leave the dance music thing alone for good.’” Simon says. “But I walked through the door, I felt the bass and I was close to tears. That feeling in your stomach, hairs on the back of the neck. Everything. I watched the DJ and thought ‘he’s dishing out some prime dopamine here!’”
The club was Le Sucre in Lyon, France. Simon can’t recall the dopamine-dishing DJ but it didn’t matter who it was, it was what he was doing. Simon’s years of tinkering with sound, playing and collecting records, studying the artform were all about to be galvanised in a way he had previously never thought possible. “I wanted to do what he was doing,” Simon explains. “It’s better to give than receive, right? So if I’m up there, giving out the dopamine making myself feel good and other people feel good then I’ll feel twice as good!”
Dopamine Disco was born right at this moment. On his return Simon started exploring why he felt so good that night and found a whole host of research that explained why. Over the last decade more and more tests have been conducted by neuroscience and medical groups exploring how exercise can slow down the effects of Parkinson’s. Two and a half hours of light exercise per week can help with postural control, balance, movement and, of course, help transmit dopamine inducing chemicals in your brain.
Essentially I just wanted that feeling of dancing with my eyes closed and feeling like I’m in the future again
“This is an emerging piece of research that’s happening within the Parkinson’s research community in general,” says Sion Baldwin-Jones, editor of The Parkinson magazine, a publication for leading UK charity Parkinson’s UK. “It’s relatively new. 10 or 20 years ago a doctor would advise you not to exercise because it could be too physical due to the physical symptoms of the condition. Now it’s seen much more as a benefit. We are starting to see more doctors prescribe exercise as well as medication much more now. And with Simon it’s twofold. The dancing is exercise in itself. But for him it also involves a creative expression. We’ve found creative outlets help people with Parkinson’s hugely. Whether it’s writing poetry or ballroom dancing or painting, creative activities seem to feature a lot in people with Parkinson’s lifestyles as a way of dealing with it.”
For Simon it was the ideal solution and a natural development on the lifestyle he led anyway – “I’d been sharpening my axe for this for 30 years!” – so within weeks of arriving back home, he’d formulated a plan: he was going back to something he hadn’t done since the late 90s and promote his own nights. He re-explored DJing, new technology and the best solutions for mixing both with the physical aspects of his Parkinson’s symptoms in mind, but mainly also his vast musical references. His research led him to Denon DJ’s PRIME 4 functionality – especially the performance pads – which were conducive to his physical symptoms.
“They’re buttons you can really press,” says Simon, moving over to the decks to give a demonstration. He explains how the Parkinson’s has changed his DJ style. Once inspired by turntablism, he’s developed more of a ‘selector’ approach, is developing his own slow signature scratches and uses the performance pads, both hot cues and effects, for transitions. Like his other creative pursuits, mixing has been another tonic that’s helped him combat his symptoms; when his PRIME 4 first arrived he mixed six hours straight. “My physio tells me I need to exercise my fingers for accuracy, power and dexterity so this is perfect. That’s on top of the feelings of joy I get when I’m lost in the mix and I don’t think about my condition any more.”
“Essentially I just wanted that feeling of dancing with my eyes closed and feeling like I’m in the future again. Whether that’s behind the decks or on the dancefloor.” he smiles. “So After Lyon I went on a quest to find the right venue. I’d forgotten how challenging that world was. I approached it like I was still 25 but eventually regretted it.”
The first Dopamine Disco event was held in August  in Sheffield’s Yellow Arch Studios. It was well supported and generated local interest and support and attracted enough people for him to continue. He followed it up in September with an event programmed as part of BBC’s Music Week but it didn’t have quite the same affect. “I got f**ked over by a wideboy promoter, basically,” he sighs, instantly looking tired again. “He’d seen the events were focused on wellness and wanted to benefit from that. After the first event I got completely side-lined.”
This came as a substantial blow. But, just like everything Simon’s been through in the last four years, he’s risen to the challenge and it’s helped him fine-tune the Dopamine Disco project to what it is today and the great potential it has for the future. “The rave / club paradigm doesn’t work for me,” explains Simon who admits to feeling too old in a typical club environment anyway, regardless of his Parkinson’s.
“We all have very busy lives. Asking someone to come out for an evening is quite a big ask. But asking people to go online for a while isn’t so much of a request. I love the gamifying idea of platforms like Twitch. I love the interactions. Hanging out, sharing ideas, talking about and sharing our appreciation for music. It’s fully accessible too. Unlike clubs, we can all be present with no barriers. You can even dance in your pants if you want!”
Pants to Parkinson’s
Simon is now in talks with Ableton’s Research & Development team regarding his dopamine detector. If it takes off, then perhaps you’ll be able to jam and collaborate with him in this way, in your pants too. However clothed you decided to be, science is on his side once again. The most recent neuroscience papers he’s been reading have explored the link between dopamine and receiving pleasure rewards from music that scientists have suspected but proven. The tests were conducted last year by Spanish neuroscientist Laura Ferreri in, as a neat coincidental aside, the university of Lyon. They can be read in full detail here but essentially they establish the causal role of dopamine in musical pleasure, indicating that dopaminergic transmission might play different or additive roles to the ones scientists believe they already do.
“I knew I was onto something,” says Simon who spends hours experimenting with sonic ways to reduce his symptoms. He’s fascinated by build-ups and found it’s not the drop that gives people the endorphin rush but anticipation of it (he jokingly calls it sonic edging) He’s also found that creating vocal mantras, looped live through tape echoes and FX, has had calming effects on his tremors and often refers to much of his research and development as ‘the sonic St John’s Ambulance’. “Finding these results has been really inspiring. These guys are a well-respected group of researchers and I want to offer myself as a test subject. We could rig it up through Twitch and get thousands of people involved. Imagine that, thousands of people with Parkinson’s all sharing the effect of the music and frequencies on their symptoms.”
Simon peers up at me again through his studio camera. Once again his eyes are flashing. He knows so much of this is in its infancy and some of it may never materialise beyond his own experiments and research, but the connections he’s making through his platforms and his actions – and the way he explains how much more positive he is about his own personal future after three years of intense and often painful soul searching – all confirm the road he’s on is the right one.
“Legacy is important for me,” he reflects, a little more soberly. “I don’t just want to be the DJ, dishing out the dopamine. I want this to include art, science and help people for the future. I want to sonically and visually synthesis dopamine. I want to do it naturally and legally. We could build dopamine machines for people sitting at home. Trust me, I know how life-changing that could be for someone.”
With that he smiles again, clearly invigorated by telling his story and sharing his plans. The inspiration isn’t just hinted any more. The excitement is no longer withheld. Dopamine Disco is the future for Simon Brown, giving him more purpose than anything else he’s found since his diagnosis. You’d be wise to remember his name.