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Team Dopamin project co-founder May Evers talks about the project’s success, plans to #UniteForParkinsons and the therapeutic benefits of creative writing and dance.

The Other Me Soi Antifas and May Evers (Copywrite Maria Gibert)

May Evers co-founded the Team Dopamin website for people with Parkinson’s (PwPs) as an online space to share real-life stories. The project has collected more than 180 stories since it launched last year, some of which have been recently published in print.

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We wanted to challenge the public perception of Parkinson’s, demonstrate the whole scope of symptoms and send out the message that, ‘Hey, we have Parkinson’s, but we are active and can contribute to society.

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May, 54, lives with her 15-year-old son in Hamburg, Germany. She works part time as a publications and internal communications specialist and was diagnosed with Parkinson’s in 2014.

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We received so many authentic and honest stories that we decided to publish them in an actual book (Book Dopamin) in order to reach out to the wider public.

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 What is Team Dopamin and how did it come about?

“I came up with the idea for the project with Christoph De Martin, after seeing the Unite for Parkinson’s campaign in 2017. Christoph is a fellow PwP and a former school teacher, who now produces videos on physical exercises for PwPs. He and I had separately decided to support the campaign via social media and our paths crossed quite quickly online. We were in awe of the wonderful activities happening around World Parkinson’s Day, especially in Austria and the UK, so we decided to come up with something that might also work in Germany.

“Together, we set up an online platform where PwPs and their carers could publish their own stories of how they deal with the condition every day. We wanted to challenge the public perception of Parkinson’s, demonstrate the whole scope of symptoms and send out the message that, ‘Hey, we have Parkinson’s, but we are active and can contribute to society as much as anybody else.’ We also wanted to give people with Parkinson’s a space where they can inform themselves about how their peers manage living with the condition. Many of our authors find writing therapeutic.”

Has it been a success?

“Since we launched the website in May 2017, it has gathered around 180 stories by more than 50 authors and received more than 50,000 visits. Christoph and I manage the site, but work with authors Tony Seidl and Claudia Röder who help us edit the stories and develop ideas.

“We also have a closed Facebook group where the authors meet and exchange ideas, decide on monthly themes to write about or hold ‘creative writing battles’ and so on.”

Why did you decide to publish a print version of these online stories?

“We received so many authentic and honest stories that we decided to publish them in an actual book (Book Dopamin) in order to reach out to the wider public. It was published in January 2018 and we have sold around 200 copies so far. We are working on book two at the moment.

“Currently the book itself is available in German only as we can’t afford to create a professional translation (a small portion of the profit is spent on our website, and the rest is donated to Parkinson’s-related projects). So, if anyone out there is willing to help out with translations, we would love to hear from them. The website has links to google translate, so you can read the online book in any language available.”

You are also taking part in a Parkinson’s theatre group Freeze 'n' Flow, which recently performed a play called "The Other Me" in Hamburg. How did you come to be involved?

“Around three years ago I had read about Dancing with Parkinson’s projects in the US and I started searching for something similar in Germany. Luckily Lena Klein of projekt:tanz eV had just started offering dance classes to PwPs in Hamburg, and I joined one of her groups. Last year, Lena founded the dance company Freeze’n’Flow. It is currently made up of seven people with Parkinson’s and we have been working on our first play “The Other Me”, together with eight professional guest dancers.

“The play is based on the diary of one of the Freeze’n’Flow members. It relates the typical history of a Parkinson’s patient, from initially noticing that something is wrong, to the diagnosis, and the challenges of dealing with the disease. It gives an insight into how we handle the illness emotionally.

“We performed the play at a fringe theatre in Hamburg in March, and have been invited to showcase parts of the play at the Tamed Conference For Dance Medicine in Frankfurt this summer.” 

What are the challenges of performing on stage as a person with Parkinson’s?

“Having to keep energy levels high and stay focused over a longer period of time is very challenging for PwPs. We easily get distracted when the stage is crowded. One of us may get lost at any point, but there is always someone around who helps us to quickly find our way back again. Also, when nerves kick in, it’s not easy to keep one’s balance while dancing, or to speak loud enough for the audience to hear and understand.

“However, dance is the best medicine for me. It soothes the tremors, makes me happy and lets me feel the positive energy flow through my body again. What I value most is that through all these activities I have met the most loveable and extraordinary people of my life.”

How did you hear the World Parkinson’s Day #UniteForParkinsons campaign and why did you decide to make a video?

“I like the idea of unifying people across the globe and raising awareness for Parkinson’s through simple, but authentic messages. When Tony Seidl started encouraging people to submit their videos, I jumped on board.”

“In support of the campaign and World Parkinson’s Day, we launched Book Dopamin 2 as an ebook and a paperback and used the hashtag #uniteforparkinsons. Also, on 11 April we met with friends and read from the book, which was live streamed on our Facebook  page.”

Further reading

How did you participate in World Parkinson’s Day? Have you found writing or other means of being creative helpful in dealing with your experience of Parkinson’s? Email info@epda.eu.com and tell us your stories

The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.

 

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