An interview with May Evers on Advocacy: Always keep on the move on March 17, 2024 by George Ackerman, Ph.D, J.D.
Biography
I grew up in Asia and the US and ended up in Hamburg, Germany where I studied Indonesian languages and social anthropology. I raised two kids and started working for Plan International, an international NGO in the field of advocacy for education in development aid and girls’ rights. Now, with PD on my back, I moved to internal communications, which involves less travel and front-line work.
Regarding my activities around PD, I am trustee to the Hilde-Ulrichs Foundation and am involved in various support groups and sportive activities.
Can you tell me more about your organization?
I’m not quite sure which organization you mean. Work related or PD related. I am guessing you mean the PD side of my activities and the Hilde-Ulrichs Foundation.
The Hilde-Ulrichs Foundation aims to enable people with Parkinson’s to improve their quality of life through non-drug therapies. We are committed to empowering patients and providing alternatives to conventional medical therapies. You can find an online glossary of non-medical therapies on our website. We also fund scientific research and help establish non-medicinal treatment methods. That would range from supporting a study on the impact of kickboxing on people with PD or a workshop-series for women with PD.
On the support group side, with the onset of Covid I started a daily online dance group that is still running. We meet every morning at eight and dance together for half an hour and talk about our issues afterwards. It’s a great way to start the day.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I have various passions, but the main two passions are being creative with needle and thread and bringing awareness on PD to the public.
My involvement with PD advocacy started soon after my diagnosis. I had started a blog on PD because there was not much information on the actual experience of people with PD in German. Then I started “Team Dopamin” together with Christoph De Martin and Tony Seidl. We encouraged people with Parkinson’s to write down their story. We published three books. Then Andy Butler from the UK came to see what was going on in Germany and that’s what sparked my global involvement.
What type of goals do individuals with Parkinson’s have when working with you?
They want to improve their quality of life and stay agile as long as possible.
What type of training and how long are the programs?
Any kind of sports helps. Fun is key, it keeps you going and helps you manage difficult times and situations.
What events do you participate in?
Anything that comes my way, as long as Parkinson’s allows me to.
Eg: I was invited to speak at a conference of the German ministry of education and research: on people with Parkinson’s views on Human embryos in medical research / Human embryos in medical research – Questions and answers (gesundheitsforschung-bmbf.de)
How does this also assist the caregivers?
Same reason as for people with PD- It strengthens their resilience.
How can someone get in touch? What is your website?
Die aktive Parkinsonstiftung | Hilde-Ulrichs-Stiftung (aktive-parkinsonstiftung.de)
Home | Tanz den Batman (jimdosite.com)
Der Erste Fisch – Stricksocken und Textilkunst
How can others also become advocates for awareness?
Just be out there. Speak with people, build networks and join one or the other organization that supports your cause and add value to it.
In your opinion what is the key to effective advocacy?
Be authentic find allies, and if you have a story to tell, then tell it.
How can we better fundraise to support a cure for Parkinson’s?
I think we have to be more honest about how PD really is affecting our lives. What the public currently sees, is mostly the bright side of PD, so the urgency cannot be felt.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I hike and do Yoga and Qigong. I try to eat healthy Mediterranean food. I’m not very good at it yet. I love chocolate and ice cream too much. But I’m trying.
Why should people who don’t have Parkinson’s care about this?
Because PD prevalence is growing at high speed. With more and more people, and especially young people with Parkinson’s on this planet, people should at least understand the basic symptoms and not stigmatize people with Parkinson’s.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, my mother and my aunt had PD, and I guess my grandmother had it too. She was never diagnosed, but the symptoms were there.
If you had one song that would tell us more about you or represent your life which song would it be?
Sweet Dreams by Eurythmics
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Stay active, curious and positive.