Review ‘Detours through the Parkinson brain’

WPC award for ‘distinguished research’

On 6 July 2023 during the 6th World Parkinson Congress, the late Marina Noordegraaf (8 March 1969 – 14 October 2022) posthumously received a WPC award for ‘distinguished research’. To stimulate cooperation between experts by experience and professionals in research. She was nominated by Sara Rigarre and Mariette Robijn. In addition, Marina received a special tribute for her special (self-help) book, ‘Detours through the Parkinson’s Brain’.

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WPC Award-recipients in 2023

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Ingrid Sturkenboom (Netherlands),

“I had the honorable mission to publicize the masterpiece of the late Marina Noordegraaf: her very special book ‘Detours of the Parkinson Brain’. A book full of tips from and for people with Parkinson’s disease to get around thinking obstacles in everyday life. And it worked!

Bas Bloem prompted everyone to download a free copy of the book during his speech on the award for outstanding research collaboration that Marina received posthumously for her wonderful work. There was/is the possibility to buy a hard copy of the book.The book was displayed in the book corner. I presented the underlying scientific research for the book in a poster and had the honor of representing Marina in a book panel discussion on the theme of empowerment.

I have found two women who intend to make a translation of the book in French and Spanish!Marina would have been so happy and proud!”

Ingrid Sturkenboom on the presentation of the Distinguished Researcher Award and tribute to the book ‘Detours of the Parkinson Brain’ by the late and great Marina Noordergraaf.

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The help book, written by and for people with Parkinson’s, provides insight into how the many different people with Parkinson’s come up with their own solutions to cope with this complex disease. A source of information for anyone dealing with chronic progressive Parkinson’s disease. Both the person himself, as well as his loved ones and caregivers and doctors can consult the particularly beautifully illustrated book by Marina herself.

For me it is not only a self-help book, but also pleasant to leaf through, clear Jip and Janneke language that Marina insisted on so often with the doctors and scientists. Even children can understand it. But the statement Hopamine also gives you a sincere feeling of, we are going to get people with Parkinson’s disease and scientists out of the world together.

Let’s go forward!

The book ‘Detours in the Parkinson Brain‘ is for sale at Uitgeverij Abbeseijn

(June 2023, 4th edition)
ISBN 978-90-831732

Hans van Geluk

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Marina Noordegraaf (Netherlands) (posthumous)

Marina was a patient researcher and experienced visual artist who lived with Parkinson’s disease in the Netherlands. Six days after her 49th birthday in March 2018, she was diagnosed with Parkinson’s. She came from the Netherlands, where she studied organic chemistry and lived with her family. She ran a business in communications. Her gift to the community and the world was her ability to improve and expand communication between people with Parkinson’s and researchers. Marina was convinced that open access was the best way to change the world, meaning we can continue to use her great work even though she is no longer with us. With the publication of her book ‘Detours through the Parkinson’s brain’ in March 2022, she fulfilled her dream to “create new connections, ‘human chemistry’ in Parkinson’s research, healthcare and the community to provide a glimpse of hope in accelerating discovery, increasing understanding and improving the quality of life of patients with neurodegenerative diseases.”

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Marina said: “I want to discover meaningful questions and increase knowledge and understanding by designing the sparks that help this learning process the most. There is no fun and no meaning in having Parkinson’s without the sparks.”

“As long as I have Parkinson’s and Parkinson’s doesn’t have me, I want to commit myself to making meaningful connections – ‘sparks’ – between scientists, healthcare providers and patients.”

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“There is no fun and no meaning in having Parkinson’s without the Sparks”

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On behalf of the World Parkinson’s Congress, I had the honor (and also the sad task) of presenting the Distinguished Researcher Award to the late and wonderful Marina Noordegraaf, who was such a wonderful, inspiring and wonderful ambassador for the fight against #Parkinson.

Speaking on behalf of Marina, instead of delivering an obituary, we have turned this moment into a call to action, urging everyone to pre-order a free copy of her open access book “Detours in the Parkinson Brain” which is an absolute MUST READ for anyone passionate about helping people with Parkinson’s disease or atypical Parkinsonism.

Bas Bloem during the presentation of the Distinguished Researcher Award to the late and great Marina Noordegraaf

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This review is a tribute to Marina and her mindset, being her people person, with the heart in the right place.. and kr8 for urging us to keep going. Our contact via the internet, but especially that one time during the first Dutch Parkinson Scientists conference, I found our contact very warm. Certainly one-on-one when we talked about how we as Parkinson’s researchers could and can think along and especially have to get the studies in the Jip and Janneke language indicated to me that we are on the same page. But your simple explanation with your special drawings also gave me, but also other fellow Parkinsonians and especially scientists, a clear picture of how you thought about certain subjects. The beautiful and well-illustrated book “Ommetjes door het Parkinson’s brain” which offers us explanation, guidance and support is a special example of this.

Thank you so much for what you have done and meant to me and the Parkinson’s community!

Hans

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FOR AND BY PEOPLE WITH PARKINSON AND THEIR RELATIVES

Detours of the Parkinson Brain

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Detours through the Parkinson’s brain was made possible by all people with Parkinson’s and their loved ones who donated their experiences and time to the COPIED study. The COPIED study is a scientific investigation into obstacles in thinking in Parkinson’s disease and the detours that people with Parkinson’s and their loved ones use to get around them. It is the collected obstacles and detours of the research participants that are central to this viewing, discussing and doing book.

The experiences of the research participants have been linked together by drs. Marina Noordegraaf †, dr. Ingrid Sturkenboom, Jolanda van Omme, MSW, dr. Esther Steultjens † and Edwin Barentsen, MBA. The project was made possible with a grant from the Parkinson Association and ParkinsonNL.

About ‘Detours through the Parkinson brain’

This is a self-help book for and by people with Parkinson’s and their loved ones. With this book we want to:

– enabling people to name the obstacles in thinking that most hinder them;
-facilitating discussions about a relatively invisible topic;
– inspire people to try the detours of their peers;
– inform and stimulate awareness.

This book is meant to be flipped through at your leisure, to leave open to a page that appeals to you, to discuss with the people you love, to take to your healthcare provider, to leave lying around, and then see what happens when others see it lying around. Above all, it is intended to make thinking obstacles in Parkinson’s so visible that their invisibility is no longer an obstacle in itself.

Author, designer and drawings: Marina Noordegraaf
Publisher Abyssijn (June 2023, 4th edition)
ISBN 978-90-831732
This work can be used under a CC-BY NC 4.0 license. That means you can use it however you want as long as it’s for non-commercial purposes and you credit the source.

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Marina wrote the following about the COPIED study at the time

The COPIED study started on October 1, 2020. The COPIED study is a scientific study of obstacles in thinking in Parkinson’s disease and the detours that people have found themselves to deal with them. The research received a subsidy from the Parkinson’s Association and will run until April 1, 2022. A lot has happened since the almost two months that the research has been running. Currently, the preparatory phase is almost completed and we have started recruiting for the focus group meetings.

We have set up a project website especially for this research: https://www.copiedstudie.nl. On this website we will keep you informed as openly as possible about research progress, entirely in accordance with the principles of open science. After all, what is actually involved in setting up and conducting social scientific research? And COPIED in particular?

I’m already learning and I’m curious what I’m going to encounter. For example, what will it be like to explore cognitive obstacles while also experiencing them myself?

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