Wendy's Parkinson Journey
In just 2.5 years, approximately 25 people have shared their personal stories through Wendy’s Parkinson Journey. Each story has been powerful, inspiring, and moving: stories of people living with Parkinson’s. But that’s not all! I’ve also created specials focused on women, highlighted organizations that advocate for people with Parkinson’s, interviewed researchers, and documented various events.
It is (and remains!) an incredible honor to give these stories a platform.
This World Parkinson's Day edition is a warm, beautiful publication full of inspiration, stories and hope. It is perfect to share with friends, family or acquaintances as a World Parkinson's Day gift. The magazine is completely free to read online. How great would it be if we all helped to spread this magazine and give even more people a smile or a moment of recognition?
COLOPHON Questions, compliments, complaints or spotted a mistake? For tips, interview request, article submission or advertisement placement. Email to info@jowija.nl
Wendy's Parkinson Journey ENJOY LIFE. is part of: Jowija Marketing & Events.
Disclaimer: 'Wedy's Parkinson Journey Enjoy Life' has been compiled with the utmost care. However, Jowija Marketing & Events is not liable for any direct or indirect damage that may arise from the use of the information provided herein. No rights can be derived from the content of this Enjoy Life magazine and no claims can be made.
Rene van Helsdingen, jazz pianist with Parkinson’s, lets the music speak
Jazz pianist Rene van Helsdingen, who lives with Parkinson’s himself, accompanies a number of dancers with the same condition on the piano. As his enchanting jazz melodies fill the room, you see how the dancers gradually loosen up and find freedom through movement.
The footage was filmed in the familiar surroundings of the dancers as well as at Rene’s home, which adds a deeply personal touch to the story.
Without uttering a single word, music and dance together tell a powerful and moving story.
Airing on April 11 on NHNieuws TV, from 6:10 PM, or available later in reruns during “Het goede uur”.
FOREWORD
Connection, Inspiring Each Other and Power
Another new magazine where people with Parkinson's are given space to tell their story. Stories that touch, inform and give positivity. In addition, I organize the Woman & Parkinson event, a day especially for women with Parkinson's. A day with a smile ;-)
I believe in the power of collaboration. In complementing, strengthening and helping each other. Every initiative, big or small, contributes to a Parkinson's world in which no one stands alone.
My commitment comes straight from the heart. Not because I have to, but because I feel it is necessary. And because I believe that together we can achieve so much.
So I will continue. With connecting. With creating. With being there for each other. With love, courage and a good dose of perseverance. Together we make the difference.
And let your voice be heard on World Parkinson's Day. Together we can make our voices sound even louder.
And enjoy reading this magazine with interviews from New Zealand, Canada, Florida and my country the Netherlands. Let me know what you think. You can easily write a review on my website. Click here!
Am I so different?
What if you show your illness in a different way? What if you show how, despite everything, you stay positive and get the best out of life? When you not only share your own struggle, but also show how you help and inspire others? Then people are touched by your resilience, your perseverance and your optimism. Fellow sufferers feel supported and less alone. And people without the disease also get a different perspective: they see not only the pain, but also the strength and courage.
Maybe it's time to focus more on positivity. Research shows that an optimistic outlook on life really does have an impact on our well-being. And that's exactly why healthcare should focus more on this. In addition to medical treatments, there should be more attention for mental resilience and strengthening a positive mindset.
Positive psychology is increasingly being used in healthcare, but there is still much to be gained. Programs that focus on strengthening mental resilience can ensure that people deal with their illness differently. By learning to look at what is possible instead of what has been lost, patients gain more control over their own lives.
What makes one person with Parkinson's do well for so long? What can we learn from this? What stories are there that help people maintain a better quality of life. Instead of only focusing on complaints and limitations, we should look at what someone can still do and how they can meaningfully fill their lives despite setbacks. This could not only help people with this diagnosis, but could also positively change the way society views illness and health.
Why not focus more on positivity? Why not all of us contribute to a movement that spreads hope, strength and inspiration? The way we talk about and deal with illness and health makes a huge difference. It is time to not only focus on what limits us, but especially on what still gives us strength. If healthcare and society make this shift together, we can create a world where illness is not only synonymous with suffering, but also with resilience and possibilities. 6
INTERVIEW Barbara Salsberg Mathews . .
.
'WhatParkinson’sFeelsLike ' AnIllustratedJourneyInspiredby People
withParkinson’s
FeaturinganInterviewwithArtist BarbaraSalsbergMathews
'DiagnosedwithParkinson’s in 2020, artistBarbara Salsberg Mathews has embarkedon a unique creative journey. Drawing inspiration from thepersonal experiences ofindividuals living withParkinson’s around theglobe, she has transformedtheir descriptions into a beautifully illustratedbook. Explore how artgives voice to the diverse realities of Parkinson’s in this compelling work.
Barbara Salsberg Mathews is a multifaceted artist, educator, and advocate whose passion for creativity has shaped her life and inspired countless others.
Barbara has been creating art since she was a child. While in her teens, she wrote and illustrated two children’s books published by Annick Press. She studied mime in Paris, France, and had a touring mime company. Barbara graduated with honours from Ontario College of Art [OCADU], earned her M.Ed. from the Ontario Institute for Studies in Education and taught visual and dramatic arts in high schools for over 25 years. Barbara has received a number of grants and awards for her work, including from Canada and Ontario Arts Councils, University of Guelph's Alumni of Honour (2024), YMCA Three Rivers Women of Distinction (2022), the Rotary Club of Guelph Trillium - Service Above Self Award (2021), National Research Council Canada, and Ontario Society of Artists.
A lifelong advocate for the arts and an inspiring force in the fight against Parkinson’s Disease, Barbara has dedicated her life to enriching her community through creativity and compassion. Her passion for art and education led to a distinguished career with the Toronto District School Board, culminating in her role as Head of Visual Arts at Northern Secondary School. Her influence as an educator left a lasting impact, nurturing the talents of countless students.
After being diagnosed with Parkinson’s Disease in 2020, Barbara transformed a personal challenge into a platform for helping others. She created the innovative “Mime over Mind” program, which blends her background in mime with therapeutic techniques to support those living with Parkinson’s. This program has gained international recognition and is now part of the University of Guelph’s new Bachelor of Creative Arts, Health, and Wellness degree. She is also on Canadian Open Parkinson Network’s (C-OPN) Parkinson Community Advisors Committee.
Tell Me More About You and Parkinson’s Disease
“I was diagnosed with Parkinson’s in January 2020—a moment that turned my world upside down. I had thought my symptoms might be due to an essential tremor or a pinched nerve, but I never imagined it could be Parkinson’s. The diagnosis hit me like a punch in the gut. When I was alone with my husband, I broke down and cried. I knew I had to rewrite my future, and it took a long time to come to terms with this life-changing news. What ultimately helped me was the realization that I am not my disease. I’m a person living with Parkinson’s, and I made the decision to live my life fully and purposefully.”
Barbara’s philosophy on life resonated deeply when she expressed it in a simple yet powerful tweet:
Parkinson’scan’tstopmefromdancing Parkinson’sremindsmehowpreciouslifeis. Iamawareofmydiminishingenergyand Timetogetthingsdone.SoI’veremoved Negativepeoplefrommylife,focuson TodayandwhatIcanleavebehind. IfIheargoodmusicyoucanbesure I’llbedancingtoit.
The tweet went viral and became the inspiration for the Dopamine Dance Against PD movement, a global initiative celebrating life, movement, and resilience in the face of Parkinson’s.
Art: A Lifelong Passion
I’ve been creating art since before I could speak. The arts help me make sense of the world and express my thoughts and emotions. Making art is my happy place. I’ve embraced both visual and theatre arts. I had a touring mime company for many years and did street theatre throughout Europe.
My visual artwork reflects different styles depending on the media and audience. As a teenager, I wrote and illustrated several children’s books for Annick Press, and I continue to enjoy acrylic painting as a medium of expression.
Artistic Journey: Adapting to Change
When Parkinson’s symptoms began affecting my dominant right hand, it felt weak and I could no longer hold up my arm for very long to do life drawings or large-scale paintings. This made me quite depressed and I stopped doing drawing and painting for about two years after my diagnosis.
But art found its way back into my life. I started playing with my food and came up with a new art form like “deli Don” whose hair is made from corn silk. These playful creations opened a new chapter in my artistic journey.
While I can still paint, I now work on smaller canvases and rely on tools like an expandable stick to support my weak arm. This tool allows me to rest my arm while painting. Remarkably, I’ve even learned to turn my tremors into an asset, using them to create shading in my drawings.
Art with Parkinson’s: A New Perspective
Since my Parkinson’s diagnosis, I’ve come to cherish the abilities I still have, using my talents to give back and support others. I know my time as an artist may be limited, so I strive to make the most of every moment. It was interesting while making What Parkinson’s Feels
Like at times my arm would get so weak and even hurt that I could not draw. I so wanted to get this book out for my PD sisters and brothers, that by my focussing on the meaning and the beauty of this project, I was at times surprised when my arm would wake up on its own without additional medication and be able to work for me.
The Idea
The inspiration for this book came from a deep sense of frustration. After my Parkinson’s diagnosis, I noticed that when I told people about my condition, they stopped seeing me as a person. Instead, they began to see me as a checklist of symptoms. This feeling of invisibility upset me profoundly, and I wanted to change that.
To express my emotions, I painted an illustration of how Parkinson’s makes me feel. This sparked an idea: what if I combined my art with the experiences of others living with Parkinson’s? I approached Parkinson’s Europe, and they agreed to help me gather insights from people across the globe. The descriptions I received were deeply moving and powerful, inspiring me to bring them to life through art.
The Creative Process
When I read the 50 descriptions submitted by people with Parkinson’s, I often had an immediate, vivid image in my mind. Some concepts were simple and clear, like the illustration of a woman tied up in knots. Others were more complex such as a description likening Parkinson’s to a home invasion. That was quite complex so I had to gather many images and do lots of sketches before the artwork came together Each illustration began as a pencil sketch, followed by layers of watercolour and ink. Once the initial artwork was complete, I scanned the images and used Photoshop to add the finishing touches.
Was it easy to choose?
I selected descriptions that sparked a strong visual image in my mind. In cases where multiple people shared similar experiences, I merged their descriptions into one and created one illustration to accompany it.
Reactions from Contributors
The reactions from contributors were heartwarming and validating. Many thanked me, saying the illustrations made them feel seen and understood. Some shared how the book helped them communicate with their clinicians, while others bought copies to help their families—like the grandmother who gave the book to her grandchildren to explain her changing body.
The Book’s Impact
The response to What Parkinson’s Feels Like has been overwhelmingly positive. I have had many people thanking me for helping them express through art what Parkinson’s feels like to them. It helps people communicate more effectively with others through art because a picture can say 1.000 words in many languages without using any words.
One physiotherapist shared a story about a client with Parkinson’s who struggled to explain his physical challenges. After seeing the illustration of a man walking through wet cement and the woman tied in knots, the client finally felt understood. These visual metaphors enabled the physiotherapist to adjust their approach and provide more effective support.
The goal of this book is to inform, build empathy, and raise awareness about Parkinson’s. By helping people communicate their experiences, it brings us closer together and reminds us that no one is alone in their journey.
Creating these illustrations was an emotional journey. I found myself deeply resonating with the daily struggles faced by people with Parkinson’s. I felt particular compassion for my Young Onset Parkinson’s (YOPD) peers, who often juggle raising families, managing careers, and paying off mortgages while navigating this challenging condition.
Whata marvellous oilpainting youmadeof Barbara, Laurie McGaw!
Made by
portrait painter, Laurie McGaw
Some descriptions stayed with me long after I finished drawing them. For example, Allie Signorelli’s vivid metaphor of floating alone on her back in the ocean, uncertain when a wave might crash over her, but finding calm and glimpses of beauty in her surroundings, was profoundly moving. Similarly, Dave Clark’s reflection on living life in slow motion and finding joy in small things, like brightly colored socks that make him smile, touched my heart.
On a lighter note, I had a lot of fun illustrating “the uninvited guest,” a vivid description contributed by Richelle Flanagan and Dr. Soania Mathur. It was a chance to explore the playful yet poignant imagery that defines much of the book.
Each illustration allowed me to connect deeply with the contributors and their experiences, making this project both a personal and meaningful artistic endeavour.
Plans for the future
I have several ideas in development, but it’s too early to share the details. One project I’m excited about is a series of self-taught therapeutic mime videos, drawing on my background as a professional mime artist. These videos, designed to support people with Parkinson’s, will be available for free on my YouTube channel this spring, thanks to the support of Parkinson’s Canada.
More information about this initiative can be found here. Stay tuned!
Messagetoreaders
Everyonefaceschallengesin life.Forthoseofusliving withParkinson’s,someof thesechallenges,suchas tremor,arevisible,while manyothersremainhidden. Ihopethisbookhelpsto illuminatethefullspectrum ofourexperiencesand remindothersthatweare humansfirst,doingourbest tonavigatelifewith resilienceandcourage. It'snotalwayseasy,but beingseen,heardand understoodcanmakeallthe difference.Ithelpsusfeel lessaloneandIhopethis bookinspiresempathyand connectioninameaningful way.
A Big Thank You to Parkinson’s Europe, PD Avengers, and Parkinson Canada
I am deeply grateful to these three incredible Parkinson’s charities, each of which has supported me in meaningful ways.
• Parkinson Canada provided invaluable support for the creation of my therapeutic mime videos, making it possible to bring this project to life.
• Parkinson’s Europe played a pivotal role in helping me create this book. Without their assistance, What Parkinson’s Feels Like would not have been possible.
• PD Avengers empowered me to become my own Parkinson’s advocate through their informative meetings and extensive network, inspiring me to amplify my voice.
This book, What Parkinson’s Feels Like, is my way of saying thank you and raising funds for these three amazing organizations. It’s also my gift to my Parkinson’s sisters and brothers. Thinking of them fuels my determination to keep giving back through drawing, painting, dancing, and creating.
If you want to know more, just listen to the podcasts with Barbara.
amazon.com.
INTERVIEW
Janneke den Ouden .
. .
Interviewwithwriter JannekedenOuden
Interview Janneke den Ouden
Author 'Drop Dead' a thriller
I had wanted to write books for many years. Because I had a nice but busy job, a large family and the necessary social contacts, it never happened. I kept putting it off. When Mr. P. came to live with me, I realized that I really had to start writing. The clock is ticking. It was beyond doubt that my first book would be about Parkinson's. It had to be a book that was mainly about recognizability, for fellow sufferers with the disease but also for their partners, children, friends, neighbors, etc. It resulted in ‘Dagboek van een triller’.
That I wrote a children's book immediately afterwards: 'Stories and verses for sweet and naughty children' felt just as natural. Something to leave to my grandchildren, but also because as a child I really thought I was in heaven during my first visit to the library. I didn't even know the institution existed. The downstairs neighbour, a Dutch teacher, asked my mother if she could take me there. I can still remember every moment of it so well. The entrance, the large, wide staircase leading upstairs, the light coming through the windows and the low white wooden shelves full of books before which I knelt down. I was allowed to choose three books and was told that if I had finished the books and returned them, I could take three new ones with me. How happy I was when I was given permission to go to the library more often. Reading is so important for children, we really need to encourage it.
But even before I started writing about Mr. P. I had been dreaming for years about writing thrillers (possibly a biography or travel book). I never had the desire to write sappy novels.
There is nothing wrong with that, but it does not suit me. I like suspense, a surprising plot twist and main characters who, just like in real life, are complicated and therefore interesting to write about. I like to use my imagination.
Inspiration for characters
When you are going to write a book you need a plan. You make a synopsis, that is to say a kind of blueprint of your book. What is it about, which people play a role, how does it end, who is your target audience, etc. You briefly write down the characters and what is going to happen to them. Of course you will look for information that you need to make it work. When I describe a person who is narcissistic I want what I write to be correct. If I want to write about a nightclub owner or a firefighter I want to know what they are dealing with.
The funny thing is that when I get further into the story, the characters tell me their correct name and additional personal facts such as profession, hair color, peculiarities, etc. So it can happen that in the beginning I call someone Bob and at a certain point I change that name to Maurice because the character makes that clear to me. The characters really come to life for me and I start to love them, no matter how annoying they can be sometimes. I often forget that I made them up and that they don't really exist. I have even shed a tear for a character once, fully knowing that I had just made up both the person and the event myself ;-)
Interview Janneke den Ouden
Author 'Drop Dead'
The Story
I came up with a plot before I started writing. But to be honest, I did choose a different perpetrator at some point. That felt so much more right.
Writing process
Writing a book is quite a project. I would love to move to a quiet place with my husband and our tent for a few weeks now and then to really be able to surrender to writing. Now the agenda is full every day with the worries that everyone has. Often very nice things but this year I want to find a better division. First writing and only then a lot of nice things. Writing is also very nice by the way!
Time and dedication
I write quite fast and quite easily. I wrote the basics of the book in a few months but still wanted to make a lot of changes and additions. I noticed when Bart and I went to France for a few weeks I got around to writing much more easily and I also had a lot of inspiration. I hope I learn to adjust my agenda to that. I am the head of agenda management myself so I have to get started on it myself.
Did your experience in the theatre make you start writing?
Ha ha, no. It's more the other way around. You look for a workplace that suits you. I haven't changed in all those years. My work environment did ensure that I saw an enormous range of performances in all kinds of genres and that I felt very much at home there. My colleagues did notice how much imagination I had.
As
a child and teenager I wrote regularly, but unfortunately none of it has been preserved.
Creativity was not encouraged at home either. I loved to draw and paint as a child and was thrilled when I was allowed to take drawing lessons after much nagging. Unfortunately, I was only able to attend one lesson. My parents bought a house and the money had to go towards the house. For that first lesson I had to draw a fence. I went out and drew a fence in a meadow with charcoal. No idea if it was really good. I shredded the drawing and flushed it down the toilet. Oh well, I guess I didn't lose a Rembrandt ��
A single poem escaped the trash in a surprising way and it was great fun to find it again last year. My niece recently came with a note that I wrote when she and her parents were on holiday in Switzerland for a week and we, as a family from the inner city, were allowed to stay in their house in Zeeland (The Netherlands) a week. I wasn’t sure whether my niece knew that I had slept in her bed and felt the need to tell her and to confess that I had played with her toys. So that she kept that note all those years. I wrote that I noticed that she so many dolls and I offered that she could play with my dolls that, to with the doll clothes, were in a box on top of the cupboard.
Special writing style
I often hear that I have a recognizable way of writing that is easy to read. So I don't think about it any further. This style: that's me!
At work I have written many letters. I can write quite high-flown and businesslike epistles and I really enjoy complicated sentences with words that are only used sporadically. I was chairman of the Works Council for over twelve years and with the transition to my own collective labor agreement and later a merger I could indulge myself in many epistles. But writing books is much more fun.
Interview Janneke den Ouden Author 'Drop Dead'
An exciting and beautiful
book ...
I came up with the plot and made a very short summary of the story. That is necessary, I compare it to a renovation in your house. Then you do not start by taking out a wall but first think about whether you want a bigger room. It is also not the same as the back cover because there you certainly do not write down how it ends.
I really wanted a story in multiple perspectives, that is to say a story told by all the characters. In Drop Dead! there are six. That is not common in the Netherlands and I was repeatedly strongly advised not to do that. The reader would find this much too difficult and would not be able to handle it.
I honestly think you shouldn't underestimate the readers, they can handle it. I'm a little bit stubborn and so I wrote it from six characters, exactly how I wanted it.
Why?
The
book presentation:
“I was really looking forward to it. You work towards that moment and then you want it to happen.”
This time I was terrified to send the book out into the wide world. This book is not autobiographical and not an average book. A book is a child of your brain and as a writer you are proud of the child. What if people thought it was an ugly stupid child? The day after the book presentation the very first beautiful reaction came in followed by many more in the days after. I could breathe a sigh of relief. They were unanimously beautiful warm wonderful reactions. I read them twenty times. I also saw five star reviews at Bol and Bruna and the Readshop. But I still lack the self-confidence that I have written a good book. I am also such an irritating type who can receive 99 beautiful reactions but can lose sleep over a single less positive reaction.
Oh yes, you asked which reaction particularly touched me. A very original reaction, namely this one: 'If I get Alzheimer's later, which I hope not of course, I will have one consolation. Then I can read this beautiful book every day and enjoy it every day.'
Relief that it had gone well, that it was fun but also the realization that quite a few people had bought my book VAL DOOD! and would read it at home. I really hoped that they liked it.
Can you reveal your favorite scenes in your book?
I'll only tell you roughly which two pieces because I don't want to give anything away �� The piece where Jenske finds Roos on the bench in the garden and a letter from Roos to her sister. People who have read the book will know immediately which piece I mean! 29
Already have a new project in mind?
Yes, I have a lot of ideas. Even for multiple books and probably too many ideas! Like a psychological thriller called ‘Imping Poison’, a book about DBS called ‘Give me a DBS-je!’ And a sequel to Diary of a Triller.
Nobody knows what the future holds but I will do my best to write more and will soon start writing the next book. Of course I will continue to write my column and my blog on jannekeschrijft.com. I have many followers on this blog who enjoy reading my travel reports. It is funny to see that some days where I think not much spectacular happened actually attract a lot of readers. Probably the recognition again. ?
What is your biggest wish?
That I will always remain exactly the same annoying person. My grandmother was right when she said to me at the age of ninety: 'On the inside I am exactly the same as when I was eighteen. Only the outside has changed.' She peered thoughtfully out of the window and sighed: 'If I were young now I would ride a motorcycle.'
Family is important, every child wants to be seen. Solidarity is important. Do secrets always have to come out? And sometimes revenge can feel good:-)
I totally understand that you don't want to miss this breathtaking thriller Val Dood’ (drop dead) by the talented Janneke den Ouden! This gripping book is now available at all (online) bookstores (only in Dutch). Let yourself be carried away by a bloodcurdling story full of suspense and intrigue. Don't miss it!
Title: Fall Dead Author: Janneke den Ouden ISBN: 978-94-6511-
Title: Fall Dead Author: Janneke den Ouden ISBN: 978-94-6511-
332-6 Price: €19.50 Theme: Exciting literary thriller, fiction
332-6 Price: €19.50 Theme: Exciting literary thriller, fiction
Contents: Contents:
Two sisters, Lynn and Roos, share a gruesome secret about an
Two sisters, Lynn and Roos, share a gruesome secret about an event from their childhood. The secret has marked and colored event from their childhood. The secret has marked and colored their entire lives. When Lynn gets married, she decides to reveal their entire lives. When Lynn gets married, she decides to reveal the secret in order to face the future with a clean slate. She the secret in order to face the future with a clean slate. She encounters fierce resistance from Roos, because she knows one encounters fierce resistance from Roos, because she knows one thing for sure: the past must be left alone. Can sisters trust each thing for sure: the past must be left alone. Can sisters trust each other? Do secrets always have to come out? In a surprising way, other? Do secrets always have to come out? In a surprising way, the reader follows all six characters in this book, who slowly but the reader follows all six characters in this book, who slowly but surely head towards an ending that none of them saw coming. surely head towards an ending that none of them saw coming.
. . . . . May23,2025
A day for women with Parkinson's made possible by Recreation park De
Dikkenberg and
and Parkinson Event 2025
The third edition of the Woman and Parkinson Event is just around the corner! What started as my initiative in 2023, quickly grew into a great success. During the first edition, the participants radiated, which immediately called for a sequel—with twice as many women. In 2024, another beautiful day!
This year we welcome up to 50 women again at Recreation Park De Dikkenberg. A place in the middle of the forest, where we can come together in a relaxed atmosphere. On the terrace we enjoy nature, the weather and especially each other's company. This is a day especially for women, to exchange experiences, inspire each other and find connection.
Just like previous editions, we have a special guest. This time we will talk to Judith Tielen about women's health. She tells us about her work and listens to our experiences as women with Parkinson's. Judith, thank you for being there and entering into dialogue with us!
In the afternoon there is again a varied program on the schedule, with workshops such as urban poling, yoga and get to know your color family. This year Dominique, Els and Wendy will guide this day. There is plenty of room to talk to each other and make it a pleasant afternoon.
Wendy: “I want to see you shine again today!”
Review 2024
AGENDA AGENDA
11:10 - 11:30 COFFEE BREAK 11:10 - 11:30 COFFEE BREAK 09:30 - 10:00 RECEPTION WITH 09:30 - 10:00 RECEPTION WITH COFFEE AND SOMETHING TASTY COFFEE AND SOMETHING TASTY
12:15 - 13:15 LUNCH BUFFET 12:15 - 13:15 LUNCH BUFFET
11:30 - 12:00 In conversation with 11:30 - 12:00 In conversation with Judith Tielen - member of the Judith Tielen - member of the House of Representatives House of Representatives 14:00 Wendy in conversation with 14:00 Wendy in conversation with
10:10 - 11:10 In conversation with 10:10 - 11:10 In conversation with Judith Tielen - member of the House of Judith Tielen - member of the House of Representatives Representatives 10:00 - 10:10 OPENING 10:00 - 10:10 OPENING 12:00 - 12:15 Exercise 12:00 - 12:15 Exercise Woman&Parkinson2025 Woman&Parkinson2025 YouAreSoBeautiful YouAreSoBeautiful
May23,2025 May23,2025
13: 15- 15:16 WORKSHOPS 13: 15- 15:16 WORKSHOPS
Urban Poling with Hans Louwerse Urban Poling with Hans Louwerse from Parkinson Boxing NL from Parkinson Boxing NL
"Get to know your most beautiful "Get to know your most beautiful color family - for more personal color family - for more personal power through color" with Ricky power through color" with Ricky Kamphorst - Studio Hoofdzaken Kamphorst - Studio Hoofdzaken
13:15 - 16:00 RELAX Meet & Greet 13:15 - 16:00 RELAX Meet & Greet
Photobooth Photobooth Yoga with Dominique Prins-König Yoga with Dominique Prins-König
16:00 - 16:30 End 16:00 - 16:30 End
Youareso beautiful!
INTERVIEW Judith Tielen Member of the House of Representatives
. . .
Judith Tielen
Member of the House of Representatives
You studied medicine and then worked in the business world, including as a marketer at P&G Pharmaceuticals. How did your interest in medicine develop?
“I once thought that you had to choose a profession that you would do your whole life until you retired and the only thing that seemed fun to me for such a long period was to become a doctor: varied work, contact with people, knowledge about health and illness... The study was very interesting, I still find it fascinating to learn more and know how the human body works and what medicines and treatments can do. But I also discovered that you learn more and more about an ever smaller part of a person and that I have a very broad area of interest and like to get involved in many things. That is why I started working in the business world after my studies with politics as a hobby.”
You have made the transition to politics. What was your motivation to take this step?
“I feel involved in social issues and became a member of the VVD after my studies. I quickly became an active member and started to enjoy talking about issues and thinking about (unnecessary) rules or problems in our country. At a certain point I didn’t just want to do that within the VVD, but also really want to enter the political arena. So when the municipal elections came in 2014, I put myself forward as a candidate and became a member of the municipal council in Utrecht.”
What motivates you most in your work as a Member of Parliament? Are there also things you don't like as much?
You have made the transition to politics. What was your motivation to take this step?
“The best part is the conversations with all kinds of people in the country and visits to the places where they work. From my Health and Care portfolio, these are often nurses and other care professionals and companies that make things for good care. I always get energy from the way people talk about their work and how passionately they talk about which rules or policies should be different. Sometimes I can also do something for them. Sometimes.”
At the Woman and Parkinson Event you will talk to women who have this disease. Can you tell us a bit more about who you are and what these women can expect from you?
“I am Judith, 53 years old, mother of three and living with my husband and two children in Utrecht. I am passionate about women's freedom; after all, women deserve more... at least more than they get. This is about financial independence, but also about the position of women in society and in organizations. About freedom of choice. I hope to talk to women at the event to hear how they experience all this and what it takes to experience optimal freedom.”
How do you feel about talking to women with Parkinson's?
“I also expect to gain a lot of energy and inspiration from these conversations, because I think I can learn a lot about what it is like to be a woman with a chronic illness, Parkinson's.”
You are committed to general health and therefore also to women's health. What do you think are the biggest bottlenecks in women's health?
“Medicine is largely based on knowledge about men. Diagnosis, treatment and medicines have largely been tested on men and much less (sometimes not at all) on women. As a result, diagnoses are missed and treatments are less effective. I also think that many women do not always feel heard and seen by doctors. People are more than their illness, but doctors do not always see that. That also applies to men, but for women I think it is even more important not to be approached and treated only as a 'health complaint'.”
What concrete steps do you think need to be taken to improve women's health?
“In our election manifesto, I advocated a national strategy for women’s health, and a motion was submitted for this by a group of MPs from various parties, including me. This national strategy must demonstrate an ambition to improve women’s health, including measurable goals such as quality of life, well-being, absenteeism and outflow. This requires additional and targeted scientific research, but socio-economic research questions also play a role in this.”
Are there already plans or initiatives to structurally improve care for women?
“They certainly do exist. There is a scientific research programme from ZonMw (the organisation that commissions medical-scientific research) and under the leadership of a number of powerful women, such as cardiologist Jolande Wittekoek and gynaecologist Marlies Bongers, the medical world is also fighting for more attention for women in healthcare. There is attention for it in all kinds of healthcare organisations, but it is still somewhat fragmented and there is often a bit of a laugh about the health and care of and for women.”
If you could make and implement one policy decision immediately, what would it be and why?
“I would make quality of life a mandatory standard for all treatments and medicines. In the medical world, too little attention is sometimes paid to who the person is behind the disease and what is important to that person in life. By giving quality of life a greater role in the assessment of treatments, 'the person' will become more central.”
You are also the chair of the Social Affairs and Employment committee. Can you do something for women with Parkinson's within this domain?
“As committee chair, I try to keep my opinion on social affairs and employment somewhat in check, but I do have that opinion. I have also been a spokesperson in this domain and have advocated a lot for, among other things, guidance of chronic cancer patients in work and participation. This could of course be extended to chronic patients, especially women. We can use what we have learned from chronic cancer patients for that.”
My platform stands for inspiring each other to deal positively with your diagnosis. What is your view on this? Do you think there should be more attention for the power of a positive mindset in illness? And what do you think should change in this.
“Your positive and energetic attitude is also inspiring to me. Especially because I think that brings strength. Ultimately, illness is more than just a physical and medical problem, and it affects other things in life. I am convinced that with a positive mindset, all those other things are also easier to bear and that that in turn affects the physical. I think there are various scientific studies on that. With positive health you get further and a positive mindset contributes to that.”
What would you like to say to women with Parkinson's?
I look forward to meeting you, special, strong, unique women. Let us know how your quality of life can be improved and what politics can do about it. M E M B E R OF T H E 2 ND A
Parkinson's affects women differently.
Time to bring this up for discussion.
INTERVIEW ParkinsonBoxingNl UrbanPoling
Hans Louwerse of Parkinson Boxing NL is our loyal partner during the Woman & Parkinson Event. In the first year, the women received Parkinson boxing training, the year after that there was the Body & Brain Training. This year they are introducing something new: Urban Poling.
How did you like being there all the times, Hans?
It was a pleasure to be there and to give my workshops. I enjoy connecting with people and helping them. It is always nice to see participants actively participating and benefiting from what we do.
What do you think of the set-up and concept of the Woman & Parkinson Event? What do you think makes it valuable?
The event is very accessible and approachable. There is r share experiences, and feel supported. What makes this on creating a positive atmosphere in which both physica central.
It offers practical information and workshops that directly contribute to improving the quality of life.
Do you see clear differences between women and men when it comes to parkinson? Both in how the disease manifests itself and in parkinson boxing for example?
Yes, there are definitely differences, both in how the disease presents and in the responses to activities such as parkinsonian boxing. Women can often experience different symptoms than men, such as stiffness in certain parts of the body.
In the context of Parkinson's boxing, women may be more susceptible to fatigue or may seek other ways to improve their strength and balance. It is important to consider this when offering exercises.
Are there any particular exercises or activities that women in your classes find particularly enjoyable or useful?
Women seem to benefit most from exercises that help them regain control over their bodies and that they can apply to their daily lives. Exercises that promote mobility, such as light strength training and balance and coordination exercises, are often very helpful. Cognitive exercises that keep the mind sharp, such as combining physical movements with mental challenges, are also highly valued.
You are giving a workshop at this event. Can you tell us a bit more about that?
In our workshop walking with Urban Poling walking poles (nordic walking) we focus on strengthening both body and mind. We do exercises that are specifically aimed at improving mobility, balance and strength. The idea is to let the participants experience how they can improve their daily functioning and feel stronger.
What can participants expect from your workshop? What do you hope they will take away from it?
In my Urban Poling workshop participants will learn how to use walking sticks effectively to improve their mobility and balance. Urban Poling is a form of Nordic walking specifically designed for and created for people with Parkinson's, where you use the sticks to activate your entire body, which is not only good for the legs, but also for coordination, core and upper body.
Participants can expect to be introduced to proper technique and how to apply this technique to improve posture and stability while walking. What I hope they will take away is not just the technique itself, but also an understanding of the benefits of this form of exercise for their overall health and how it can help them increase their confidence and mobility.
Do you think it is important that there is special attention for women with Parkinson's? Why?
Yes, I think it is definitely important. Women often have different care needs than men, both in how the disease manifests itself and in how they deal with it. Special attention for women ensures that we can take those differences into account and that women receive the care and support they need to maintain or even improve their quality of life.
Finally, what would you like to say to the women coming to this event?
I would like to say that it is important not to give up, even if it is difficult sometimes. You are not alone. This event offers you the opportunity to empower yourself, learn and grow. Together we can become stronger and face the challenges that Parkinson's brings.
Do you have a question for Judith Tielen, our guest who will talk to the women about women's health?
I would like to know how Judith thinks we can further improve the support for women with Parkinson's, both physically and mentally. What does she think are the most important steps we can take to optimally support these women?
INTERVIEW
Dominique Prins-König
Yoga Workshop . . .
What was your first impression when you heard about this event?
I thought: what a great idea! I was also curious about all those other women with Parkinson's. During the first edition it was a nice mix of 'old acquaintances' and new people. And the second time I got to know nice new women again. In addition, it is very nice to see and talk to acquaintances again.
How do you like the setup and concept of this event? What do you think makes it valuable?
I think the set-up is well-found, a nice mix of informative, relaxing and exchanging experiences. Exactly the three things that make a day successful for me; you come home relaxed, with new information and recharged by the nice contacts. This is of course a bit of 'we from wc-eend advise wc-eend', since I assist in the organization of this event. ��
Are there any special stories or experiences from previous editions that have stayed with you?
What I remember from each edition is the mutual connection, the relaxed atmosphere and the cheerfulness, despite the serious subject that connects us all. Being made beautiful by a make-up artist, dancing with Sabine, learning about happiness; I find them all equally valuable memories.
You are giving a yoga workshop during the event. What can yoga mean for women with Parkinson's?
Yoga can do all sorts of things for you, both physically and mentally. For example, yoga helps to keep your body flexible, to release tension (de-tension) so that you experience more space and it also helps to feel your body more consciously, so that you also feel better what is good for you. In addition, yoga helps to make your head quieter, to find more balance and to become more flexible, also in your brain. In this way you learn not to keep focusing on the limitations in your life, but also to see and use the space between those limitations.
Yoga teacher and living with Parkinson's Yoga teacher and living with Parkinson's hherself erself
Dominique Prins-König: Dominique Prins-König:
Are there specific yoga exercises that women with Parkinson's find pleasant or helpful?
Of course, this varies greatly from woman to woman, but what many women, and certainly those with Parkinson's, like to do are chest openers, where you spread your arms wide, lift your head and open your entire front. This helps against the hunchedover posture that often occurs with Parkinson's. People also often find postures that create space in your (lower) back, such as the cat, pleasant.
If women want to do yoga themselves after the event, how can they find a suitable parkinson yoga class? Where do you teach yourself, and do you offer online classes?
On yoga4parkinson website you can see where yoga4parkinson lessons are given in your area. I teach twice a week in Hoofddorp. On the website you can also find information about online lessons.
How did you experience the previous editions of this event?
"Both times were incredibly valuable. The contacts, the cheerfulness, the information. I wouldn't have wanted to miss it and am already looking forward to May 23!
Finally, what message would you like to give to the women attending this event?
I would like to say: let yourself be surprised and immerse yourself completely in the warm atmosphere of this special day.
What would you like to ask Judith Tielen? What improvements do you see as necessary in the care and support for women with Parkinson's?
I think it is first important to map out the differences between men and women when it comes to health and diseases. Medical science has only just discovered that women are not ‘a kind of men with breasts’. What consequences does that have for symptoms, the effect of medication, the course of diseases?
INTERVIEW Ricky Kamphorst
. . .
Ricky Kamphorst
As an ambitious and passionate creative entrepreneur, I inspire and support YOU, the entrepreneurial woman, to embody your essence!
The most beautiful and best version of yourself!
Inside-out: As a certified Personal Power Expert, trainer, mentor and coach, I offer guidance in all these areas to increase your awareness and strengthen your self-confidence, so that you can show your power with impact.
After all, trust makes you attractive!
My mission is to help thousands of women with impact to ‘show who you are’! I want to emphasize how special you are! When you embrace your greatest strength and confidently show who you are, you will be better seen, heard and appreciated. This will allow you to achieve and mean more. Increase your impact and authentic visibility!
Result:
Deepinsightsintoyourselfandaconfidentappearancethatreflectsyour innerstrength.
Appreciationforyouruniquetalentsandyourself.
Insightintoyourgreateststrengths,balanceandmotivations.
Awarenessofthepositiveinfluenceofcoloronyourappearanceand communication.
MoreunderstandingandappreciationfromHead-Heart-Coreissues throughconnection.
Collaboratemoreeffectively,leadingtobetterresults.
Gettingthemostoutofyourselfbyusingyourcolor,withtipsfor creatingasustainablewardrobe.
Personal Power Methodology
Personal Power is a unique method to measure, strengthen and make visible your Personal Power. With the online Personal Power Test, supplemented with relevant reports and advice, you will quickly gain insight into your greatest strength, deepest motivations and the path that suits you best. In addition, you will receive practical advice for an appearance with impact that makes the best version of yourself visible. This is the first method that connects personality with appearance, and challenges you to literally step into your power and show who you are and what makes you unique. A picture says more than a thousand words.
THE PKM HAS BEEN VALIDATED BY RESEARCH IN COLLABORATION WITH THE TU EINDHOVEN AND ACHIEVED A SCORE OF 9.0. IT USES PRINCIPLES FROM POSITIVE PSYCHOLOGY AND NLP FOR PERSONAL DEVELOPMENT.
About Personal Power and the Magic of Color
Can you tell us more about the workshop ‘Get to know your most beautiful color family’?
The full name of the workshop is ‘Get to know your most beautiful color family for more Personal Power through Color’. The goal is to give participants better insight into themselves, their energy and balance, and to strengthen their self-confidence, so that they feel better about themselves. Before the workshop, participants take an online test, the results of which are processed into a personalized report. This report reveals their most beautiful color family and is sent by email afterwards, together with a symbolic color family heart, as a reminder.
What can participants expect?
During the workshop, participants will discover their own color family that suits them best, including the associated motivations, motto and balance of that color family. It promises to be a cozy, interactive and inspiring session, in which warm connection and contact are central.
What does color mean to you personally?
For me, color is a powerful tool to show my expression and self-awareness, in harmony with who you are. This is based on the psychology of color and its meaning and power. How does color influence your daily life?
With the help of color I shape my appearance and stimulate creativity and personal growth, both in my professional and private life. This helps me achieve my goals and is the key to success, as well as my blueprint for health, fun and happiness.
What can color mean for women?
Color can support women in increasing their self-confidence and strengthening their sense of power and energy. But I don't want to get too far ahead of myselfI want to reveal the magic of this during the workshop!
How do you apply your color family in your life?
In a playful and creative way! I think it would be fun if the participants could guess or discover during the workshop which color family I belong to.
THE PKM HAS BEEN VALIDATED BY RESEARCH IN COLLABORATION WITH THE TU EINDHOVEN AND ACHIEVED A SCORE OF 9.0. IT USES PRINCIPLES FROM POSITIVE PSYCHOLOGY AND NLP FOR PERSONAL DEVELOPMENT.
What does Personal Power mean to you, and what role does color play in that?
In recent years, I have also experienced a series of personal setbacks and life-changing situations that have had a major impact on both my personal and professional life. By recognizing my own positive personal power and using color, I have overcome many things, which has brought me to where I am today. I am grateful for the opportunities in full ‘presence’! In addition, I like to be inspired by the impact of color in culture and art.
How did the Personal Power Method come about?
What inspired you to get started with this? This methodology emerged from the combination of personality and appearance. Throughout my entire entrepreneurial career, I have had a great interest in people, their charisma, ‘presence’ and the communication about who they are or want to be from a connection with their highest potential. This methodology is a valuable instrument that I use in my 1-on-1 trajectories, both individually and in teams or groups. What would you like to say about dealing with illness positively through color?
As a creative person I have studied Parkinson's and its impact on daily life. What I always say is: "I am not my disease, I am a woman."
You are a woman, a unique individual with your own name, your own talents, your own qualities and motivations for how you want to stand in life. The Personal Power Method helps you discover who you really are and what you can still do. What do you like? How can I use this power!
What message would you like to convey to the women participating in the workshop?
Come and register quickly for the workshop ‘Get to know your most beautiful color family for more Personal Power through Color’. For more energy and balance, more inner peace, feeling better about yourself and enjoying life more with impact! I look forward to providing this workshop for you!
INTERVIEW
TogetherforSharon TogetherforSharon
**ExclusiveInterviewwithGeorgeAckerman: ExclusiveInterviewwithGeorgeAckerman:
RaisingAwarenessThrough RaisingAwarenessThroughEventsandAdvocacy* EventsandAdvocacy*
Exclusive Interview with George Ackerman
George, you’ve developed an interesting concept: zooming in for ten minutes on online events. Tell is more about it!”
“Absolutely! I wanted to create a way for people to engage without requiring a major time commitment. By participating in short, ten-minute online at events, we can highlight what people around the world are doing. It’s a fresh approach to raising awareness while keeping the format engaging and accessible to a broad audience.*
What kind of events have you organized so far?
“I’ve hosted events across the U.S., from football stadiums to parks. But I’m eager to expand these events to other locations and involve more communities. The more people we can reach, the greater the impact.”
Have you ever hosted an event specifically for Women and Parkinson’s?
*Not yet, but that’s why I’m so excited to focus on your event now. It’s essential to raise awareness about how Parkinson’s affects women and young people. Many don’t realize the challenges they face. If I can reach even one person and make a difference, that’s a success. I hope this event will help spread the message far and wide.*
Where can people find your podcasts?
“My podcasts are available on my YouTube channel and my website, togetherforsharon.com. By clicking on the podcast section, you can access ‘Virtual Road with George,’ where I discuss various awareness topics and events.”
Raising Awareness Through Events and Advocacy
Is there anything you’d like to say to the women participating on the event?
“Definitely. I like Wendy, a young woman who has been like family to me for over two years. Together, we know our voices are stronger than ever. We cannot stop fighting until there’s a cure for everyone with Parkinson’s. Women need to have a strong voice in this discussion because the disease impacts them in unique ways.*
You’ve recently written a book. Can you tell us more about it?
“My book, Policing and Parkinson’s, is available as an e-book to make it more affordable and accessible. As a professor with a doctorate in criminology, I discovered a critical issue: individuals with Parkinson’s who are arrested without their medication may exhibit unusual behavior. This can lead to officers mistakenly assuming they are intoxicated, which can result in dangerous situations. There’s little research on this topic, and my book includes 200 references and interviews with 30 politicians and Parkinson’s patients. Shockingly, 99% of politicians I spoke with had never even heard of these concerns. My dream is for every police academy in the U.S. to be educated about Parkinson’s,but this requires the backing of major organizations like the Michael J. Fox Foundation.”
Any final thoughts about the upcoming women and Parkinson’s event?
“I believe this event will be incredible, but we need to reach more people, encourage donations, and get more individuals involved. Our strength is in our unity we’re always here for each other. My hope is that this event inspires even more initiatives to raise awareness and bring about change.*
Thank you, George. It’s been a pleasure speaking with you about this important event See you on the event on May 23!
INTERVIEW Robyn Cotton
. . .
GettingtoKnow RobynCotton
Lifein NewZealand, Writing, andAdvocacyforParkinson’sDisease
Life in New Zealand: A Paradise on Earth
When Robyn Cotton talks about New Zealand, it’s clear that she doesn’t just love it—she’s deeply connected to the land and its way of life. “To be honest, I think we are in one of the best places on Earth!” she exclaims. “I love the green open spaces, the mountains, and, of course, the coastline. There are so many beaches here where you can truly escape the crowds in the summer.”
As a wife and mother, her family is at the heart of everything she does, and the beauty of the country provides the perfect backdrop for their lives. “Other than family and writing, I am passionate about landscape photography, sailing, and hiking in the bush New Zealand is the perfect place to indulge in these interests,” she says with a smile.
Robyn’s professional journey has been one of innovation and leadership. “My career in the dairy industry took me to innovation management, and during that time, I spent a couple of exciting years in the UK,” she shares. “I started my consulting business in 2002 and worked with clients across industry sectors helping them improve their management of research and development. I worked on the board of International Needs NZ, a Christian charitable trust, and was involved with partners in nearly 40 countries. My focus there was to help improve the standard of governance across the global network. What I loved about this work was that every country partner was autonomous and equal, with those partners in developing counties identifying their own needs and establishing projects and programs to address them, enabling partners who could assist to come alongside.”
Creative Writing: A New Chapter
Robyn’s career took an unexpected turn when she discovered a deep passion for creative writing. “It all began with wanting to write some of my story for my family, and that’s how A Skylark Flies came to life,” she recalls. What began as a personal project soon turned into a new calling. “I took a creative writing course because writing creatively is so very different from the formal writing I was used to in my career. I then discovered I had a passion for it.”
A Typical Day Now: Managing Parkinson’s and Staying Focused on Writing
Robyn’s life, however, is also defined by her journey with Parkinson’s disease. “My first trip to a neurologist for tremors was nearly 10 years ago, and I received my early-onset Parkinson’s diagnosis 8 years ago at the age of 56,” she shares. “The diagnosis led me to retire early, so I could de-stress and focus on fighting the disease. Thankfully, my quality of life hasn’t really changed, but now my days are filled with a strict dietary regime and loads of exercise—that is when I’m not at my keyboard writing.”
Despite the challenges of living with Parkinson’s, Robyn is committed to maintaining a positive and active lifestyle. “I try to stay on top of things by staying physically active,” she explains. “It’s about living intentionally and doing what I can to stay well. Writing, too, gives me a sense of purpose.”
On Writing and Thrillers: A New Challenge
“When my friend was diagnosed with dementia, I decided I needed to challenge my brain and thought what better way than to write a crime mystery novel?” she says. The result was The Jibe, a crime mystery that features a protagonist dealing with young-onset Parkinson’s.
Robyn’s writing process is carefully considered. “I approach writing by plotting everything in advance. I needed to develop my characters and sprinkle clues throughout the story, so I found it easier to plan it out,” she explains. “Once I had the chapter outline, I knew what the objective of each chapter would be and treated them as short stories within the greater story. I find it easier to stay on task this way.”
One of the key themes of The Jibe is the portrayal of a young woman dealing with young-onset Parkinson’s disease. “I meet a lot of people with Parkinson’s, and I’m particularly concerned for those with young-onset PD,” Robyn shares. “They face unique challenges young families, mortgages, and are often not in a position to leave work. The workplace doesn’t always respond well to their diagnosis. There is no textbook on how to tell your children. The stereotypical image of a Parkinson’s patient is usually an elderly man, which makes it even harder for younger people facing this disease.”
The message behind Mary & Me and writing for awareness
Another of Robyn’s books, Mary & Me, delves deeply into the emotional and physical journey of living with Parkinson’s. The novel is a reflection of her personal exploration of the disease and her desire to remain resilient. “When I was diagnosed, I was researching Parkinson’s and looking at lifestyle changes that could slow its progression,” she says. “I also focused on staying positive and resilient. That led to Mary & Me, where I wanted to share what I had learned and take people on a journey from the despair at the time of diagnosis that many of us experience, to hope and resilience. And I wanted to give people some insight into what it’s like to be diagnosed with a chronically progressive disease.”
I decided to include the character of Mary, set in the early 1800s, to remind us above all how lucky we are to live in this time in history, where social acceptance is the norm in most places and advances in medicine and knowledge can help us manage disease more effectively, she explains.
Overcoming Challenges and the Rewards of Writing
Writing isn’t always easy, especially for someone with Parkinson’s. “Writing a novel is no different than running a marathon,” Robyn says determinedly. “You set a goal, you go for it, and when you cross the finish line, it’s so rewarding.” Despite the challenges of typing with a tremor, Robyn’s perseverance has paid off. ““Typing with a tremor is challenging — it can feel like you’re dyslexic sometimes — but it’s worth persevering.”.”
The positive feedback from readers has been a rewarding aspect of her writing journey. “I have had a lot of excellent feedback on all three of my books.” With regard to Mary & Me, she says, “Some people with Parkinson’s have told me that the book validated their own journey. A neurologist wrote ‘it is right up there with any other first-person account of Parkinson's that I have ever read’ and he recommended it to his medical colleagues. Family members have found it helpful in that it has given them a better understanding of what their loved one is going through. One man contacted me to say he really appreciated the book and it had ‘opened a door to a world he knew nothing about’. I have also been told that the story is applicable to any degenerative disease.”
“The Jibe has also had many positive reviews in fact I think I’ve now found the genre most suited to me. Many people have contacted me to ask when the next one in the series (with the same detectives) would be out. Those comments motivated me to write The Boat Shed and that manuscript is now ready for publishing!
Positivity and Parkinson’s: A Life of Resilience
Robyn’s advocacy for living positively with Parkinson’s is a central theme in her life and writing. “Thankfully, my Christian faith helps me stay optimistic,” she says. “I believe in doing my part to maintain my lifestyle changes to help manage the disease, and I trust that God will do the rest.” Robyn also stays on top of the latest research and is hopeful about the future. “I believe that I will see some positive strides forward in my lifetime and I just need to stay as well as I can while I wait for these to become available,” she says.
“Life is so much more fulfilling when you approach it with a positive attitude despite what you may be dealing with. With PD, we run on low levels of dopamine, which is one of the feel-good chemicals in the brain. So, unlike most individuals, I believe we need to make a conscious decision every morning to be positive and make the most of each day. Learning to live in today and not dwell on the future is also key to remaining positive it’s something I’ve had to learn to do.”
Her message to others living with Parkinson’s is simple yet powerful. “Life doesn’t end with a diagnosis, and I believe you can change the trajectory of the disease through lifestyle changes. I’m fighting it by being PEPPD—Prayer, Exercise, Positivity, Pills and Diet. And my favourite words are ‘Take that Parkinson’s!’”
For Robyn, lifestyle changes have been crucial in managing her Parkinson’s symptoms. “Firstly, I need to acknowledge the disease is different for all of us. When you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s.
I’ve made two major lifestyle changes.
The first is diet. Soon after I was diagnosed I was lucky to be included in a dietary trial with Dr Matthew Phillips (www.metabolicneurologist.com) where I was given the keto diet. I have now been on a low carb diet for around 8 years and for the last 5 years have included intermittent fasting. I follow this diet 7 days a week 365 days a year. The objective is to put my body into ketosis for at least 4 hours a day. As a result, my gut health is better and over the last year we have noticed I have regained the automatic swing of my arm when walking and my PD has not really progressed at all.
Exercise is the second major ingredient. I was fortunate that I was relatively fit when diagnosed. I now target cardio (2 hours in my top 20% heartrate per week), agility, flexibility, balance, strength, power and cognition. To achieve this I use boxing, tennis, pilates, hill walking, weight training, treadmill, exercycle, table tennis, paddleboarding and mix it up depending what I have on each week and what the weather is doing! I think the key to staying motivated is to have variety and lots of fun.”
Parkinson’s Awareness and Advocacy
Robyn sees her writing as a tool for raising awareness about Parkinson’s. “Creative writing helps readers get into the headspace of a character, which builds empathy,” she explains. “It also provides an enjoyable method for sharing information and facts without being a heavy and sometimes arduous read. Therefore, it’s an ideal method for raising awareness and getting messages out to a wider audience.”
Through her work, Robyn is changing perceptions about Parkinson’s disease.
“In both Mary & Me and The Jibe, I wrote about female characters with Parkinson’s,” she says. “And in the case of The Jibe, a young woman. By writing fictitious characters into a story, you can stay away from the typical stereotype of an old man and hopefully educate readers accordingly. I think it helps readers relate better to those affected by PD and have a greater understanding of the struggles associated with the disease.”
“If we work together, we can achieve a lot. I encourage others to be part of a PD support network which is focused on living positively with Parkinson’s and providing a safe environment where those with PD can relax, have fun and just be themselves.”
FUN QUESTIONS
What’s one thing people might be surprised to learn about you?
“I disliked English at school and dropped it in year 13 for all sciences and maths.”
If you could travel anywhere in the world right now, where would you go and why?
“A cruise to Antarctica for its natural beauty and amazing photography potential.”
Just the way you are
Your favourite song is 'Just the way you are’ by Billy Joel. Why?
“No matter how PD might affect me physically and mentally, I have confidence my husband and family will love me regardless.”
Doyouhavesomethinginmindwhereyou wanttowriteabout?
“Yes,asocialjusticeissuethatI’m passionateabout.Butyou’llhavetoread ‘TheBoatShed’whenitcomesoutlater thisyeartofindoutwhatthatissueis!”
What things gives you joy?
“Family first, followed by nature.”
What is your favourite colour?
“Blue has always been my favourite colour, closely followed by green.”
FavouriteMovie? “Myfavouritemoviewouldhavetobethe LordoftheRingstrilogy.”
Favourite book?
“My favourite book is Ben Hur.” Where can I find the books of Robyn Cotton Visit this link to access Robyn Cotton's website.
“My books are available either directly from me via my website or through printto-order and e-books. Check out Amazon.com. Proceeds from sales of Mary & Me have gone to PD research at the University of Auckland.”
Message to the Parkinson’s Community
In closing, Robyn has a powerful message for people living with Parkinson’s worldwide: “Life doesn’t end with a diagnosis. Parkinson’s isn’t you; it doesn’t define you and it doesn’t change who you are. You just live with it like a thorn in your side. Be courageous, be resilient, be strong, stay positive and live every day to the max and don’t dwell on what the future might look like. Know your PD and face it head on. Be as well as you can be through healthy lifestyle changes while you wait for improved treatments and possibly even a cure.”
COLUMN Janneke den Ouden
A NEW START
I sit in the conservatory, stare at the garden and ponder a topic for a column. It is time for another piece in this magazine. A piece for brave Wendy who had the courage to give her life a new meaning. Mr. P. is still fairly mild to her and Wendy decided to apply, was hired immediately and is again working for a salary for 24 hours a week.
Deep bow for this new beginning. I stare through the glass at a blue sky and realize that at this time of year we are all sensitive to a new beginning. Nature awakens from its winter sleep. In the Nordic countries the trees are turning green again, the bushes are in bud and we rush to garden centers to buy spring flowers.
The shops are full of cheerful Easter decorations, happy chickens, cheerful chicks and colored eggs in all sorts of designs. Easter comes from the word Pesach which means ‘passing by’ or ‘compassion’. A spring festival in which the Jews celebrate the liberation from slavery in Egypt. The Jews were afraid that the pharaoh would change his mind and ran off with half-baked unleavened bread. That is why we eat matzos at Easter. The Christians celebrate that Jesus rose from the dead on the first Sunday after the crucifixion. They used to call that Parsha.
In England they have Easter. That comes from Eostre, the pre-Christian goddess of spring and fertility.
I really need to pick up the pace now and think of a topic for a column. Stop daydreaming, an activity I have almost perfected, I can get lost in thought endlessly.
A NEW START
Take spring. Nature transforms, everywhere you see newborn animals, the rebirth of nature, verges full of daffodils and crocuses. We as humans also want to purify ourselves. Away with gloomy thoughts and ingrained habits. Time to be positive, make a lot of plans, get energy again.
I sit in the conservatory, stare at the garden and ponder a topic for a column. It is time for another piece in this magazine. A piece for brave Wendy who had the courage to give her life a new meaning. Mr. P. is still fairly mild to her and Wendy decided to apply, was hired immediately and is again working for a salary for 24 hours a week.
Our biorhythm awakens and happily ticks its biological clock. We eat healthily again and can already imagine ourselves enjoying long, warm, sun-drenched days. In the summer, you also need less sleep. The days are getting longer, our brains are getting a boost. The meteorological spring has begun and we happily chose this word as the most difficult word of the year to pronounce.
With buckets, mops and cloths at the ready, there is also the spring cleaning, which ensures a good mindset and with which we indirectly clean our brains fresh and clean. Because I am on the eve of a back operation that I am really dreading, I am forced to restrain myself. But I energetically turn over drawers that are far too full and as a reward I get feel-good endorphins from my brain. I also find all sorts of things in those drawers that for a short period transform into drawers with a tidy appearance, ready for another year full of junk that we never throw away immediately. I occasionally sink into beautiful memories.
I have also started writing a new book while I am still working on another book. I dream about a sequel to Diary of a thriller, the third edition of which is very carefully coming into view. My book Fall dead!, a literary thriller, has received wonderful reviews and I am glad that I can still write. Writing activates all sorts of things in your brain. Good job.
A NEW START
Reading books is pure brain gymnastics. By reading books (preferably mine ;-)) new neural networks are created and the communication between your brain hemispheres is strengthened. Your short-term memory improves and your vocabulary grows, as well as your social and empathic skills. Heck, it's also fun.
Especially with a cup of tea and something tasty. Reading for half an hour a day does wonders and reduces stress.
I sit in the conservatory, stare at the garden and ponder a topic for a column It is time for another piece in for brave Wendy o give her life a still fairly mild ed to apply, and is again r 24 hours a
I am a little ashamed of the fact that the Netherlands is in second to last place in Europe when it comes to reading (October 2024 PISA survey). Maybe the government itself does not read enough, they do not know how bad the reading skills are in our country. But you know better now. We produce dopamine when we exercise, but we also produce that substance when we read. Simply because you understand the story and empathize with a character. The production of dopamine is a little slower than when exercising, but it lasts longer. I know someone who did not want to stop reading my book Drop Dead! and she finished the book on her exercise bike. That must have given her an enormous boost of dopamine!
I sit down at the table again, I have to write that piece now. The sun comes out and I can no longer see anything on the screen of my laptop and despite the pain and the approaching operation I feel a wave of happiness going through me.
I am glad that I can still enjoy a beautiful book, that I can still write myself and that people can enjoy it again. I am also glad that I am not a snail. A snail has no heart and can sleep for three years.
A NEW START
I read that and I always save that kind of thing. It will probably come in handy at some point. I dive into a shelf in my dish cabinet and a moment later I notice that I have 29 streamers, neatly held together with paperclips. Wow, 29 streamers, that will be a fun summer!
I sit in the conservatory, stare at the garden and ponder a topic for a column. It is time for another piece in this magazine. A piece for brave Wendy who had the courage to give her life a new meaning. Mr. P. is still fairly mild to her and Wendy decided to apply, was hired immediately and is again working for a salary for 24 hours a week
Reading books is pure brain gymnastics. By reading books (preferably mine ;-)) new neural networks are created and the communication between your brain hemispheres is strengthened. Your short-term memory improves and your vocabulary grows as well as your social and empathic skills. Heck, it's also fun.
I decide that my musings, my loitering at the table in the conservatory is my piece. We all know these kinds of moments, and I hope we all get a lot more of them this spring and summer. I peer at my dresser. It has no less than five drawers!
WENDY'S PARKINSON JOURNEY
Wendy van Wijk-Lugthart: "I have been diagnosed since May 2017 and have a very positive outlook on life. This positivity and doing the things I enjoy so much and reducing the medication I don't need, my symptoms have not worsened since 2017. That is proof to me that this is the right way for me to deal with my illness. In June 2022 I started making a magazine for people with Parkinson's, in which I share their personal stories, blogs and do interviews with researchers and other people who do something for this disease. But mainly filled with how to be positive in life. Negativity does not suit me, I keep it outside. And so my adventure began."
