A Magazine About Parkinson’s and a Women’s Event: How Did These Initiatives Come to Life?
The inspiration for creating a magazine about Parkinson’s and organizing a special event for women stems from my desire to uplift and motivate others living with the disease. My personal journey has taught me the immense value of positivity. When I was diagnosed with Parkinson’s at 47, it was a life-changing moment. Now, at 55, I’ve learned to embrace life in a way that brings me fulfillment and joy.
I’ve always been a calm and peaceful person who values harmony and focuses on enjoying life. These qualities, combined with my professional experience, have helped me recognize my strengths. By taking action and following what felt right, I’ve seen how positively people respond. This has fueled my belief that Parkinson’s doesn’t have to define who you are.
Who you truly are is shaped by how you choose to live your life by the things that energize you and bring you happiness. Feeling good about yourself and embracing who you are can stand apart from the challenges of the disease. While everyone’s journey is unique, hearing the voices of others with Parkinson’s can be incredibly inspiring.
The Women and Parkinson’s Event embodies this beautifully. It’s heartwarming to see how much women enjoy connecting with one another. They value the chance to share their stories, laugh, and even talk about life’s everyday topics. The mutual understanding and connection that arise are priceless.
Through the magazine and the event, I hope to inspire others to find their own way to a fulfilling life, despite the challenges of Parkinson’s.
Positivity is a powerful force and that’s the message I want to share.
FOREWORD
Book: 'Val Dood’ - Janneke den Ouden
Column Wendy
Webinar ProPark
Interview with Frank Schopman
Book: ‘What Parkinson's feels like’
Barbara Salsberg Mathews
A stimulus-friendly December by Monique Thoonsen.
Interview with Frank Roos
Interview with Wim Hofman-De Suite.
Blog Wendy: A day with a golden edge
Wendy interviewed by Janneke den Ouden
Column: A piece of Janneke
Parkinson Boxing Event October 20
Interview with Mark Edward Fuller
Book launch: ‘This Is Me’.
Here it is: Magazine number 10. Unbelievable, ten editions already! What started as an idea to do something that was completely my own, a place to put all my inspiration, has grown into so much more. Sometimes you only discover what is possible when you just start. And that turned out to be true: new ideas came naturally. That is how the Woman & Parkinson Event came into being, and as if that wasn't enough, I organised my very first webinar together with ambassador Els Haring. I enjoyed it so much! It gives me so much energy and satisfaction.
Why am I doing
this?
Because it is simply great to do! Of course also for you, my reader, who enjoys the magazine. But especially for all those people who share their personal stories with me. What an honor to be able to cast those stories in a beautiful form. And the reactions I receive are heartwarming! That makes everything so valuable.
Plans for 2025
The Woman & Parkinson Event is coming up again! Recreation park De Dikkenberg has already opened its doors for us and is confident that it will be a success again. On Friday May 23, 2025 it will be time: a day to meet each other, connect and share valuable information. We will have great conversations and of course I hope that all women will go home shining!
Enjoy the holidays. Make it cozy, however you celebrate. Put on a nice movie, get some treats in the house, and enjoy being together. Are you alone? Then you can also make it cozy for yourself or invite someone. Go out or plan a nice day or evening together.
The next magazine will be published at the end of March, when spring is already in sight. I look forward to catching the first sun. Always a nice prospect!
I wish you a lot of reading pleasure!
Happyholidays
and a beautiful
Leave a comment about the magazine here.
BOOK!
My new book, 'Val Dood!’ (Drop Dead!), will be released on Saturday, December 21st.
The title has caused a lot of reactions: words like tough, exciting, cool and intriguing were often mentioned, but sometimes someone found the title too intense. Still, for me it is the only title that really fits this story. Just like the cover—it had to be exactly like that.
In Fall Dead! I tell the story through the eyes of six different characters. Each chapter follows one of them, so that the story unfolds bit by bit. The writing style is accessible, and the reader is increasingly drawn into the story. The choice for multiple main characters did receive some criticism in advance. Some said that six main characters was "not done" and that readers would not be able to follow that. But I do not underestimate my readers. On the contrary: I am convinced that they will be able to follow the story just fine and will even enjoy the layering that this approach offers.
By telling the story from multiple perspectives, you can better understand the motivations and development of all the characters. You gain insight into their motivations and see how their personal stories influence each other. Moreover, it is great to let different types speak and thus bring more depth to the story.
The story revolves around two sisters, Lynn and Roos, who share a horrific secret about an event from their childhood. That secret has deeply marked their lives. When Lynn is about to get married, she wants to finally face the past and reveal the secret in order to start her future with a clean slate. Roos, on the other hand, is determined: some secrets must remain buried. But who is right? Do secrets always have to come to light? How well do you really know your family and friends? And can you trust them? As events unfold, each character heads for an unexpected ending.
The book can now be ordered from every (online) bookstore and costs €19.50. ISBN: 978-94-6511-332-6 (only in Dutch)
On Saturday, December 21, 2024, I will be present from 2:00 PM to 5:00 PM in the Readshop in Naaldwijk (NL - Wilhelminaplein 11) to sign books or provide a personal message.
Column Wendy
Balance and Positivity
Seven and a half years ago I was diagnosed with Parkinson's. There I was, with 2 young daughters of 9 and 10 years old. At that moment I felt very sad, didn't know what to expect and how things would go for me. But now, years later, I see it differently. Yes, I have Parkinson's, but I see it as something that dangles behind me and I leave it hanging there. I just do my thing and as long as I can, I can.
I now know that it is important to stay balanced and focus on what feels good. The biggest insight I have gained over the years is how important it is to really listen to your body. Instead of fighting symptoms, I look at what my body is trying to tell me; not just about what is wrong, but also about what is going well.
This is how I discovered that my tremors sometimes disappear on their own, without medication. Where I used to faithfully take my medication at fixed times, I noticed that my body asked for medication that it did not really need. There were times when my tremors disappeared on their own, without me having taken anything. By only taking medication when I really needed it, I felt the difference and was able to reduce my medication. And it also varies what medication I take per day. This has given me more control and confidence in my body.
When I say I use less medication, you often get the question: Are you very active? Do you exercise a lot? The answer is surprisingly no. Exercise certainly plays a role in my daily life, but in a way that suits me.
When I broke my ankle last year, sports were temporarily not possible. Yet I did not deteriorate. Now I move more again, but at my own pace. A walk combined with fitness and experience what feels good for me. By staying in motion, it gives me more energy and I feel better, both physically and mentally. What perhaps helps me the most is my passion. Working on mymagazine and organizing the Woman and Parkinson Event, the conversations I have, and the connection I get from this, give me energy. The reactions I get from people with Parkinson's, companies and people I have a connection with both at home and abroad are so beautiful. That gives me strength and energy. It helps me focus on what I can still do.
What I also find special is what this passion has done to me. By doing something that makes my heart beat faster, I notice that I feel better and can still do so much. When I get up in the morning, I think about the fun things I am going to do that day. I don't think about my Parkinson's. If I suffer from tremors, I take medication and otherwise I postpone it for a while. I don't pay much attention to that. It's about the things I do, that make me me.
What I have learned is that happiness and balance are not in big changes, but in small steps. A sunny day, an inspiring conversation, a quick lunch with a friend, a walk, or just working on my magazine can make a world of difference. When I started changing my approach, I started small. Skipping medication once to see what happened, or taking the stairs instead of the elevator once. Those small choices grew into a lifestyle that now feels natural. And because of this lifestyle, I am happier in life.
Colum Wendy
It's about WHAT YOU WANT. Feel free to say no, it depends on what of course. I eagerly take on the fun things and the less fun things, feel free to say no for now. Do the things that give you something. It's okay to say no to things that cost you energy, and yes to what makes you happy. I'm often up for doing something nice or my magazine has to come out that week and that I really don't have time, but otherwise yes nice!
It is so important to do the things that mean so much. Discover yourself, look at who you are and who you want to be. Especially with parkinson this has become even more important.
If I want to give you one thing, it is this: keep listening to yourself. How it goes is unique for everyone and what works for one, does not necessarily have to work for you. But you can always see if you can get more balance and positivity in your life by trying small steps.
The things I started doing and staying positive in life gives me a lot. It makes me feel better and happy with the life I have. Start today with something small that makes you happy. A positive change doesn’t have to be a big leap – it starts with one step. You decide which one.
WEBINAR Wendy's Parkinson Journey
Hosts: Wendy van Wijk & Els Haring
Guests: ProPark
In this video we have guests Prof. Em. Bob van Hilten and project coordinator Sabrina Chettouf. They provide extensive information about the ProPark research, point us to the newsletter (Newsletter ProPark 2024 – second edition - Profiling of Parkinson (proparkinson.nl)) and the symposium for propark participants that will take place for the 2nd time next year. Due to the various questions asked, it has become a broadly informative webinar. The webinar was set up by Wendy's Parkinson Journey and hosted by Wendy van Wijk and Els Haring. The webinar is in Dutch language.
Click on the video to watch the webinar.
OrderHERE
Frank Schopman, author by experience
Frank: “Early October 2023, I was sitting at the kitchen table and thought: Why don’t I write a book?
Two hours later, I grabbed my laptop and started writing. Every evening, I was in a flow for 2 to 3 hours. It was finished by the end of November. Then fellow readers advised adding two more chapters and I asked six (para)medics to contribute.”
InterviewwithFrank Schopman
“Become an expert on your own disease.”
These are the words of Bas Bloem that inspired Frank.
Publisher Herman Dijenborgh of Abessijn
Publishing House was impressed:
“I have read the first seven chapters. Smooth writing style. Light, while the subjects are sometimes not at all. Then everything seems discussable… ” was the verdict. In the meantime, several hundred copies have been sold and Frank’s story, interspersed with beautiful anecdotes, proves to be a valuable source of recognition and inspiration. “Reactions from readers to my book, I really love that.”
Introduction by Teus van Laar
“Frank Schopman leaves no domain of life undiscussed and describes very precisely how Parkinson's gradually influences his life more and more. About how he can do his job as a valued Dutch teacher less and less well, until he has to quit. (..) Chapter after chapter, Frank describes his experiences in a very personal style, but also his fear for the future.
The focus here is not on what Parkinson's does to you, although he is completely clear about this, but on what you do with Parkinson's? What opportunities and possibilities are there? If you are refused a Weimaraner hunting dog because you have Parkinson's, then you simply choose an Irish Setter! That fighting spirit, the attempt to give meaning and purpose to every day, is a beautiful common thread through this intimate life story. It becomes clear that the people around you are of the greatest value. Together you are strong. That is why we continue to work together to improve the quality of life for everyone with Parkinson's disease. (..)
Highly recommended.” Prof. Dr. Teus van Laar Neurologist/clinical pharmacologist, UMCG Medical Director Punt voor Parkinson Groningen
InterviewwithFrank Schopman
Who is Frank Schopman?
Frank was born and raised in Amsterdam. He spent years cycling past a house in Almere that captured his interest, and now he resides there with his girlfriend, Esther, and her two children.
His career path has been far from linear. At the age of 24, he embarked on a teacher training program in Dutch. Following the propaedeutic phase, he transitioned to the School of Journalism and later focused on political news at the Binnenhof in The Hague, working for Prime Ministers Lubbers and Kok.
One day, after receiving an inheritance, Frank decided to leave his job and explore the Mediterranean by yacht, travel in a camper, and ultimately establish a copywriting agency. Frank shared, “I actually did something similar to what you are doing now – creating a customer magazine.” When asked about his thoughts on "Wendy's Parkinson Journey," he replied, “It is well written, featuring compelling human interest stories, including the article about Wilma van de Berg's research at Amsterdam UMC. Personally, I would suggest a slightly calmer layout, but that’s just a matter of taste.”
In his book, Frank recounts his journey of searching for work again after his adventures and how he found his way back into the world of education in a unique manner.
Diagnose parkinson
"It started with a shaking leg and exams that I couldn't grade properly," he says. "I was taking three times as long and my handwriting became so fiddly that students couldn't read my own corrections."
Although he himself suspected what was wrong, the official diagnosis naturally still came as a shock. Parkinson's disease runs in his family. As a result, the disease was familiar to him. Nevertheless, his work as a Dutch teacher became increasingly difficult. He forgot a lot and could not switch from explaining the theory to taking turns in naming students.
Frank: "During the autumn break, I went to a substitute GP because I was suffering from a trembling leg and I suspected it was Parkinson's. She could not find a medical explanation, but when I later also developed a stiff hand, my own GP referred me to a neurologist. I told my stepchildren that there was a possibility that I had Parkinson's, the same disease as my mother and brother." "I had a brain scan done by the neurologist, and it showed that I have Parkinson's. I was relieved that it was not parkinsonism. The tremor in my leg, among other things, made the diagnosis clear. At school, I shared my diagnosis with both colleagues and students, which led to emotional reactions.
Fortunately, the students were understanding and concerned. I soon noticed that multitasking became increasingly difficult. When students were talking to each other at the back of the class, I would get so distracted that I would lose track. Where I used to be able to restore order with a joke, every little disruption now felt overwhelming. Teaching itself also became more difficult. After five minutes of theory, I was already exhausted and let the students work independently, something I normally preferred not to do so early in the lesson. I also became slower; while other teachers had already started their lessons, I was still busy opening the door to the classroom.”
“During breaks, I avoided the staffroom because it was too busy and noisy. I used to enjoy the company of colleagues, but now I preferred to work alone in my classroom. Sometimes colleagues would come and pick me up, but I always found excuses not to go with them. Supervising the classroom also became more difficult. Before, I always chatted with students, but now I stood quietly in a corner and hoped that no one would talk to me. It was hard for me to address students when they left their rubbish. I was no longer myself and my colleagues started to notice that too. It became increasingly difficult to explain and I was no longer able to prepare my lessons as well as before.”
InterviewwithFrank Schopman
Sports with Parkinson's
“Because of my cognitive complaints, I started looking for blogs from others with similar experiences. To my surprise, I discovered that some people with Parkinson’s are very active, for example by spinning four times a week and doing yoga regularly. My mother also had Parkinson’s and spent most of her last fifteen years on the couch, struggling with depression. How was it possible that others with the same diagnosis remained so active?” “My interest was piqued, and I started watching ParkinsonTV. There I heard the story of Teus, who spent the first four years after his diagnosis mostly sitting still. One day, however, he decided to play outside with his children and felt better. After four years of playing outside, he started running and later on he walked fifty kilometers. In the years that he was inactive, he needed more and more medication. By exercising, his medication requirement decreased. Exercising increased his heart rate, gave him a boost of endorphins and even seemed to partially compensate for the dopamine deficiency. His story motivated me enormously to keep moving myself.” “Even before my diagnosis, I did strength training because of back problems caused by my stooped posture. I also ran. Later I also started mountain biking, often on the Veluwe, and I did strength training five to six times a week with different schedules, on the advice of a personal trainer. When my girlfriend suggested getting a dog, I agreed after a few months.”
“My girlfriend was thinking about a lap dog and I was thinking about a hunting dog. In the end we chose a Red and White Irish Setter, Amy. By taking her for two long walks a day, I automatically keep moving.”
Medication and exercise
“I’ve always been stubborn when it comes to medication. For years, I took a low dose of Sinemet three times a day, while I felt that my exercise was acting as a kind of ‘extra medicine.’ By running, strength training and mountain biking, I felt that I was becoming less dependent on medication. Looking back, I suspect that I may have been undertreated and would have been better off with a higher dose. My girlfriend notices immediately when I slow down, and I notice that sports that increase my heart rate – such as running and cycling – do a lot for me. Strength training has also helped me enormously to improve my posture.”
“Sports gave me a lot of energy, but at one point I suffered a hip injury, which made running and mountain biking too painful. As a result, I had to stop competitive sailing, mountain biking and running for the past 3.5 years. I still cycle, but at a leisurely pace, without putting in too much force. Unfortunately, nothing really brings relief for my hip, not even injections. I now have a spinning bike at home and cycle indoors regularly. In addition, I do strength training three times a week, stretching exercises once a week, and boxing twice a week. In 2018, I helped set up Parkinson's boxing in Almere and this group has about 18 boxers."
InterviewwithFrank Schopman
Volunteer work
“In addition to sports, I am active as a speaker. I give lectures in hospitals and care centers, where I share my experiences about living with Parkinson's. In Parkinson Cafés and ParkinsonNet meetings, I give presentations about the book by Bas Bloem and Jorrit Hoff 'The Parkinson Pandemic'. I also give lectures about renewing a driver's license for Parkinson's and I give presentations about boxing. As chairman of the Parkinson Café in Almere, I invite healthcare providers for presentations and ask people who give workshops, such as painting, singing and dancing. These activities give me a lot of satisfaction because of the contacts I make.”
Writing a book
“After seven weeks, the story I wanted to tell about nine years of Parkinson's was almost finished. My neurologist answered 39 questions about medical aspects. I really appreciated this. The inside flap of the book lists all the healthcare professionals who contributed: from professor Teus van Laar, who wrote the introduction, to rehabilitation physician Susan Meuleman, who solved my walking problems.” “Other healthcare professionals are three physiotherapists. My personal trainer and physiotherapist Guy van der Meulen draws up training schedules for me, physiotherapist Janneke Loo-Muntendam treats my pain complaints, and ParkinsonNet physiotherapist Joanne Derksen teaches me stretching and core strengthening exercises and provides group lessons.” “The first reader was my stepdaughter, who thought it was important that my story started before my diagnosis. Then they get to know you better, she said, and they empathize with you. The book now starts from when I was four years old. In chapter 41, I share my thoughts about dementia.
I once thought that I would want euthanasia if I got dementia, but my volunteer work and my knowledge of Parkinson's have increasingly pushed that thought into the background." At Abessijn publishers you can order: - Living with Parkinson's, by Frank Schopman. CLICK HERE TO ORDER THE BOOK.
Living with nightmares and hallucinations
“In addition to motor complaints, I experience hallucinations and nightmares as one of the most severe symptoms. These life-threatening nightmares occur at night due to my REM sleep behavior disorder, which sometimes makes me lash out wildly. Because of this restlessness - in which I yap, bark, scream or yell - my girlfriend and I have been sleeping separately for five years. It remains a loss, because sleeping together was always so natural.” “During hallucinations and nightmares I often see strange things, such as large rats walking behind my pillow or an eagle on the cupboard. It can swoop down at any moment to rip my face open with its claws or peck my eyes out with its curved beak. Recently I was in a fight with a James Bond-like figure. It was him or me. I threw the stainless steel waste bin that was next to my bed at him with all my strength. The waste bin went straight through him and damaged the plasterwork on the bedroom wall.” “To reassure myself, I have a light next to my bed. When I have a hallucination, I turn the light on and after twenty seconds the image disappears. When we go on holiday, we book two-bedroom accommodation so my girlfriend can sleep undisturbed. Sometimes we sleep together, but only if she doesn’t have to work the next day.”
Gratitude and Adaptation
“I am especially grateful that I can still walk. That is important for my dog Amy, and for myself too. After some searching, I have now found the right orthosis; at first I had one that felt like a block on my leg, but this one helps me walk normally again. I actually owe it all to Amy: for her I really wanted to find out everything, even when I briefly considered buying a mobility scooter. But in the end I prefer to take my bike and take her to the forest, because that keeps me moving.”
InterviewwithFrank Schopman
“My hip injury forced me to stop sailing, mountain biking and running, but I now fill that time with volunteer work. Where I used to exercise six days a week, I now spend more energy on organizing activities and giving lectures about Parkinson’s. I also notice that the dynamics with my partner, Esther, are slowly changing, especially in who takes the lead. For example, sometimes I forget something in the household, even if I see that something needs to be done. When Esther reminds me, I do it right away – before I forget again ;-). Our planning board, an idea of hers, helps enormously. I often look at it so I don’t forget appointments and tasks.”
“Where I used to be out every weekend, to a museum, the beach, the forest, or visiting friends, my life has now become a bit quieter and I spend more time at home. I like that smaller horizon; it gives me a sense of calm. My symptoms are still manageable at the moment and I can live well with them. For the time being, I am not yet dependent on others. As soon as that is the case, we will enter a new phase and we will see opportunities.
Of course there are times when you encounter limitations, such as the loss of a skill or hobby, but new opportunities also arise.”
Wendy: “Thanks Frank for your open interview and nice to have met you. Good luck with your book and the other things you do!”
Make a difference: advertise in Wendy's Parkinson Journey! Reach an involved target group of people with Parkinson's, their loved ones and healthcare professionals. With your advertisement you not only support our magazine, but you also contribute to awareness. Want to know more? CLICK HERE!
A STIMULUS-FRIENDLY DECEMBER MONTH
By Monique Thoonsen
For many people with Parkinson's, the perception of sensory stimuli has changed. Where once a festive December full of coziness and liveliness was experienced, the many stimuli - such as bright Christmas lights, loud music, and smells of food and candles - can now be overwhelming. This overstimulation can lead to fatigue, irritability, headaches or even the feeling that sounds are louder and more intrusive.
However, most people, despite their sensitivity to stimuli, do not want to completely forgo the holidays. The coziness and togetherness remain important moments to enjoy. Fortunately, there are many practical tips that can help to find the balance between celebrating the holidays and preventing overstimulation. Below we share not only advice, but also funny and recognizable anecdotes from people who have found their own way in the festive hustle and bustle.
1. KNOW YOUR OWN SIGNS OF OVERSTIMULATION
It is important to recognize the signals from your body. These early signals can help to intervene in time before the stimuli become too much.
A woman with Parkinson's laughed about how her husband had developed his own 'overstimulation radar': "He's always watching my eyes. When they start blinking more and more slowly and I start yawning without him noticing, he knows it's time to go home. I call him my personal Christmas guide!"
2. GET HELP FROM FAMILY AND FRIENDS
Overstimulation can be subtle, and sometimes others notice it faster than you do. One man told how his grandchild turned out to be an unexpectedly good sensory monitor:
The Parkinson's Symptoms Handbook, written by M. Thoonsen, provides advice.
ENJOYMENT WITHOUT OVERSTIMULATION FOR PEOPLE
WITH PARKINSON'S
Parkinson's Symptoms Handbook
"At a Christmas party, my grandson came up to me and said, 'Grandpa, you look like you want to go to bed. Do you want me to help you?' He was right. We sat down together in a quiet corner for a while, and that gave me the energy to enjoy it again."
3. PLAN ACTIVITIES FOR YOUR BEST MOMENTS
Many people find that they have the most energy in the morning and early afternoon. One woman admitted that she had completely changed her Christmas tradition:
"It used to be an extensive dinner in the evening, but now we have a nice Christmas brunch. I feel fresher and happier, and the whole family enjoys it more. By the evening I'm already snuggled under a blanket."
4. DISCUSS THE PLANNING IN ADVANCE
A clear schedule helps to avoid chaos and busyness. For example, one man told me that he has been drawing up a strict schedule for years before Christmas:
"I stick the Christmas schedule on the fridge. Everyone knows exactly when I have scheduled my rest moments. My children laugh about it, but it works! This way I can get through the holidays without stress."
5. CHOOSE SMALLER GROUPS
Large groups can be overwhelming. One woman shared a beautiful memory:
View the sample copy by clicking here.
A STIMULUS-FRIENDLY DECEMBER MONTH
By Monique Thoonsen
"One year, during a busy Christmas dinner, I suddenly found myself alone in the kitchen, trying to recover. My sister-in-law came to find me and stayed with me. We ended the evening there with just the two of us, chatting and eating cookies. That unexpected peace made it perhaps the best Christmas ever."
6. CREATE A RETREAT
It is useful to have a quiet place where you can retreat for a while. One woman had a creative solution for this:
"I have a 'destimulation chair' in the hallway. Everyone knows that when I sit there, I need my moment. Even the grandchildren now know that grandma doesn't want to be disturbed, and that works surprisingly well."
7. LIMIT THE NUMBER OF CALLS
When you’re in a crowded space, it can be hard to keep up with multiple conversations at once. One man shared how he solved this:
Background music can be fun, but if you want to have a conversation at the same time, it can also be distracting. One woman shared how she subtly solves this:
The Parkinson's Symptoms Handbook, written by M. Thoonsen, provides advice.
ENJOYMENT WITHOUT
OVERSTIMULATION FOR PEOPLE WITH PARKINSON'S
Parkinson's Symptoms Handbook
"During Christmas dinner I once asked if the music could be turned off. When my husband said he hadn't even noticed, I realized that it was only me who was bothered by it. Now they always ask during dinner if the music could be turned down a bit for me."
9. INDICATE WHEN YOU WANT TO BE A 'SPECTATOR' FOR A WHILE
Sometimes you want to be present, but not actively participate in the conversations. One woman came up with a creative way to make this clear:
"When I put my pillow on my lap at a party, my kids know I want some peace and quiet and don't want to talk. They now jokingly call it my 'Christmas pillow' signal', but it works perfectly."
10. TAKE A QUIET WALK
A short walk can do wonders when it gets too crowded inside. One man told how he keeps the same tradition going every year:
"On Christmas Day I always take a walk with my dog, just through the neighborhood. It's our way of finding some silence between all the stimuli. My children know that I'm completely recharged after that walk."
11. ENJOY FOOD WITHOUT DISTRACTION
Eating can be a quiet moment to catch your breath. One woman shared how she discusses this with her family:
View the sample copy by clicking here.
A STIMULUS-FRIENDLY DECEMBER MONTH
By Monique Thoonsen
"We agreed not to talk during the main course, so that we could really enjoy the food. Everyone loves to eat in silence for a while, and it creates a relaxed atmosphere at the table."
12. LIMIT GREETINGS
Greeting everyone personally can take a lot of energy. One man shared how he cleverly solved this:
"Instead of greeting everyone individually, I now just shout 'Hi everyone!' when I come in. It saves me energy and everyone knows I'm there. It works perfectly."
13. LET OTHERS SAY GOODBYE FOR YOU
If you are overstimulated and have no energy left to say goodbye, you can leave it to someone else. One woman told how her husband had handled this in a light-hearted way:
"Once when I sneaked off to bed during a busy family party, my husband said with a wink: 'The Christmas fairy has already gone to dreamland!' Now it's become a joke and my children say goodbye for me when it's too much for me is becoming."
14. MAKE SURE YOU DON'T HAVE TO DRIVE
Driving can be extra tiring after a long day full of stimuli. One man told me he had handled this cleverly:
The Parkinson's Symptoms Handbook, written by M. Thoonsen, provides advice.
ENJOYMENT WITHOUT OVERSTIMULATION FOR PEOPLE WITH PARKINSON'S Parkinson's
Symptoms Handbook
"My son is now my regular driver during the holidays. He loves driving me, and I can stay until I'm really 'done' without worrying about the ride home."
15. CHARGE BETWEEN HOLIDAYS
In the days between Christmas and New Year, it is important to get enough rest. One woman had found her own way to recharge: "
After every holiday, I take the next day as my 'recovery day'. That means lots of walking, listening to relaxing music, and reading a book under a blanket. That way I stay balanced and can really enjoy the holidays."
FESTIVE ENJOYMENT WITHOUT OVERSTIMULATION
The holidays are often full of warmth, joy and togetherness, but for people with Parkinson's they can also be exhausting. However, with smart adjustments and a touch of humor, it is possible to spend the month of December in a stimulus-friendly and cozy way. The experiences of others show that, with a little creativity and good agreements, you can enjoy all the festive moments without being overwhelmed by the stimuli.
Merry Christmas!
View the sample copy by clicking here.
I N T E R V I E W
Frank
Roos:
“I enjoy life!”
Frank Roos (51 years old) is someone whodespite being diagnosed with Parkinson's at the age of 29 - enjoys life to the fullest. When he was diagnosed, his second child was on the way, he had just gotten married, had completed his Master's degree, and had a great career ahead of him. However, his career came under pressure, and eventually he had to stop working at the age of 42. "That was the start of my new phase as a full-time life-enjoyer," he says, "although it is becoming increasingly difficult to be a life-enjoyer every day."
Interview with Frank Roos
Wendy: “On a bright morning I drive towards North Holland to meet Frank Roos.”
Frank was diagnosed with Parkinson's when he was 29. When he was young, he used to cut lilies, and about fifteen years later the disease began to manifest itself. Pesticides are used extensively in lily cultivation. Fifteen years ago, it was not yet known how harmful these substances could be. At that time, Frank worked in the fields, cutting lilies in the middle of summer. While he worked up a sweat, the tractor passed by to spray the crops with pesticides. "In the summer heat, I would take off my shirt to cool down while the tractor drove by with pesticides," he says. "Then you would walk into the spray, which felt refreshing right away, but now I wish I had known then what that exposure could mean for my health." He has now been living with a Parkinson's diagnosis for 22 years.
Wendy: “On social media I recently asked if people recognized Frank. He showed me a video, and I knew right away: Oh yes! That's the young man who told on TV at the Hofbar about his work in the lily fields and how he worked under the spray of pesticides on the land, because it was so refreshing. Indeed, that's Frank.”
Who is Frank Roos
Frank Roos is now 51 years old and lives with his wife Patricia in Zwaag (NH). Their children, Tim (20) and Jennifer (22), and their granddaughter of just 1 year old complete the family. “Being a grandfather is so wonderful. I enjoy it to the fullest.” Frank: “I was born and raised in Hoorn and later ‘emigrated’ to Zwaag, a village near Hoorn. I like it here so much, so why would you move anywhere else.”
After his education at the MTS, Frank continued working at his internship company. That way he could pursue two hobbies: earning money and studying. After completing various HBO modules, he started his ‘Master in ICT Management’. Going to school on Fridays and Saturdays, and in English, so quite tough. “When registering for the master’s degree, it was not for nothing that they asked: ‘What were your hobbies?’ I said: ‘Were?’ ‘Yes, you certainly don’t think you still have time to have hobbies now? “ “It was indeed hard work, but as long as you really want something, it is possible. As long as you have ambition, and I did!”
Interview with Frank Roos
“Am I going to die from this?”
Frank: “My hand started shaking during a game when moving a pawn. Someone joked: You must be excited?” In retrospect, this turned out to be the first indication of what would later turn out to be Parkinson's, although Frank had no idea of that at the time.
Without thinking much of it, he went to the family doctor, who - which was unusual for that time - immediately thought of Parkinson's and sent Frank to the neurologist. After an MRI scan and a DAT scan it was clear.
Frank: “When I heard the diagnosis, it was a huge shock. The neurologist at the AMC said: ‘Write down all the questions you have and come back next week’. I didn’t want to search the entire internet right away, because I wouldn’t find anything there. I didn’t want to see the worst-case scenario right away.” Frank asked the neurologist worriedly: “Are you going to die from this?” The doctor explained that Parkinson’s is not fatal, but it does ‘seriously limit the joy of life’. It wasn’t until some time later that I understood the impact of that statement. It was quite special to hear this, but Frank decided not to give up. “We’re pretty down-to-earth here, so we thought we’d see how it went.”
Medication
At that time, there was still much unknown about medicines like levodopa/carbidopa. People thought that after 10 to 12 years of using this, it could actually damage your health. *
The LEAP study, funded by the Parkinson Fund Foundation, has now shown that starting levodopa early does not cause any damage in the long term.
Frank decided in consultation with the neurologist to postpone the medication at first, for fear of becoming dependent too quickly. When his tremor got worse, he tried Azilect, which might have an inhibitory effect, although this medication was not reimbursed. However, research later showed that this inhibitory effect was not there, which disappointed Frank. "I was young and I really didn't want to end up in a wheelchair in 12 to 15 years," he says. And he succeeded. More than two decades after his diagnosis, he keeps moving by playing sports twice a week, cycling and walking.
A Career Under Pressure
“My work meant a lot to me, it gave me satisfaction and challenge. I worked at a large company with 4,000 employees and two locations. My job required me to travel regularly to Heerlen, our other location, by train, 3 hours there and 3 hours back. That was tough, but I persevered.”
Until the travel and the stress he experienced during the interviews began to take its toll. After consulting with his manager, he transferred to a position in contract management (purchasing), where he could manage his time betterand that actually went very well. “I was able to continue working longer, and that was very valuable to me. Eventually I stopped at 42, after 23 years of service.”
It was a major step for someone who had always been fully committed for his work. Yet Frank managed to be positive again. “You always think that you are indispensable, but the company continues," says Frank.
A Family That Cherishes Togetherness Interview with Frank Roos
In the year 2000 Frank and Patricia got married in Hoorn. Their love for adventure and travel led them straight to the vast roads of America, where they made a great journey of no less than 7,000 kilometers through four states of the USA. This three and a half week trip gave them a unforgettable experience.
Next year it will be 25 years since they said 'I do' to each other. This milestone they are going to come up with something nice. Plans for a new journey are in the making. Where to is still a surprise for them too.
“Everything must be celebrated, so certainly our 25th wedding anniversary, even though it is still a surprise where we are going. But that we are going to do something fun is a fact.”
Frank is the one who finds out everything on the internet about where they will go on vacation.
“We’re going shopping again and of course enjoying the holiday. I’ll take my hat with me against the warm sun.” In recent years, Frank and Patricia have explored the United States and Canada several times and discovered many beautiful places. Travelling and cars are more than a hobby for Frank; they are ways to celebrate life. "That’s how I bought my dream car, an Audi, in the bright blue colour that I like so much. For a car lover like me, that is pure enjoyment. Patricia and I like to go out together." Frank is a real car lover and is therefore always ready in front of the TV when the Formula 1 starts.
Everyone with Parkinson's has their own story
Every Parkinson's diagnosis is unique, with its own path full of challenges and insights. Frank knows all about this. Frank always looks for the bright spots and has also taught his children to deal openly with his illness. For his children it is a given; they do not know any better.
Interview with Frank Roos
"Our children have always been used to the fact that I have Parkinson's," says Frank. "When friends came over, the children explained it very simply: 'My father has Parkinson's, which is why he sometimes shakes a little and speaks softly.'"
“It was never something for them to be ashamed of or to make a big deal about.” That relaxed attitude works. Children learn to be understanding and open, and that has a positive effect on how others treat Frank and his family. “Because our children talk about it so normally, it is also normal for their friends. No one thinks it strange if, for example, my hands are a bit shaky or I sometimes shuffle through the street. That makes it a lot easier for me, but also for my family.” Frank’s positive attitude is characteristic of his approach to the disease.
Although Parkinson's comes with uncertainty and difficult moments, he always keeps looking for what he can do. "I have noticed that my positive outlook helps others too. My family has never really had to feel different. We are just a normal family – with a little extra challenge here and there.” Everyone with Parkinson’s carries their own story, but Frank shows that even within the limitations of the disease, you can choose an approach that makes your life a lot easier. “It is what it is,” he says, “but we make the best of it.”
“During the time of Corona, things were getting worse and worse for me. Every day I struggled with painful cramps, my energy was low and I took piles of medication. When my old employer gave a tour of their new building, I had to sit in a wheelchair, that was tough. Walking long distances was no longer possible, I carefully moved forward, while I eagerly looked forward to the Deep Brain Stimulation (DBS) operation. Unfortunately, my patience was severely tested by all the delays due to Corona.”
“On my 49th birthday, July 21, 2022, the moment finally arrived. That day I underwent the brain surgery to implant the DBS. It was a birthday to remember, and a lot has changed since then.”
“On the way back home after setting the DBS I was really struggling with uncontrolled movements. But when we set the DBS to 80% with the remote control I felt an immediate relief – the difference was immediately noticeable. It’s nice that I can now just adjust these settings at home. In the past, you always had to go to the hospital for that.” After about eight months, the DBS was set up and fine-tuned. “The DBS has also significantly reduced my medication use; I am now at about 40% of what I needed before. The DBS itself is now running at about half its capacity, which means there is room for further adjustment and improvement.
Parkinson's disease remains progressive, of course, so the symptoms are getting a little worse each time.” “What I notice most is that my daily cramps have completely disappeared since the operation – and I can tell you, that alone is a party! In addition, I can play table tennis twice a week again, my facial expressions have improved, and people understand me better. Even cycling is no problem again.”
“After a year, we briefly switched off the DBS for the first time, to test whether everything was set correctly. The memories of the time before the DBS came flooding back, but fortunately everything was fine. The DBS really does a lot for me. I have now been referred to my neurologist at the Dijklander Hospital, and next year my annual MOT is scheduled at the AMC.”
“In short, the DBS has changed my life. No more wheelchair, no more cramps and above all – more enjoyment of everything I can do again.” “I hesitated for a long time about the DBS operation, but in retrospect it turned out to be a blessing for me. What also helped me enormously was that the procedure was performed under anesthesia.” “It is an experience in itself to live with a DBS. For example, I recently went on a trip via Schiphol. When flying, the only thing you have to watch out for is that you cannot go through the metal detectors. Just show your pass, which you receive after the DBS is placed, at security.”
Interview with Frank Roos
"Every moment you can celebrate, you should celebrate. Life is a gift, and we try to make it special every day."
Enjoy Every Day
Frank is not someone who gives up. “Parkinson’s doesn’t mean life is over,” he says. “My paid career is over, but I am a full-time life-enjoyer. For example, I now do volunteer work and am on the board of the table tennis club. And because I am often at home, I can help the children with all sorts of things.”
A Call for Understanding and Openness
Frank chooses to be open about his diagnosis and experiences. "Many people know about the disease, but don't always know what it really means. I talk about it to create understanding, not to gain pity." Sharing his story helps others, Frank notices. "It is important to me that people understand why I make certain choices or approach things differently. By being open, I also help others find their way. It is my way of staying true to myself." His message to others is simple but powerful: keep following your own path, and don't be tempted to overachieve.
"Everyone has their own pace and their own carrying capacity. Look at what feels good for you and stay close to yourself. You may not have control over your life, but you can choose how you deal with it.”
In addition to his own openness, he has committed himself to helping fellow sufferers through work-group “Parkinson and Work.” His advice focused on financial security and work arrangements for people with increasing complaints. “Take good care of yourself and your financial situation. Do not simply adjust your employment contract, because that can have consequences for your benefits and your pension,” he warns.
Thanks to his experience with Parkinson and work, Frank has been committed to the Parkinson Association for many years. “I have been active in the Parkinson and Work Working Group for 4 years and now for the PK-PAR (Patient Chamber Parkinson Advisory Board) for 4 years, to which I want to contribute with my own knowledge and experiences. It is satisfying to support others. Good help and information can really make a difference, I have experienced that myself."
Wendy's Parkinson Journey
On World Parkinson's Day, Frank wrote me this message: "What a beautiful magazine! I can imagine that you are proud of the product you have made. I can also imagine that something like this takes a lot of time, but also provides a lot of recognition for other people with Parkinson's." Frank: "After reading the article by Paul van Wijnen in your magazine, I was deeply touched by it. A really beautiful positive piece. And then I also wanted to share my own story." His wife Patricia confirmed that: "You really make a very beautiful magazine."
Interview with Frank Roos
Frank: "I am a life-enjoyer. Life can be celebrated, and we celebrate it as often as possible. Every positive moment you have, you should cherish and appreciate. That is what I want to convey to everyone - keep enjoying, realize your dreams, and keep believing in the possibilities."
His wife Patricia adds that she has great admiration for how Frank, time and again, manages to find his positivity again after a difficult period.
Frank's life motto is: "HAVE FUN!"
Wendy: “Frank & Patricia, thank you for the warm welcome and wish you and your family all the best. And in Frank’s words ‘HAVE FUN’!”
Would you like to sponsor this magazine as a company by advertising or supporting the Woman and Parkinson event? Then you can be sure that your message will get the attention of people with Parkinson's. Click quickly on SPONSOR ME.
In conversation with Wim Hofman from De Suite
“A beautiful family business, where they take the time for their customers.”
Interview met Wim Hofman Founder ofThe Suite
In the hospitable showroom of De Suite in Moordrecht, near Gouda, I meet owner Wim Hofman. De Suite has been designing custommade beds for over forty years. Originally aimed at overweight people, the focus is now on beds for people with Parkinson's, a specialization that arose by chance after a comment from a customer. Wim: 'A firmer mattress makes turning over easier, something that people with Parkinson's benefit greatly from.' This specialization has led to growing demand. Every day, clients with Parkinson's from the Netherlands and Belgium visit De Suite for sleep advice. For people who are less mobile, the company also offers home visits, now also in Belgium. Further expansion in Europe is being considered, depending on demand.
Wim emphasizes: ‘You buy a bed for life, and adjustments may be necessary later. We offer this service thanks to our experience and listen carefully to what customers find important. Although the situations of people with Parkinson’s vary greatly, the challenges around sleeping are often similar, such as getting in and out or turning over. With our expertise, we can really make a difference.’
Each bed is custom-made with care, and even after purchase we can make adjustments so that the bed continues to meet the changing needs of the user. Through their years of expertise and special solutions, De Suite has developed into a valuable partner for people with specific sleeping needs – a company that listens, understands and thinks along, and thus makes life just that little bit more pleasant.
How does the high-low bed help people with Parkinson's?
‘The high-low bed makes getting up easier,’ Wim explains. ‘The construction is completely concealed in the casing, so you can’t see that it’s a high-low bed. You can adjust the height exactly to what’s comfortable for you. This not only helps you get up, but also makes making the bed and cleaning underneath easier.’ Wendy notes that these adjustments offer great added value, especially for people with Parkinson’s, who often have difficulty getting up or bending over.
Interview with Wim Hofman
What makes De Suite suitable for people with Parkinson's?
‘Our fitters assemble the bed professionally and take the old bed away for free,’ says Wim. Wendy appreciates the complete service. ‘We also offer customization for mattresses. A firm mattress provides stability when getting in and out, which is important for people with Parkinson’s. It ensures comfort and independence in the long term.’
How do you ensure that both people with Parkinson's and their partners get a suitable bed?
We listen carefully to the needs of both partners and design a bed that is comfortable for everyone. As a couple, you can sleep together in one bed, with two separate beds that are connected to each other. From the outside, you cannot see which bed is whose, which creates unity and convenience."
When you buy a bed, your situation may change later. How do you respond to that?"
Adjustments are always possible, such as a firmer or softer mattress or extra functionalities. Sometimes we plan a home visit to perfectly adjust the bed to the home situation. We remain involved until it is completely to your liking."
What
makes an appointment in the showroom so useful?
Wim: "In the showroom we show various options and discuss the customer's wishes in detail. During an appointment of about 1.5 hours we listen to what is important, not only for the person with Parkinson's but also for their partner. This way we arrive at a solution that works for both."
Interview with Wim Hofman
How do you ensure that the bed fully meets the customer's wishes?"
During the showroom appointment and possibly a home visit, we listen carefully and look at what is needed. The bed is completely custom-made, from the hardness of the mattress to the choice of fabrics and materials. We can even adjust bedside tables with smart solutions, such as extra shelves or other gadgets. We remain involved until everything is just right, even if adjustments are needed later."
What exactly is the FPS mattress and how does it help people with parkinson's?"
The FPS mattress uses low-frequency sound waves and vibrations to promote muscle relaxation. Thanks to the water in our body, an excellent conductor, these waves work very well effective. With programs from 13 to 40 minutes it helps mattress people with Parkinson's, who often have muscle stiffness and restlessness experience, to relax both physically and mentally.
In Parkinson's boxing we often hear about the positive effects. Can an FPS mattress strengthen those effects even further?"
Wim: "Absolutely. The FPS mattress can enhance relaxation and improve recovery after exercise. Many people find that the combination of boxing and the mattress helps them to feel better, even though the Parkinson's remains present.
DID
YOU KNOW?
Start immediately with the FPS mattress to structurally maintain your body. It promotes deep, restorative sleep and helps you roll over and get out of bed more easily. The effect lasts for 3 to 5 days, with extra benefits with regular use. The beds and mattresses are perfectly matched for optimal sleeping comfort, an investment that is immediately noticeable.
Interview with Wim Hofman
"People with Parkinson's often have pain and sleep problems. How can the FPS mattress help with that?"
“Our customers indicate that the FPS mattress reduces the need for painkillers such as tramadol. The mattress promotes muscle relaxation, which helps with pain complaints such as leg cramps due to rigidity. For people with REM sleep behavior disorder, who have to deal with restlessness or nightmares, the FPS system can reduce tension and improve sleep quality. All of this contributes to a better quality of life."
‘We are a real family business, and that makes us distinctive. We know each other well and share the same sense of service, which is a nice feeling for our customers. You notice a completely different mentality than in large organizations. With us, it is more personal, and you can see that in how our customers are helped by our employees. The family feeling is deeply ingrained, with a shared drive and the will to go for it together. That makes it not only special, but also incredibly beautiful.’
Wendy’s Parkinson Journey
Wim: 'I think it's a beautiful magazine and it's written in large letters, which is of course very pleasant for most people with Parkinson's. My compliments. That you're interested in starting it, that's of course wonderful. You'll give a lot of people a great pleasure with this. doing . '
Blog Wendy: “So recognizable to me what Erik Scherder said in his lecture at the Parkinson Boxing Event”
A day with a golden edge
My passion
My own diagnosis makes me want to be of significance to people with Parkinson's. Projects like my magazine, the Woman and Parkinson Event, and even the new plans I'm already working on, stem from that deep desire to do something positive. I recently received a big dose of inspiration from Erik Scherder, professor of neuropsychology, who speaks so passionately about the power of challenges for the brain. "Take on challenges, that's good for your brain," he said. And those words are taken from my heart.
New Ideas
For me it is simple: if I get excited about an idea, then I have to do something with it! My head is full of plans and ideas that keep bubbling up, and I just can't let them lie. Yes, but I keep an eye on the big picture. Plans? They are in my head. I don't write everything down, but I try to imprint everything in my memory and always get the best out of it. Actually, that is also a way to test my brain and keep it sharp. And according to Erik Scherder you have to stimulate that brain, keep challenging it. I do that!
Connection
Erik Scherder gives a clear message: ‘don’t just sit passively on the couch, but go out. Seek out people, do things together, celebrate birthdays, and above all: keep moving!’ At the Woman and Parkinson Event that I organized, all of this came up. Being together and inspiring each other, various workshops and getting some exercise with Parkinson Boxing nL, dancing, yoga, but also workshops with creativity. What I wish for every time, I saw again this day, the women went home shining. It did them good, and the atmosphere was exactly as I had envisioned it: connecting, enjoying, and staying active. Erik Scherder’s words came as a confirmation of everything I already do and radiate. I heard my own positivity and enthusiasm in his lecture, and that felt like recognition. Finally I hear from an expert what I have been saying for so long: stay active, surround yourself with people and keep doing what makes you happy.
Lifestyle
Another important point he made was the importance of lifestyle. For example, he mentioned how lifestyle is getting more and more attention with conditions like MS, and how people benefit from it. For me, that was recognition. I always say that lifestyle and doing things that make you happy can make such a difference. The confirmation from a professional like Erik Scherder that this is the right way, felt great! That is exactly what I stand for. According to Erik Scherder, lifestyle is a crucial factor, and I think exactly the same about that. A healthy lifestyle, staying active, connection and positivity, can mean so much, especially with Parkinson's. An active lifestyle keeps your brain sharper, more resilient, and gives you more energy to do what you like.
Thank you, Erik Scherder!
Erik Scherder, thank you for your inspiring words! It feels like a confirmation to me that the things I do, that that is the right path. Your words have made me even more enthusiastic. And I have started working hard with Squats, about 5 x a week in the gym. Squats, very important. Keep moving as long as possible.
Interview with Wendy van Wijk by Janneke den Ouden
Janneke:
It's early in the morning and I'm on my way to Wendy's. I want to interview her for her own magazine and bombard her with all sorts of questions that will probably come to mind later. Normally Wendy asks the questions but today we ' re going to turn the tables. We already know that Wendy has Parkinson's, makes her magazine with great passion, is passionate about helping to put Parkinson's on the map and doesn't even shy away from organizing an entire event, such as Woman and Parkinson. But who is the woman behind this? I'm going to find out. I'm on a mission, full throttle to Linschoten!
Interview with Wendy van Wijk byJanneke den Ouden
I ring the doorbell and the door swings open immediately. “Come in,” says a broadly smiling Wendy, brightly dressed in orange and purple. Purple is her favorite color.
Wendy lives in a cozy house with her husband Jurgen and daughters Tessa and Anna, aged 18 and 16 respectively, and cat Simba. The latter gives me a pitying look and demonstratively installs herself in the large armchair in the living room.
He's right, it's a beautiful place.
We sit down at the kitchen table, it's easier to talk that way. Before the tea water boils, I know that Wendy was born in Gouda.
'I love that city and I would have preferred to stay there. But my parents got divorced and I wanted to stay with my mother, which is why I ended up in Capelle aan den IJssel at the age of 15. First completed the MAVO in Gouda, followed by the MEAO in Rotterdam.'
When we are both provided with a large cup of tea, the conversation continues. Wendy enjoyed working for Procter & Gamble in Rotterdam. (Procter & Gamble is a multinational with headquarters in Cincinnati; they make and sell consumer products, including A-brand diapers, detergents, facial products, feminine hygiene).
‘’I left the company for the first time in 1997 after my mother passed away and I temporarily took over her tasks at the cleaning company she had started with her husband. Then I worked for a few months via the employment agency (at Unilever) until an old colleague of mine informed me of a new vacancy at P&G and she thought this was perfect for me. And she was right. ‘
‘I was invited for an interview with the manager of the department and the CMO manager. The CMO manager was one of the Belgians who had moved into the office in Rotterdam in the meantime and who I did not know yet. The best job interview I have ever had. During that time we worked with great pleasure on the introduction of brands such as Pringles and Swiffer. Then in 2002 I ended up in sandwiches and treats. I was the lucky one of approximately 100 applicants for the position of marketing assistant at Delifrance Nederland.’
Interview with Wendy van Wijk byJanneke den Ouden
Wendy was diagnosed with Parkinson's in 2017. A diagnosis she did not see coming, despite the strong suspicions of her husband and mother-in-law.
‘I heard the neurologist say that I have Parkinson’s. My husband was with me and a little later we were outside again with some information in my hand. I was especially relieved that it wasn’t cancer, the disease that killed my mother.’
During the entire conversation I was struck by how important her mother was to Wendy and how much she still misses her mother.
'A lot of bad things in my life have the number 7. My mother passed away in 1997. I was diagnosed with Parkinson's in 2017. My mother was 57 when she died.'
But you did get a bad diagnosis. What did you do with it?
'I went looking for what Parkinson's is; I wanted to know what I had. However, I read all kinds of things that I did not want to know and stopped looking for information. There was only one thing that I had really taken to heart and that was that exercise is very important. My neurologist also advised me to exercise for 45 minutes every day.
‘You know… sports and I have never been a good combination. Not a match made in heaven. As a child I did gymnastics for a short while, because my girlfriend was in that club and there was a gymnastics camp. But I stopped after a few lessons.’
‘Because I had to do something (walking, skiing, tennis, swimming, you name it and I don’t feel like it) I decided to go cycling. The thing was that I hadn’t cycled in twenty years. I first practiced with my daughters, then 9 and 10 years old, on a deserted square. It wasn’t too bad, I could still do it!
‘ How did you tell the children about your illness and how are they coping?
‘I told them and explained it to them together with my husband. The youngest gave a presentation about it at school, the oldest didn't talk about it.
They both, like me, do not want to look to the future. I am not afraid either, I do not look far ahead because I cannot change anything anyway. Now it is easy for me to talk because I take very little medication and am not deteriorating quickly. I also have few complaints. Yes, my arm shakes, sometimes more than other times, but I am used to that now.
Interview with Wendy van Wijk byJanneke den Ouden
Was there never a confrontational moment?
'What I found confrontational is that it at job applications there were always questions about Parkinson's. They're not allowed to do that, but they do it anyway. I also once ordered a pizza in Germany and they wanted to cut it for me because I probably couldn't do it myself.' Wendy still looks bewildered at the memory.
Wen, aren't you really afraid of the future?
No, I'm not afraid of the future with parkinson's but I am afraid of turning 57. I am 55 now and my mother was 57 when she died. I would rather go straight from 56 to 58.'
Wendy proudly shows me a few pictures of her mother. A very pretty appearance. Her pride and love touches me. I see Wendy's face in her mother's.
Do you feel nostalgic for the time before your Parkinson's?
‘No, I have taken a new path. I am now doing things that I would not have dared to do otherwise.
I have made beautiful friendships and gained new meaning in my life with my magazine.
It is nice to be able to do something for people with Parkinson's with my magazine and I like talking to people who are going through the same thing. My husband finds it more difficult. He would prefer to put me safely in a glass cabinet but he accepts that that does not work for me.
Time for some more lighthearted questions.
Wendy, who are you spending your last 100 euros on?
‘I’m going to treat myself, so I’m going to buy myself something nice.’
Who would you like to have dinner with?
‘With Michael J. Fox.’
If you win a holiday of your choice, where would you go?
‘Somewhere nice and sunny. Maybe with a book. I like romantic books.’
Do you like Christmas?
‘I like the period before Christmas. The lights and decorations. I don’t have much for Christmas itself. I miss my mother very much then. We’re going to have a gourmet meal and I hope those days will be over soon..’
Have you ever cried over a book?
‘No, not that I remember, but I used to cry when I watched the TV series Lassie.’
What can we wake you up for?
‘For ice cream!’
What can’t you do?
‘Sing.’
What would you like to do?
‘Distribute my magazine worldwide. I would also like to be a famous actress, but only one with roles in a farce. I like to laugh.’
Interview with Wendy van Wijk byJanneke den Ouden
Wendy can certainly do that, laugh happily. The interview is coming to an end. I hear that Wendy likes French fries, Toyota is her car brand, she is interested in politics, she hates arguments and is looking forward to the musical Malle Babbe for which she has obtained tickets. Andrea Bocelli can also come and sing for her!
I'm heading home. One more question for Wendy. What are the plans for 2025?
'I have already booked two weeks holiday to Gran Canaria for the new year. Nice on a lounger in the sun. And of course continue with my magazine, find lots of new sponsors and another new Woman and Parkinson event! But above all, things have to continue going well with my family!’
I say goodbye to a sweet, quick-laughing, passionate woman who can chat wonderfully. With my head full of Wendy's words, I say goodbye. Simba, still stretched out lazily on the chair, looks at me disinterestedly and yawns when I politely say hello to him. Wendy waves me goodbye. She is a beautiful person. I hope that Mr. P. remains gentle with her so that she can continue to make her great passion, her magazine. For herself and for us.
Already the last column of 2024. How the year has flown by. As a child I liked it when the year was finally over. Then I was a bit older and wiser and people might finally listen to what I said or asked.
I didn't believe a lot of things. As a toddler I didn't believe that Sinterklaas's helpers could crawl through that little grate and I also didn't believe that if you looked angry or cross-eyed your face would stay that way when the clock struck. I tried it repeatedly to be sure. My questions often made my mother angry. But how could it be written in the Bible that there were four corners on earth if the earth was round? Why did I have to do stupid housework and my brothers didn't? I was a stubborn little girl waiting to improve the world.
Now, many years later, I find that the years are passing by very quickly. I have long since stopped believing that the world is waiting for what I have to say. I still do not believe a great many things. For example, I do not believe that I have Parkinson's because I do not eat meat. And also not because I am bewitched or that a spirit lives in me. Really, this has been seriously told to me by people who believe this.
You know what else I don't believe? That strange story about Paul McCartney. That he actually died a long time ago in a car accident. In order not to jeopardize the success of the Beatles, they quickly replaced him (on 9/11/1966) with the McCartney of today, who is not the real Paul McCartney. Because the band members did get a bit of remorse, they hid a lot of hints in their songs and the cover of Abbey Road is actually a funeral procession.
A piece of Janneke
Janneke den Ouden (author of Diary of a thriller) has had Parkinson's for years. In Wendy's Parkinson Journey you will always find a column by her.
This by now no longer a little girl headstrong (but now apparently a witch with Parkinson's) wonders where they found someone so quickly who sang just like the real Paul, looked just like him and could fool his entire family, hospital, friends and acquaintances. And who is that look-a-like? Could he just disappear from one day to the next and nobody missed him?
I'm too down-to-earth, that's it. I don't believe that Elvis is still alive or that walking barefoot through the grass cures my cold. I recently read an article suggesting that the days in a year are being tampered with and that there are no longer 365. Now I buy a diary every year with all the days of the year and that way I know that a year has really passed. Pretty clever.
Speaking of smart, let's not start doubting our intelligence as parkies. It is not affected, it just takes longer for the message to get through. So be it. There was even a scientific study in Sweden where they linked the chance of getting Parkinson's disease to a high IQ. In Sweden they investigated this by determining the IQ of 1,619,235 conscripts.
Of this entire group, 1724 developed Parkinson's disease. The outcome of the study was that a high IQ gives a greater risk of Parkinson's.
Another study found that smoking has a positive effect on the prevention of Parkinson's.
Smokers, on the other hand, die an average of 10 years earlier than nonsmokers. Scientific research shows again that people who smoke have a lower IQ than non-smokers. It certainly doesn't make you smarter.
Smart parks
Column
Is that where the expression ‘blessed are the foolish in spirit’ comes from?’ That doesn’t seem so bad to me if you could have prevented Parkinson’s with it. But you’ll never know. Despite all my questions, there’s still a lot I don’t know.
What I do know is that sometimes, because of that nasty Parkinson's, there are moments when it is a bit more difficult to simply be happy. When the disease progresses and despite all your efforts your condition deteriorates.
But we as parkies will do everything to be happy in 2025 (The stubborn girl is still in me) and we will not give up. We will continue.
We leave tension, anger, fear, resentment, sadness behind us, buy a lottery ticket, meet up with our friends, cherish our family. We go to the theatre or watch Pathé at home, are happy with our partner, buy my book(s) ;-) and support each other and make plans. Life is not always fun, there is also pain, sadness and illness. By also acknowledging the negative, we appreciate the positive more. Sustainable happiness. It's almost 2025. I would like to end with a wish for you.
Parkies and partners, I wish you all a long year with beautiful days with a golden edge, a winning lottery ticket, days when things go well, all traffic lights are green, parties, but also occasionally boring days and the ability to put things into perspective for the less pleasant days. Which brings me to an oldfashioned tile saying that I do believe in.
‘Happiness is making a bouquet of flowers that you can reach.’ Until next year!
Janneke den Ouden
This Is Me
I have been writing poetry since my school days. The poems in this book reflect my thoughts and experiences following my diagnosis with Parkinson’s disease in 2007.
Mark Edward Fuller
A poet, living with Parkinson's disease since 2007.
In conversation with Mark Edward Fuller
Mark: "My passion for poetry began àt a very early age. At fourteen I won a poetry prize at school. While there were periods in my life when I was too busy to write, poetry has become an increasingly integral part of my life over the past 20 years and now there's hardly a day that I'm not busy with my poetry. The first poets who deeply influenced me were Ted Hughes, T.S. Eliot, John Betjeman, Philip Larkin, Tony Harrison, and Seamus Heaney.
Later, I was also really impressed with the works of Auden. As a journalist in the 1980s, I had the chance to interview some of my poetic heroes, including the American Beat poet Allen Ginsberg and the British punk poet John Cooper Clarke."
What do you gain from writing poetry?
"I have a deep love for words, rhymes, and verses. Writing poetry allows me to express my emotions and thoughts. During the more difficult moments of my illness (I was diagnosed with Parkinson's Disease in 2007), it offered me an opportunity to reflect on my life."
Who are your role models?
“I value different styles of poetry; Betjeman is a poet in the classic sense while John Cooper Clarke is a rebel.
Song lyrics or poem
"I value both forms. When it comes to lyrics, I work closely with the musician. In contrast, poems are created independently. For lyrics, I sometimes take on commissions which means the musician has a specific concept, story, or atmosphere that he wants to convey."
'This Is Me’
Through poetry, I discover a deep connection to my identity – reflecting on who I have been and who I will always be, despite my diagnosis. For many years, I dreamed of creating a book that would include all my personal poems. Finally, I have realized this aspiration, thanks in large part to the steadfast support of my wife, Abi, and several cherished friends, including musician Rene van Helsdingen and Leah van Tooren.
"I aim to inspire reflection and allow people to truly feel the powerful influence of language."
Presenting Your Poetry
"I absolutely do, as that's when the poems really come to life. I strive to perform regularly at the open mic nights hosted at a local poetry café (Labyrinth). I've also participated in a poetry festival.
Even as my speech declines due to Parkinson's disease, I continue this pursuit. It grants me strength, confidence, and a sense of fulfillment."
What guidance would you provide to those who aspire to start writing poetry?
"Simply take action! It will enhance your life."
A
poem taken from the book.
The book ‘This Is Me’ is now available.
If you want to order a copy of the book (118 pages, hardback), send an email with your address to Abi Daruvalla via this link or send a message via Facebook.
Price for orders in the Netherlands: €17,50 incl postage. Please pay by bank transfer to M.E. Fuller NL69 ABNA 0591378248 (reference: book).
* Cost for orders outside the Netherlands on request.
The Parkinson Boxing Event on October 20 was a beautiful day with new connections, friendly, a nice informative lecture and a boxing challenge in the afternoon. All this in honor of the fact that Parkinson Boxing Nederland exists for 10 years. And made a beautiful benefit day with the proceeds for Stichting ParkinsonFonds at the beautiful location at Only Friends in Amsterdam. Only Friends is a place where people with a disability can do sports and meet each other and recently also parkinson boxing is given. A beautiful club building with a nice restaurant, conference room and of course an indoor sports hall, where the parkinson boxing took place.
Sponsor Vanreusel Snacks thanks a lot for the free snacks. We enjoyed them after the boxing challenge. Thank you!
Wendy's 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 are working for people with Parkinson’s, interviewed researchers, and covered various events.
It is (and remains!) an incredible honor to give these stories a platform.
This Christmas edition is a warm, festive publication full of inspiration, stories and hope. It is perfect to share with friends, family or acquaintances as a small Christmas gift. The best part? 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?
I wish everyone a very happy holiday season. Let's continue to build understanding, hope and connection together next year. ��
COLOPHON
Questions, compliments, complaints or spotted a mistake? For tips, interview request, article submission or advertisement placement. Click here to send an email.
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, nor can any claims be made.
