ENG - Wendy's Parkinson Journey Geniet van het leven - nr. 6 - 31 oktober 2023

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Enjoy life

"You are not alone, together we are strong."

Interviews sponsors Rock Steady Boxing Ede & Cue2Walk

October 31, 2023

Vrouw en Parkinson Special Woman & Parkinson - Willanka Karin & Samantha Rock Steady Boxing Ede - Hans Anita & Irma Cue2walk - Floor My body is playing tricks on me.

Just call Janneke

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At the start of the day

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Woman & Parkinson Event - June 16, 2023 at Recreatiepark De Dikkenberg Wendy: “I find it important that more attention is paid to women living with Parkinson's. Until recently, the differences between men and women in this disease were not discussed. And there certainly are!

Think of hormones, menstruation, pregnancy and menopause.

This event has created connection and we talked briefly about women may have specific problems. In this magazine, attention is paid to women specific needs and problems. It is good to pay more attention to the very important Woman & Parkinson's research that is taking place at the Radboud UMC by Annelien Oosterbaan and Willanka Kapelle.”

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THANK YOU Patrick from Café Schaapskooi De Dikkenberg and Tom from Recreatiepark De Dikkenberg for the fantastic welcome and sponsorship of the location, coffee and cake, the extensive buffet, drinks and all the equipment we used on this day.

What a wonderful day! Thank you!

All 25 women enjoyed the Woman and Parkinson's event at Recreatiepark De Dikkenberg in Bennekom.

Panoramaweg 27 Bennekom

Thank you Annelien Oosterbaan and Willanka Kapelle for the interesting presentation about women & Parkinson's.

Thank you Samantha for the beautiful location at Recreatiepark De Dikkenberg urney o J n o s n i k r a Wendy's P

Thank you Els and Kees for the hand massages and the conversations.

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Are you sure you feel that?

A question that many women hear when they encounter vague complaints. It is immediately assumed that these are complaints related to menstruation or menopause. As a result, many women are diagnosed with Parkinson's at a late stage.

And therefore not the right care.

is female

The women who participated in the Woman & Parkinson event on June 16, 2023 at De Dikkenberg Recreatiepark.

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"Thank you, Wilma! Your efforts to style their hair, provide makeup and let the women shine."

photographer Kees

1.

2.

Stylist Wilma Scholte

photographer Laura Thank you Laura and Kees for the beautiful pictures. urney o J n o s n i k r a Wendy's P

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Wendy: “It is important to also pay attention to maintaining a positive attitude, especially for women. How can we ensure that we continue to feel good? See if you know other women with Parkinson's or look for them. Women who also enjoy doing activities together. Whether you are a group of power women or simply want to experience new adventures together, create your own group that suits you. Inspire each other, do fun workshops together or organize activities that you can enjoy together. In everyday life, Facebook or WhatsApp groups especially for women can offer a solution. This way you can have a nice conversation with someone that you encounter as a woman and understands. Or just have a nice chat. The women at the Woman & Parkinson Event were all so relaxed and enjoyed being with only women on this day. A sunny day with women all dressed brightly and summerily and a stylist doing their hair and make-up. How fantastic it was to have this organized!”

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Young women

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What do they have in common?

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Maaike (40) was diagnosed with Parkinson's 2 years ago. Among other things, she suffered from a dragging leg and just continued to struggle with it. Parkinson's was not suspected until she was referred to Bart Post, the Parkinson's neurologist at Radboud UMC. Due to her early menopause, Bart Post referred her to gynaecologist Dr. Bogers at RadboudUMC Nijmegen.

The neurologist at Radboud UMC can now refer you to gynecologist Dr. Hein Bogers.

“It was very nice to be able to discuss my menopause problems with him. He is a very friendly man who makes you feel comfortable.” She also has good experiences with her Parkinson's nurse in Ede. “She knows a lot of people, which means she can switch very quickly.”

“I think that women-specific problems should be more discussed. There are still a lot of women who are reluctant to discuss these problems with a healthcare provider or physiotherapist. The threshold must be removed. Making it known how the disease affects you as a woman. It seems behind closed doors. It really needs to get more attention.”

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Exercise makes us feel better, so also on this event

Boxing with Hans Louwerse Rock Steady Boxing Ede

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It's okay to prioritize yourself sometimes.

Experience Those around you are capable of taking on Physical and certain tasks themselves. You don't have to bear all the burden alone. Make time for Mental Wellphysical activity or something that brings being and you joy and relaxation. Work out with a happiness friend and take pride in your through Exercise accomplishments. It's important for young women with Parkinson's to have moments where they feel like themselves. Find the type of movement that suits you best and brings you happiness.

Physical activity promotes the production of endorphins and dopamine, which contribute to an overall sense of physical and mental well-being. This is particularly relevant to women, as studies have shown that they are more susceptible to depression.

So ladies, get moving

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Despite living with Parkinson's disease for over two decades, 59-year-old Anita Mathijssen has never stopped fighting for herself and others. Not only she participated in events like BikevoorParkinson and the ‘Nijmegen Vierdaagse’, but she is also a vocal advocate for Parkinson's awareness.

In fact, she was even interviewed on the radio in 2019 to discuss her experience with the 'Vierdaagse’.

Woman Being a woman, she believes it is important to look and feel good. However, struggling with weight can be discouraging. She wonders if medication or the phase of the disease could be a contributing factor.

Additionally, Anita also mentioned that bladder Stay optimistic and don't isolate yourself. Instead, try problems are a common issue associated with to go out and make new Parkinson's disease, often causing her to wake up at experiences. night to use the restroom.

Woman & Parkinson event Anita: “I had a wonderful time meeting new people at a beautiful and cozy location. The atmosphere was very relaxed, making it a memorable day.”

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Annelien Oosterbaan “Give a girl the right shoes, and she can conquer the world.” (Marilyn Monroe) urney o J n o s n i k r a Wendy's P

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Janneke: As a woman with Parkinson's, it is sometimes difficult to still feel like a woman. You still want to walk elegantly and not make your entrance somewhere stumbling. Getting up from a table in a restaurant, for example, can also be quite a challenge. You don't want to bump the table, drop your bag, or drag the entire tablecloth with you.

You often also have to navigate between other tables and not knock anything over or end up on someone's lap. So supreme concentration ;-)

Women tend to express what they feel or experience for others, including when it comes to Parkinson's. It can be annoying when people think that Parkinson's is not too bad because you apparently look normal.

Women want to know how you feel, while men are more interested in facts. Men and women often differ in the way they deal with the disease.

Men regularly depend on their female partners for help and support, while women often try to solve things themselves for a long time. In a woman with Parkinson's, multitasking usually continues for a long time. Probably because they have been used to doing several things at the same time for a long time. A job, children, household, social contacts. Men experience more problems with partial tasks.

There comes a time when organizing appointments and administration becomes a challenge. A solution must be found for this.

It is important to realize that the medication for Parkinson's is often aimed entirely at men and is not always suitable for women with a completely different hormone balance, height or weight.

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It is a good development that more and more women are involved in knowledge centers for Parkinson's. This offers an opportunity to highlight the feminine side of this disease.

By supporting each other, women feel less lonely. Sometimes just sharing a few sentences or listening to each other can help. It is important to ask questions and really listen to the answers without judging or deciding what someone else should do. In difficult moments, you can offer support by simply sitting next to someone and saying it's okay. Humor can also help to break the tension and maintain interest in each other.

It is crucial not to doubt yourself and not deprive yourself of your chances of a beautiful life. Realize that you are not alone and don't focus too much on the long term. Yesterday is gone, tomorrow is far away, but today you can make it a beautiful day! Don't waste the time you have left thinking you can't do something or are too old for it. Do what you want and don't procrastinate. Be honest with yourself, listen to yourself and discover what you really want, who you are and why you do what you do.

There is a need for much more attention, understanding, knowledge and insight for Parkinson's in both women and men. It is a complex disease and you cannot compare it with other diseases. The disease is everywhere in your body, wherever there are nerves, which is unfortunately everywhere. The disease has multiple causes and that makes research extremely complicated.

But giving up is not an option. We continue. More understanding and insight into this disease is needed. There is an enormous growth in the number of people with Parkinson's.

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Thanks Sponsors Recreatiepark De Dikkenberg - Café Schaapskooi De Dikkenberg - Boston Scientific - Cue2Walk - Rock Steady Boxing

Goodies bag A goodie bag is always nice to give and to get. The ladies were spoilt, they all left with 2 bags.

Thanks for the products

Elmex - Oil of Olaz - Always - Oriflame - Giftbag of Etos Woerden Voorstraat - Beauty and Wellnesscare Luna - Berg's Bakery Gouda - and several samples of skin care, vitamines, etc. - information leaflet Rock Steady Boxing and Cue2walk present The Rituals.

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Els is a woman who is always busy. For example, she gives presentations about Parkinson's. And especially lately she has been on TV or given an interview. When she was young she did vacation work in the fields during the holidays and attributes her Parkinson's diagnosis to that. With her bare hands she picked bulbs which have been sprayed with the controversial substance glyphosate. Glyphosate has been linked to Parkinson's.

Els encounter a variety of issues, such as oily skin and osteoporosis. Els is looking for a solution to her oily skin and wondering why people with Parkinson's are more semsible to get osteoporosis. Her back pain and stiffness are worsened by this condition. Additionally, Els has noticed the effects of Parkinson's on her appearance, including a receding hairline, which requires a specific haircut.

She is looking for tips on how to dress stylishly and if there are necklaces that don't require fastening at the back, which has become challenging for her.

Els was diagnosed with Parkinson's ten years after she fell, and she wonders if this was already a symptom of the disease.

Woman & Parkinson event Els: “I enjoyed Annelien and Willanka's presentation and I really enjoyed the afternoon with the various activities.”

Stay connected to your femininity and discover what else you can achieve. Take care of yourself.

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Parkinson's is often confused with Alzheimer's, which often deprives us of the opportunity to have a nice job.

The fact, however, is that young people who are diagnosed can still be very good cognitively and that work actually gives them a positive vibe, which means they can continue to do well for longer.

Many examples of people with Parkinson's who have started doing something themselves demonstrate that working has a positive effect.

Work and Parkinson's

See also the podcast with Wendy and Annelien, 2 women who live with Parkinson's and talk about work and Parkinson's. This podcast is made possible and hosted by Reinout Slee of UwVerzuimdirector.

Listen to this inspiring podcast with Nathalie Sulman from Jobon, hosted

by Reinout Slee from UwVerzuimregisseur.

How can you give meaning to your life that suits you? How can you use your talents or develop new talents.

www.wendysparkinson.com

Together we are strong A new Facebook group for only women with Parkinson's. a place where you can ask, share with women about your women-specific complaints and other women's issues or organize an event especially for women. A place where women feel at ease. Click here. ney r u o J n o s n i k r Wendy's Pa

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Annelien Oosterbaan: “Speaking from my own experience in 2022 when I was pregnant with my fourth child, but my first pregnancy after being diagnosed with YOPD, pregnancy and Parkinson's go well together. Deciding to get pregnant felt risky, as the literature on the subject is sparse and I just didn't know what to expect. The most important thing for me, besides the potential risks to my baby, was whether the disease progression would accelerate as a result of the pregnancy.

As a gynaecologist, I delved into the scientific literature, but found no ready-made answers.

That has to change! It has become my personal mission to build an international pregnancy registry (pregspark) for women around the world living with Parkinson's.”

PregsPark “We kindly ask all pregnant women with Parkinson's to register on this website. Fortunately, my Parkinson's has not worsened due to the pregnancy, I am back in the same shape. I exercise intensively and therefore feel physically fit. Afterwards, I am happy that I dared to make this choice and I really enjoy my beautiful family. I wish that for all YOPD women who want to have children.” Annelien Oosterbaan

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Woman & Parkinson - book and video

Book written by Annelien Oosterbaan and her colleagues worldwide about women-specific problems with Parkinson's.

The book can be downloaded here

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Dominique: "A new, more realistic image of people with Parkinson's would be good. If you search the internet for information about the condition, the first thing that comes up is the stereotypical image of an old, hunched male.

It is time for this to change and to become clear that (young) women can also have Parkinson's.”

Let's also do more together. The women and Parkinson's event was wonderful to be a part of. Don't be afraid to meet new people. Since I've been active, I've met so many interesting people, including inspiring people with Parkinson's. Let's not criticize each other in Facebook groups, but rather be there for each other.

You often see that women continue to take on the caring role, even if they have Parkinson's. Dare to let go of that role a little more and think about what is good for you. What would you like to do, what makes you happy?

If you enjoy putting on make-up and dressing, try to keep doing it, even when it becomes a challenge. Don't get discouraged too quickly. But: it should not become an obligation either. If you have a special occasion where you really want to shine, you can always hire a make-up artist. Think of it as a gift for yourself, a special experience that will also leave you with beautiful pictures.

P.s.: I found it funny, but also shocking, that mice in laboratory research are often male.

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Medication

The medication responds to how much we weigh, what our physique is, but also to hormonal fluctuations (from menstruation to menopause). That is why it is very important that women are also included in the clinical studies.

If you experience a different effect of your medications during your period or menopause, discuss this with your healthcare provider!

It is known through experience that your Parkinson's complaints can worsen before and during menstruation. The pills may work differently or not at all. Many young women with Parkinson's indicate that they experience complaints in the week before, up to and including the first days of the cycle. This can cause you to suffer more from both motor and non-motor symptoms. This needs to be further investigated scientifically.

Some women take extra doses of levodopa for these complaints. But discuss this with your healthcare provider!

Worldwide work is being done on a guideline for women with Parkinson's.

There are now international research surveys aimed at characterizing these women-specific problems.

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Saskia: I have a selfinsured female GP who is incredibly knowledgeable about the human body and healthcare. She is the perfect person for me to share my personal experiences with.

What still deserves attention is a good bra with underwire and a front closure. It is crucial to find a bra that fits well and stays in place during exercise, while also being easy to wear. For those with larger sizes, I recommend browsing Ulla Be honest and open about your condition. Don't Popken's selection. feel ashamed and never hesitate to ask for assistance when you need it.

After showering, wrap a towel around your hair and put on a bathrobe for swift drying.

Being creative is one of my passions, and I often enjoy painting in my garden and designing easy-to-wear clothes. Since my left hand doesn't work well, I've started creating clothes with Velcro closures to make it easier to put on and remove.

How was your experience at the women and Parkinson's event?

It was such a fun time getting our hair and makeup done.

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MAIN SPONSOR

Woman and Parkinson's event

Welcome to De Dikkenberg

Make your dream come true at De Dikkenberg YOUR holiday home in Recreatiepark the wooded area of ​ Bennekom. Walking, cycling, enjoying nature and socializing in the park.

Come by and feel the atmosphere.

Relax on the terrace at the Eetcafé

'De Schaapskooi’ View our extensive menu For lunch, dinner or a snack

SOMETHING FOR EVERYONE

Main sponsor Woman & Parkinson's event

The robin has a deeper meaning. Together with her husband Tom, owner of Recreatiepark De Dikkenberg, Samantha has chosen a robin as a logo that also represents what they stand for.

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Samantha: "You see the robin all year round and it symbolizes hope. And my hope is that everyone who comes to us is happy, positive and that they can have a good time here at our park. The orange color in the bird is in the shape of a thumbprint and it symbolizes encouragement in life. Whether things are going better or worse in life, we have to do with it.” Samantha chose this logo from her heart. Samantha gives this logo a deeper meaning because she lives with Parkinson's. Samantha: “Seize the day and enjoy what the day brings you.”

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Willanka: "At the Radboud, I am doing my PhD research (PHD) that focuses on Parkinson's disease at a young age.

One of my projects is the Woman and Parkinson's project.”

Willanka Kapelle - PhD-researcher Woman and Parkinson's Empowering Women to Prioritize their Health and Well-being It's not easy to prioritize your own needs and well-being, especially with all the other demands in your life. However, it's essential not to sell yourself short. There are options and resources available if your condition worsens, and many individuals who are eager to help. Remember, there is often something that can be done to improve your situation. It's crucial to pass this message on to other women, so they can prioritize their health and well-being too.

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Contrary to initial beliefs, Parkinson's disease affects a significant number of women. In fact, 40% of individuals with Parkinson's are female.

The Women and Parkinson's Project is an outstanding research program that seeks to enhance the understanding of Parkinson's disease in young women. By conducting thorough research, the initiative aims to discover ways to improve care and support for this group.

Annelien Oosterbaan and Bart Post, colleagues at Radboud University Medical Center, observed that young women with Parkinson's disease were facing many female-specific challenges.

Annelien, who lives with Parkinson's and leads the Woman & Parkinson's project, and Bart, who specializes in young and Parkinson's in the Neurology department, joined forces to conduct an in-depth study. Willanka, a PhD candidate, later joined the team to help with the valuable project.

Willanka is passionate about her work with the team, which focuses on the impact of hormonal fluctuations on young women with Parkinson's. They have discovered that many women experience a spontaneous worsening of their symptoms during hormonal changes like the menstrual cycle and menopause. The team is committed to identifying patterns and finding solutions to better support these women.

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Apart from hormonal fluctuations, research on women's health also delves into psychosocial factors. According to Willanka, the study examines the impact of social pressure, work and home situations, loneliness, and self-image on women. These issues often manifest differently in women than in men.

The Significance of Parkinson's and Pregnancy in the Project In addition to other important aspects of this project, Parkinson's and pregnancy have been given special consideration. Willanka notes that young women with Parkinson's often desire to have children, yet there is limited knowledge on how the disease might impact pregnancy and vice versa. To bridge this gap, an international registry for pregnant women with Parkinson's has been established. Participants can register and complete questionnaires during and after pregnancy to provide essential data. If you're interested in registering or obtaining more information, please click here.

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Hormonal Fluctuations and Menopause According to Willanka's recent questionnaires, around two-thirds of women stated that their symptoms worsened during menopause. While some symptoms may be associated with both Parkinson's disease and menopause, distinguishing between them can be challenging for women. However, there are specific symptoms that are linked to Parkinson's disease, such as excessive mobility, fluctuations in medication effectiveness, and tremors.

Therefore, menopause may indeed have an impact on Parkinson's disease symptoms.

Tips and Lifestyle Advice According to Willanka, many women responded to the Women and Parkinson's project by saying, "Oh yes, I suffer from that too." However, they believed that it was simply a part of being a woman and that they had no choice but to deal with it. Willanka finds this notion to be extremely distressing, as it suggests that women are still expected to endure such challenges.

Examining your own body and identifying any potential issues is the first step in taking care of yourself. If you notice any discomfort or irregularities, don't hesitate to speak with a healthcare provider. They can assist you in finding the best possible solution for your unique situation.

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Radboud has teamed up with gynaecology to provide better care for women with Parkinson's disease. If you have a hormone-related issue, you can be referred to Hein Bogers, a gynaecologist at Radboud who specializes in treating hormonal problems. Willanka, a member of the Radboud team, explains, "It's great to have a specialist who can provide additional support and expertise in treating hormonal problems."

Although Radboud is making strides, it would be even more beneficial if more gynaecologists across the country were willing to offer similar services.

Meet each other According to Willanka, dealing with difficult situations regarding women's issues depends on personal preference. Connecting with others in similar situations can be beneficial, but it's not necessary for everyone. She suggests researching the topic at your own pace and deciding if it's right for you. Once you've taken that step, she notes that people often find comfort in the sense of community and validation it brings. It's important to connect with a group of people who share similar experiences to avoid feeling out of place.

Relationships and Parkinson's My current PhD research examines the impact of Parkinson's on young people's relationships. This is a significant and complex issue since much of what occurs behind closed doors is often unseen by healthcare providers.

It's essential to bring more attention to this area. We will explore whose responsibility it should be to address this issue, but it's a crucial aspect of life that cannot be overlooked. Urgent action is needed to tackle this problem.

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The Power of Women Supporting Women During my internships, I had the opportunity to explore both neurology and gynaecology. Though I had some reservations after my gynaecology internship, I ultimately decided to pursue neurology.

However, when I heard about this project, I was thrilled at the possibility of combining my two passions in my PhD research. It was the perfect opportunity. Not only that, but as a woman myself, I take great pleasure in contributing to research that benefits other women.

It's important that we support one another, especially as young women.

For those who are interested in gaining more insights into Willanka Kapelle's research and the Woman and Parkinson's project, please don't hesitate to contact Willanka via email by clicking here.

Articles based on the research will be published soon and will be made available to participants.

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It is clear that menopause in women has an influence on Parkinson's disease.

Menopause marks a significant period of transition for many women, as their bodies undergo various changes and aging occurs.

During this time, women may find themselves grappling with questions about their work, their children leaving home, their relationship with their partner, and their own physical appearance.

Karin

Parkinson's disease induces changes in both body and mind, which can be challenging to cope with. It's difficult to differentiate if these changes are due to menopause or Parkinson's.

TIt's important to recognize that everything is connected when it comes to managing your health. Exercise, hormones, medication, relaxation, sleeping, stress, and nutrition all play a role in keeping your body and mind in balance.

As someone with Parkinson's, I've noticed how my hormonal fluctuations can impact my symptoms. Sadly, my neurologist has been unable to give me a clear answer when I've asked about this.

It is crucial that women in their fifties who have been diagnosed with a medical condition speak up and share their experiences.

Wendy has taken the first step towards raising awareness on this matter.

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For more information about DBS click here Go here to the website of Mariam Bennouna

Irma: clinical technology students were tasked with finding solutions for people with Parkinson's, and I was interviewed to help identify a problem and a potential solution. I mentioned that applying makeup had become increasingly difficult, which led to the creation of an antitremor spoon attachment featuring a makeup brush. It was incredible to see what they came up with!

In addition, I have some useful tips for women with disabilities. Check out Tommy Hilfiger's adaptive clothing line, which is available online and designed specifically for people with disabilities. The clothing includes adapted zippers and We need to take action and update magnetic buttons, and is affordable. the stereotypical portrayal of You can also search for adaptive Parkinson's patients on Google. clothing options online, as there are Instead of the typical elderly man, many available. Vogue even let's aim to feature more young dedicated an article to this topic, women. Let's make a difference! which you can read by clicking here.

The traditional design of bras, where hooks on the back must be forcefully attached to one another, is no longer ideal. Many women are seeking bras that are easier to put on and provide greater comfort.

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Irma's Kitchen: Customized for Parkinson's disease with useful tips Irma, who has Parkinson's disease, has made several adjustments to her kitchen to make cooking easier. Because her arm does not move properly, she had trouble with the standard countertop height. To address this, she lowered her countertop and can now cook with ease.

Additionally, she has an oven with a unique feature – the door folds flat and slides away, allowing her to take items out of the oven without any obstructions.

To relieve muscle tension, Irma used to visit a physiotherapist regularly for massages and dry needling. However, she now has a bed with a vibrating function that has helped ease her back and shoulder problems. Just by using the vibration function for half an hour daily, she feels relaxed and no longer needs the extra therapy.

Irma also has a helpful tip for people with Parkinson's disease: after showering or bathing, wear a bathrobe instead of using towels. She refers to it as a "sleeved towel" and it saves her a lot of hassle.

Lastly, Irma wants to encourage others with Parkinson's disease to be open about their condition and not let it hold them back. She advises against hiding away and to be proud of who you are.

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JustJust call call Janneke Janneke Everything still has to get to me quickly. I still don't have the peace to do things slowly.

And go on.....

Yet I will be forced to learn to slow down. I'm getting older and Parkinson's is getting in my way and making me stiffer, slower and more unstable.

I hope that I will not become insecure and will be able to ignore the world that is becoming increasingly impatient and unforgiving.

I'm talking about people without empathy, who drive around curt, angry and honking with their middle fingers raised.

I'm going to teach myself that I just don't see them and that, completely resigned to my slowness and stiffness, I walk on with intense happiness, leaning on a walking stick. I'd rather not have a walker, but... a real walking stick with a beautifully crafted knob.

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Just call Janneke

And because my friends are also getting older, they will also become slower and we will shuffle around the village like turtles. One step at a time, it doesn't look like much, but we are making progress and we find each other beautiful in our slowness and are simply kind to each other.

When I arrive at my house, I pour them a glass, trembling.

We have time and are happy and content and never out of mood.

Which is certainly not an unpleasant prospect in this ruthless, impatient, aggressive world.

Because no one stays young and healthy forever.

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Samantha & Karin

Samantha & Karin, together with a group of Italians, experienced a wonderful cycling adventure from beautiful Italy to the impressive World Parkinson Congress in Barcelona. urney o J n o s n i k r a Wendy's P

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Samantha's 4th bike ride with the group from Italy of the Parkinson & Sport Foundation was an unforgettable adventure.

Samantha: “Cycling gives me both physical and mental energy. It is my passion, an escape from everyday life. It brings freedom and happiness. On to the next trip!”

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Cycling has always been a passion for Karin, and she had already made several long-distance cycling trips, including an impressive trip from the Netherlands to Rome with Parkinson2Beat in 2019, where Ruud raised € 10,000 through the Warm Heart Campaign.

During these trips she wrote blogs that attracted a lot of attention, with around 1,500 views per blog.

Karin also participated in BikevoorParkinson for the eighth (!) time this year and cycled to Berlin in 2021 and to Düsseldorf in 2022 together with Theo van Neerven. They took part in the Table Tennis World Championships for people with Parkinson's in preparation for The Parkinson Games.

This year she took another bike ride to Barcelona! Cycling is always a challenge for Karin. When Samantha told her about the trip to Barcelona, ​Karin was immediately enthusiastic to participate.

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This journey with exclusively Italian-speaking Parkinson's sufferers was a real challenge for her. She has now learned some words. These words were regularly shouted on the bike to warn you. Such as 'Girare Sinistra' or 'Aspettare' which means turn left or wait a while.

The welcome within the group was very warm and cordial. You belonged right away. When something was said, it was often repeated in English or Samantha translated it into Dutch for me.

But when Italians were talking to each other for a moment, I really didn't understand anything at all. Then I was really like, what is this about? In short, it was a very close-knit and very involved group, where I felt good.

The first two days of the trip went through the mountains, but Karin was well prepared and found it mentally more difficult than physically. She had trained well in advance and also done strength training for her arms.

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Every day they planned their route, along the Cote d'azur, but sometimes they drove wrong and had to stop or deviate. They cycled through meadows and forests, but also through picturesque villages and busy cities.

They often had to improvise by choosing different routes and encountering tractors instead of cyclists along the way.

We cycled everywhere we could. It was really a wonderful experience. When we arrived in Barcelona we cycled through the middle of the city. There you had to take oncoming traffic into account again.

We were among the first to arrive there.

That was beautiful. Everyone started clapping as if you had won the Olympics! It was nice that there were people waiting for you. We stayed there the first day. The Spanish group arrived last. There was even a group all the way from England! All cyclists were emotional that day.

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We all want the same thing: to get more attention for the disease and being there and seeing each other made it very emotional.

Nice to meet people who have Karin would have liked to stay longer, but they came and went as a group. She the same goal. spoke to many people and even got a smart watch that monitores her medication and health parameters. This adventure will always have a special place in Karin's heart because of the special people and the common fight against Parkinson's. An unforgettable experience!

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Hans Louwerse, a former karate practitioner, found his calling in boxing and kickboxing. Despite his background as a tiler, he and his wife Dini decided to set up a gym where they train people in various martial arts, boxing and kickboxing. Together they have not only set up a gym where people are trained in various martial arts, but they have also pioneered the field of Parkinson's BoXing.

Hans Louwerse has personally experienced the impact this disease can have, because his father suffered from the condition and died in 2004. If he had known then that boxing could have such a positive impact, he would have happily taken his father to the gym.

In 2014, Hans and Dini heard about boxing lessons given in America to Parkinson's patients, which marked a turning point for them. Under the guidance of Heleen Burghout, a physio partner, they started with Parkinson BoXing.

It started as a way to relieve physical symptoms, but it soon became apparent that boxing had much more to offer. It not only gave the participants a physical challenge, but also created a sense of selfconfidence and determination. In 2014, Hans and Dini were presented with the Parkinsonnet innovation prize at a conference in Utrecht.

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In 2016, the couple traveled to the United States to attend the Rock Steady Boxing training. Rock Steady Boxing is a global movement that uses non-contact boxing-inspired training to reduce the symptoms of Parkinson's and slow the progression of the disease. With over 870 Rock Steady Boxing partners worldwide, and a total of 43,500 coaches. The training lasted 3 days.

Hans: “Then we went to New York for a few more days. But we didn't see much of it because we were so impressed and only talked about Rock Steady boxing.”

Photo or film from America

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The enthusiasm and positive impact of this program on Parkinson's patients prompted Hans and Dini to bring it to the Netherlands. Because the American organization was initially not open to providing the training in Europe, Hans started setting it up himself. To date, Hans and Dini's team has trained approximately 60 boxing schools and more than 100 boxing instructors in the Netherlands.

Hans: “Out of necessity, we started setting up our own training course. We have been giving boxing lessons for about 30 years and wanted to put something together ourselves so that we could offer it to others and thus obtain more boxing schools for people with Parkinson's. With, of course, the concept of Rock Steady Boxing from America as an example.”

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Hans: “For Parkinson's patients who want to set up a boxing gym, the presence of skilled trainers is crucial. The story of Henry van der Dussen, who trained with two others for his boxing gym in Rotterdam, is an inspiring example of this.”

The World Parkinson Congress in Barcelona was a milestone for Hans and Dini. They had the opportunity to lead a workshop and were impressed by the passion shown by the participants. The demand for sessions exceeded their expectations. Hans had met the organizer, John Pawelkop, before. John travels all over the world to train at every Rock Steady Boxing location. He was also in the Netherlands five years ago and this year he was ambassador of the World Parkinson Congress.

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John called Hans and Dini to ask them if they wanted to lead a workshop. The couple was of course immediately enthusiastic and they even managed to give a 1.5-hour workshop instead of one hour.

They were also assigned a large room that could accommodate 100 people. To prepare well, they took all the boxing gloves they had (80 pieces).

On the first day they were surprised by a group of cyclists who entered. These cyclists came from all over Europe and they cycled for charity to the World Parkinson Congress in Barcelona. This was already a great experience. On Wednesday it was time for their workshop and 100 tickets had been made available. The sessions that were previously held in the same room were not as well attended.

About 15 participants each time, but Hans and Dini approached it differently.

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So Hans came up with a plan. “What if we put on a pair of boxing gloves, walk into the hall and announce that we are going to have a boxing session at half past twelve.” Dini turned out a few A4 pages announcing the boxing session in which room and stuck it on their shirts. “We only had to tap someone to have them look at our shirt.

The nice thing is if you tap someone with Parkinson's, they immediately want to talk to you, because they want to know what you do. We met a Japanese woman who also did boxing and took a picture of us 5 to 6 times. Every time she met us she wanted to take a picture with us.”

During the workshop there were even a number of people standing outside the room. They were unable to attend because the hall was full. There was only room for 100 people of course. The people were ecstatic. It was only 1 session. “If we are allowed to participate next time, we will indicate that we will do so and every day want to do 1 session. This way, people have a better chance of participating in a boxing session regardless of the other programming of the conference.”

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REIMBURSEMENT Dini is currently investigating whether Parkinson's boxing could be reimbursed through insurance, similar to other therapies. This would increase accessibility and provide broader support to those who need it. Hans: “This is a very difficult process. We have now received the scientific evidence from America.”

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It is always a good idea to organize an event for people with Parkinson's, but try to make it free, such as the 'Bas Bloem' weekend in Nijmegen. A lot of people no longer have the money to pay for all this. The Parkinson's weekend in Nijmegen was a good example of this.”

At Sport Team Ede you can not only go for Parkinson BoXing, but also for Body & Brain Training. This is a combination of physical and cognitive skills. Hans and Dini have designed these classes to get the best out of the participants, both physically and mentally. This approach, which combines exercise and mental challenges to stimulate both hemispheres of the brain. To make this training more accessible to people who cannot easily travel, they now also offer classes via Zoom.

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Hans: "During the Parkinson's boxing training, groups of 12 to 15 people train together. Three to four trainers and volunteer buddies assist the Parkinson's patients during these sessions. It is fantastic to see that former boxing trainer Ab, even at the age of 86, is actively involved in the lessons for nine years. He had stopped regular boxing with us, but when I told him about these Parkinson's boxing lessons, he came back especially. Everyone enjoys the lessons and I am always able to get them exhausted at the end of the training, from the effort they did."

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Hans and Dini have been offering boxing lessons for 9 years, which are popular among both men and women. Hans notes that 40% of the participants are female and many of them have never exercised before, but find boxing a fun and challenging activity.

The warm-up consists of a varied mix of movements, including sports aerobics and specific boxing exercises.

The training always includes boxing, but a training consists of much more.

Hans & Dini have a backpack full of experience and they use this to train their boxers in all facets. Balance, stretching, strength, fine motor skills, speech, posture and memory are all discussed. All exercises are based on dealing with Parkinson's.

Sport Team Ede and ParkinsonNet have joined forces to organize workshops for Parkinson's physiotherapists and nurses. During a training day, a boxing workshop is given in the morning by Sydney from Zeist, an experienced boxing instructor.

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We then provide Parkinson's boxing training to the same physiotherapists in the afternoon. Afterwards, the participants can come up with an exercise themselves. These physiotherapists are familiar with the characteristics of Parkinson's and can earn accreditation points for their participation.

In addition, Sport Team Ede also offers Parkinson's boxing workshops.

They have already given workshops at Parkinson Café Bennekom, Arnhem, Ede and Barneveld. Parkinson cafés usually plan their activities a year in advance. Alex Hoogveldt plays a role in promoting these workshops. If there is interest in a workshop, they will go there together to realize this possibility.

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Hans and Dini want to inspire others to further spread Parkinson's Boxing and offer a unique training to become a Parkinson's BoXing coach. They encourage people to start their own Parkinson's boxing gym to jointly support Parkinson's patients in their battle.

Hans: “There are now 2 boxing school training courses planned for September and November and they are both almost full. The training will be renewed from 2024, we will have 2 training courses, 1 for boxing and sports trainers and 1 for physiotherapists, occupational therapists and other healthcare providers who work with Parkinson's patients.

“Before I started boxing, I first did karate and then kickboxing. If you want to learn kickboxing well, you should also start boxing. So I also boxed for a few years to get a good handle on boxing. I always want to use my legs. We now also use this a lot for Parkinson's boxing, for example with one leg against the punching bag as a balance exercise.”

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Parkinson's boxing contains everything you need, such as flexibility, balance, coordination, strength, fitness and a mix of these.

Performing dual tasks is central to our training.

A dual task ensures that both the left and right brain hemispheres are active. This strengthens the connections between the hemispheres of the brain, the connections that are affected by Parkinson's. For example, dual tasks slow down the progression of the disease.

With a dual task you are moving and doing something active for the brain, for example: - you are doing a boxing exercise and the trainer comes by with proverb cards. You explain what the proverb means but you also continue to struggle at the same time. (this is often difficult, you often stop moving when you have to think, but we encourage you to continue moving at the same time!)

- there are various stations with strength exercises and with each strength exercise you read a tongue twister.

We have endless exercises where both the body and the brain are stimulated at the same time.

“This is how we fight back against Parkinson's! ' Many people have deteriorated during the corona period, but we are now really moving forward. For example, an 81-year-old woman came to class with a walking stick and after 3 weeks she walks in without a cane. She said “I feel more confident on my legs.” That's what Parkinson's boxing does.

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You can see that they are stronger, walk straighter, have better balance and express their words better. They also enjoy being there. I'm always really looking forward to giving a boxing lesson.

It's different every time. Every morning I write the day's lesson.

There is also a lot of laughter, sometimes crying, and always drinking coffee together after training.

That is also very important, people among themselves, they have nothing to be ashamed of, they all know what they have in each other, it is one big family.

We also organize a family day, when they all come to box together, the room is super full, and then of course they have a drink.

Usually around Christmas time and maybe a survival job next year.

Seeing boxers crawling through the mud on a family day seems fun to me.

Everyone feels very welcome at the gym. And they have also ensured that more and more coaches come through their training. In this way, they want to ensure greater quality of life and independence for people living with Parkinson's.

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Sport Team Ede offers various subscriptions for people of different ages and levels. The Parkinson BoXing classes are designed to get the best out of the participants, both physically and mentally. With movement as a weapon and determination as fuel, Parkinson BoXing offers an opportunity to meet the challenges of Parkinson's.

Hans and Dini invite interested trainers and healthcare providers to participate in their unique training to become a Parkinson's BoXing coach. Whether you have boxing experience or not, there are training opportunities available. These coaches are trained to not only offer physical exercises, but also to provide support and be there for people with Parkinson's.

At Sport Team Ede, everyone is welcome to fight against Parkinson's and strive for a better future, full of strength, movement and perseverance.

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Maaike: “After my diagnosis in the autumn of 2021, I started at Rock Steady Boxing.

Just a stone's throw away is a sports facility where the always enthusiastic Hans & Diny Louwerse practice their passion. They teach people with Acquired Brain Injury (NAH), such as Parkinson's disease. It is admirable that they traveled all the way to America to be trained to teach these classes.

Rock Steady Boxing offers a total workout that covers all aspects: strength, balance, multi-tasking, stretching exercises, and even cognitive training. It is a complete package of physical and mental stimulation.

What has Rock Steady Boxing done for me?

First of all, it has helped me to improve my fitness, which allows me to perform daily tasks as best as possible. After each lesson I notice that the stiffness, slowness and tremors are less present. On the day of the lesson itself and often the day after, I feel more energetic and vital. As a result, I went from exercising for 75 minutes once a week to now exercising for 75 minutes twice a week. It feels great to move!

I really like the coffee moment after training. Just sit together with a cup of coffee and chat about anything and everything. Sometimes it's about our illnesses, but often it's also about completely different topics, which is a welcome distraction. It creates a sense of community and offers support to each other. I hope that one day I will be able to exercise for 75 minutes three times a week, although that is not feasible at the moment. Who knows what the future will bring...

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My body is playing tricks on me.

Written by Henry van der Dussen I think I know all the levodopa and my child had the rest of the rules. Do not take pills one hour card delivered. I was quite proud of before and after a meal, be careful my self-control. Until we were done with (animal) proteins, alcohol, with the Amsterdam tourist trap coffee, etc. And to prevent friends and wanted to head for the train to and family from thinking you are a Rotterdam. Left foot dragging? complete jerk and never inviting Huh? Why? How? I took my doping you to anything again, you should right on time, and I didn't even also tell them. to explain. Easy? taste a tiny piece of chocolate! This Yes, simple and it works. Food has doesn't feel fair. Well, nothing you lost a lot of its charm because of can do about it, just walk a bit this, but who cares. I haven't angularly across the Damrak. There smelled or tasted anything for are more strange types shuffling years, so those strange eating rules around there, aren't they? It's not don't feel like a loss. But on top of all that bad. What is annoying is that, my body also appears to play that my child keeps a close eye on 'practical jokes' on me. For example. me all the time. She finds my slow A while ago I was sitting with my movement very dangerous in daughter in the Tony Chocolonely Amsterdam. café in Amsterdam. If you have children GO, they will be eternally grateful. I ordered a double espresso for myself (because of the rules).

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Continued - My body is playing tricks on me.

So at every crossing I am Around 7 o'clock I cycle - in a bit of practically dragged to the other a hurry - to the boxing gym. As side by this little teenager. always, I overtake electric bicycles Continue porridge. Just to be sure, while whistling and am therefore she also drags me through the still on time. I feel fine. Until I sit station labyrinth. Otherwise we'll down for a moment and feel the miss the train, Dad. Yes, that is turbo cutting out. Why? I want to indeed bad, missing the train to box! But there's no point in getting Rotterdam. And then the moment angry. I sit down, grab a book and my buttocks immediately touch listen to my boxing friends wear the intercity, I feel that my each other down. The more Zen I doping is starting to do its work. am, the less fun that practical Two hours late! Then where was joker has. Fortunately, the gloves your unreliable friend? can be worn again after 20 Yesterday it happened again. minutes.

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IRMA They recognized the warmth and commitment in each other. That grew into a special friendship.

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ANITA

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ANITA

Wendy: "Anita and Irma, two women living with Parkinson's who are both committed to their fellow sufferers with dedication. I have invited them to events before. This also applies to the Woman and Parkinson's Event and I noticed that they greeted each other as best friends. These two women have found each other through what they do for their fellow sufferers, and that is truly wonderful to see.”

On November 21, 2014, Irma participated in the bike ride from Radboud Nijmegen to the Parkinson Symposium in Utrecht, which was organized by ParkinsonNet. Anita was not present, but it later turned out that this is where their friendship developed.

Parkinson Friends for life Irma en Anita

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During the symposium, HRH King Willem-Alexander was present as guest of honor. ParkinsonTV was there to report live.

The group of cyclists, including Irma, stood on the stage.

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ANITA Anita in Irma

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ANITA

What happened now? Anita's colleagues said to her: “Hey, we saw you on TV!” Anita: “On TV? I don't know anything.”

Anita kept thinking about it and wanted to know who they had seen. Anyway, let's look back. And there she saw someone cycling past who indeed looked very much like her.

But that wasn't her, who was that anyway? Anita now understood her colleagues' reaction. When her colleagues saw this woman on TV, they mistook her for Anita.

They met for the first time at the next BikevoorParkinson. Anita remembers: "I was curious about who Irma was and looked around for her." Irma and Paulus had rented a house this year, close to the finish.

As Paulus walked back from the house to the festival grounds, he noticed someone walking about a hundred meters in front of him who looked exactly like Irma. Everything seemed to be right, from posture to hair and even the cycling clothing. Yet it could not have been Irma, because she was still in the house. So it turned out to be Anita. When Irma returned to the site, she heard about Anita who looked so much like her and went looking for her. And there was the moment where they saw each other for the first time. And of course, since Paulus has a passion for photography, he couldn't resist taking a picture of the ladies.

Parkinson Friends for life Irma en Anita

They met each other at various events. For example, at the farewell reception of the then director of the Parkinson's Association, Stefanie van Vliet.

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Irma and Anita kept in touch after the BikeforParkinson.

As the next edition approached, Anita asked, "Are you going to participate in the Bike for Parkinson's again, Irma?"

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ANITA

Bas Bloem and Marten Munneke were also present. This also applies to Irma and Anita through their efforts for their fellow sufferers at a Parkinson's Café. Anita in Loon op Zand and Irma in Delft.

Anita organized a family day together with the board of the Parkinson Café. During this day, two people came to talk about what it is like to deal with a parent who develops Parkinson's at a young age, and what influence this had on their lives and that of the entire family.

Anita: My daughter, Anne, also had something to say during this meeting.

Irma and Paulus found this interesting and also came by. Irma was impressed by the experience stories.”

Anita and Irma had more and more contact. Anita also went to the Parkinson Café in Delft once and because they both worked for a Parkinson's café, they were immediately able to exchange things with each other.

Anita: “Irma also went abseiling from the Euromast at the time and immediately raised money for the Parkinson's Association. That's how we got the idea to do something together, but unfortunately that never came to fruition.”

In 2019, Irma went to watch the Nijmegen 'Vierdaagse’, in which Anita participated, and gave her a gladiolus. Anita was very surprised and wanted to stop for a moment to talk to Irma and Paulus, but the people she was walking with said: “Come on, Anita, just keep walking and we will be there in a moment.” Anita: “I still regret that I didn't stop to talk to Irma and Paulus.”

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ANITA

Anita: “We talk all evening and then we don't speak to each other for a long time. But when I see Irma again, it's so nice to see her again.”

Parkinson Friends for life

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"Cue2Walk: Day in, day out, we are committed to maximizing the freedom of movement of people with Parkinson's."

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The Cue2Walk Floor: “The idea for the Cue2Walk literally emerged in practice in 2012. At the time, healthcare professionals at Sophia Revalidatie (now Basalt Revalidatie) already applied scientifically proven effective cueing in therapy to support people with Parkinson's when they experienced a Freeze. However, together with a group of people with Parkinson's, they also saw that it was extremely difficult for people with Parkinson's to apply this strategy independently at home. The aids available at the time either offered cueing continuously (such as a metronome), which leads to habituation/adaptation, or had to be operated manually, which people with Parkinson's are not always able to do.

In collaboration with The Hague University of Applied Sciences, a project was started to automatically apply cueing when people experience a freeze so that people with Parkinson's can also use it at home. This project resulted in a first prototype with potential, but the idea (as often happens) ended up on the shelf.

Four years later, in 2016, the founders of Cue2Walk International picked up the project again. We wanted to test whether the idea was still relevant and to validate whether there was still a need for it, we participated in the ParkinsonNet Innovation Award. This prize was awarded by the entire Parkinson's sector (ParkinsonNet, patient association and ParkinsonNL) to projects with the potential to make an impact on the quality of life of people with Parkinson's. This prize was won and that was the starting signal for the development of the current device.

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The development was certainly not easy. It immediately became clear that it is very complicated to recognize a freeze. The nature of the condition means that a large number of factors influence the expression of a symptom such as freezing. This became clear in the first major study by Cue2Walk International.

Thirty people with Parkinson's were asked to come to Basalt's walking lab so that it could be investigated what the movement signal of a symptom such as freezing looks like and where this could best be measured. In total, not one freeze was measured that day. When people are 'excited' and in a new environment, symptoms are not expressed or are expressed differently, making it very difficult to conduct research into this symptom.

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From that moment on it was clear that the development and research process had to take place in people's homes. Research at home was still quite unusual in science at the time. Everyone's home situation is different.

Nevertheless, we managed to come up with a product that works well in this situation. We could not have done this without the expertise of knowledge institutions such as Radboud University Medical Center and Amsterdam UMC. We actively collaborate with both to combine research and knowledge from practice. Furthermore, this approach has meant that the Cue2Walk has a personal setting for each user, in order to adapt to the user's specific home situation.

Further development of Cue2Walk?

Floor: “Our device has been available to people in the Netherlands for over a year now and we continue to work continuously on refining our product and better tailoring it to the needs of users. We have learned a lot from what works and what doesn't in recent times.”

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“We know that it is important that people practice with it themselves for the best results. Of course they are supported in this by us and their regular therapist. The promise we make is that if people actively use the device for 3 weeks, they will experience freezing less often, for less time and less intensely. That gives people more confidence, more freedom of movement and more independence.”

And a renewed website Floor: “Yes, that's right, the information on the website about the Cue2Walk is now more aimed at people who want to use the product or are interested in it.”

Share information about the Cue2Walk Floor: “We like to share our knowledge and insights with people who are interested in it. For example, we train therapists throughout the country in the use of the Cue2Walk. We explain what works and what doesn't, and demonstrate this through examples. “

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We now also visit Parkinson's cafés to tell our story and present the Cue2Walk. If people want this at their Parkinson Café, they can contact us.”

Cue2Walk will give a presentation at the following Parkinson's cafés or Elderly Associations in the near future. If you are interested and have the time, please register with the relevant Parkinson Café or Elderly Association.

October 24, 2023: Chaam Elderly Association November 10, 2023: Parkinson Cafe Landgraaf January 9, 2024: Parkinson Cafe Almere

How do people get a Cue2Walk?

Floor: “In principle, we always measure the device with the person's regular practitioner. This is usually a physiotherapist, but it can also be an exercise or occupational therapist. In addition, people can also complete an intake questionnaire themselves via the website. One working day later you will receive personal advice from us whether the Cue2Walk is a suitable device for you. If it turns out that this is the case, we will schedule a meeting with their practitioner and start the process.“

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Would you like to measure the Cue2Walk yourself?

Floor: “We are busy developing an application to ensure that people can also use the device independently. This app offers people who want to do so the opportunity to carry out measurements at a time and location of their choice. In addition, they are also given exercises to learn to use the device better. This means that people experience more control over the process and are less dependent on others. Of course, this can also be done with their practitioner, but the choice whether they fit the device independently or with guidance is then up to them.”

Would you like to know more about how the Cue2Walk can help you prevent or break through walking disturbances, so that you experience as much freedom of movement as possible? Take a look at the website and complete the intake form without obligation to see whether the device is a suitable aid.

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Moving forward through collaboration Floor: “We strongly believe in collaboration with all the different parties, users and knowledge institutions in the Netherlands. Only by working together can we take the necessary steps. And we remain committed to improving Cue2Walk and helping more people.”

Thank you, Floor, for this wonderful interview and your sponsorship of the Woman and Parkinson's event.

Keep me informed of further developments of Cue2Walk.

I also came across this dog on the site. Go see for yourself!

Click here for the website

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Wendy van Wijk-Lugthart has been diagnosed with Parkinson's since she was 47 (2017). How wonderful it is to develop an online magazine with stories and articles for her fellow sufferers. Wendy puts together the magazine, interviews the people, writes the stories and turns it into a beautiful magazine. Together we can create a beautiful magazine that is of value to many people.

It creates connection and it is nice to read other people's stories.

This magazine also fits very well with the lifestyle of people with Parkinson's. How can you live well with Parkinson's and how can we motivate each other. Do the things that make you happy. That will give you more than fighting or kicking it.

Think for yourself what do I live for and what things can I still do that are so important to me and make my life more beautiful.

COLOPHON Questions, compliments, complaints or spotted an error?

For tips, requesting an interview, submitting articles or placing an advertisement.

Email to info@jowija.nl WENDY'S PARKINSON JOURNEY ENJOY LIFE. is part of: Jowija Marketing & Events.

Disclaimer: 'Wendy'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 could arise from the use of the information offered here.

No rights or claims can be derived in any way from the content of this magazine of Wendy's Parkinson Journey Enjoy Life.

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Enjoy life

Thanks sponsors Recreatiepark De Dikkenberg - Café Schaapskooi De Dikkenberg - Boston Scientific - Cue2Walk - Rock Steady Boxing

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