Wendy's Parkinson Journey Enjoy Life - 7 - 2024

Wendy's Parkinson Journey

Enjoy life

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ourney nJ

Wendy's

Together, you can achieve more!

By Wendy van Wijk www.wendySparkinson.com

Click on an article

Wendy says

INTERVIEW: Paul van Wijnen Woman & Parkinson Event 2024 INTERVIEW: Jose Julio Delgado (ambassador) Rene van Helsdingen Launch "Gift of life” - Van Helsdingen Trio Just call Janneke Golf events - Parkinson2Beat INTERVIEW: UwVerzuimregisseur (NL) I= INTERVIEW: Flora PDavengers - World Parkinson's Day I=

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Poetry for Parkinson's

"Wendy speaks" !

Magazine no. 7, which you waited for patiently, is finally here and definitely worth the wait!

This edition features 3 insightful interviews with individuals also living with Parkinson's, which have garnered heartwarming feedback from readers. Comments like 'that's me' and 'wow, how relatable, it's like I wrote it myself' have been flooding in.

UwVerzuimregisseur and their 5-years anniversary. I interviewed Reinout, the CEO, and they were enthusiasticly about the article I made.

Additionally, enjoy some engaging articles from PDavengers, the 'Poetry for Parkinson' competition, and a blog by Janneke den Ouden. There's also an article about Rene van Helsdingen, the jazz pianist.

I gifted all of you this online magazine for two years, but producing this wonderful magazine incurs costs. This includes expenses for the website, magazine creation, publishing, and more.

You can now opt for an annual subscription or purchase per issue at a slightly higher price.

Click here to visit the webshop.

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Ambassadors

Wendy's Parkinson Journey When Wendy was diagnosed with Parkinson's at the age of 47, she was the mother of 2 young children and did not give up. Like other women with Parkinson's, Wendy has found a way to deal with Parkinson's, where connection is an important factor, with fellow parkies and interested parties, namely, setting up her own Magazine, Wendy's Parkinson Journey.

Wendy started from her own financial resources, and hoped that there were sponsors who would help finance this beautiful magazine, not knowing at the time that it would become such a success, even internationally. Wendy also gave away a number of physical magazines, which also entailed some costs. The strength of this online magazine is that it not only contains interviews, important research regarding Parkinson's, and blogs, but also links to media and social media to listen to and read.

There has been a call for a voluntary contribution, which was responded to, but this is without obligation and no longer covers costs. For a small amount you can now take out a subscription to continue reading the magazine online, with now even an offer for the 3 magazines that will be released in 2024. If you do not want a subscription, you can also order per online magazine in due course, but then the costs are slightly higher.

To subscribe, you can place an order via www.jowija.nl.

As an ambassador of Wendy's Parkinson Journey, I sincerely hope that many who already read the magazine are willing to make this contribution, so that the magazine can continue to be published and expanded with even more interesting articles.

Els Haring-Ruigrok - Ambassador Wendy's Parkinson Journey

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Ambassador Wendy's Parkinson's Journey Jose Julio Delgado

Facebookgroup Living with parkinson daily. Live.

My name is Jose Julio and in 2010 I was diagnosed with Parkinson's disease. As the founder and CEO of the international Facebook group 'Living with Parkinson Daily', I have met and worked with many people from all over the world. When I met Wendy, we immediately shared our goal of raising awareness. In this magazine you will find countless wonderful and inspiring stories about people with the disease Parkinson's worldwide. Wendy has the knowledge to connect everything and create something beautiful like this magazine. Subscribing is essential to support this magazine. I feel honored to be an ambassador of this project. We want to create more awareness with our stories. In this magazine you will find valuable information. I stand for Parkinson's awareness and encourage a subscription to Wendy's magazine.

Students from UMC Utrecht responded enthusiastically to my presentation. I was asked to share my story as a Parkinson's patient, but also to talk about my magazine and my initiative for the Woman and Parkinson's event. It's a wonderful thing to do something that brings you satisfaction while also creating something beautiful for others living with this disease, and most importantly, spreading more positivity. Good to tell you what is still possible with Parkinson's.

Wendy van Wijk

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Paul : "With a strong sense of passion, I push forward enthusiastically, even while dealing with Parkinson's!"

On a beautiful sunny morning I drive towards Rotterdam to meet Paul van Wijnen. At the age of 34, Paul was diagnosed with Parkinson's, which was now 9 years ago. That's very young, Paul! I had already heard that he is a training actor and has founded his own company 'Bureau Plaats Delict'. I didn't know the whole story before I met him that day, otherwise I would never have expected to find such a calm and friendly young man at the door. Paul is an inspiring person who is full of passion for life.

Paul, now 43 years old, commenced his adventurous career in Rotterdam Rijnmond as a police officer. However, his life took a dramatic turn during a perilous chase when he landed on a car, then on the towbar, and was dragged behind the car. "I lay there, unable to move, and thought: this is it, I'm going to die." Thankfully, he was rescued, but this traumatic incident resulted in him developing posttraumatic stress disorder (PTSD).

Following this ordeal, he resigned from the force and transitioned to working in a youth detention center

He wanted to gain experience from another perspective by working as an educational staff member.

Initially drawn to the commercial aspect, he pursued economics studies and later served as a project manager for half a year. Following this role, he spent another six months as an account manager at CWS in Amsterdam. Subsequently, he co-founded a social media assistance company, SMS van Wijnen, with his sister. Due to intense competition, they made the tough decision to cease operations.

His sister then transitioned to a marketing role at a construction firm.

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Out of necessity, Paul initially joined the police academy as a training actor, mainly in Ossendrecht with the specialist units. However, he enjoyed it so much that he eventually pursued it as a full-time career. "We had an amazing time." He also worked for the "ME”. The quest to find his true calling has been a recurring theme in his life.

Now, he has discovered his passion through his own company, 'Bureau Plaats Delict', offering services such as aggression training, intervention team training, dealing with undesirable behavior training, hostage and robbery training, aftercare, and shelter.

If you are facing challenges in your workplace, Paul is the ideal trainer to learn from. Drawing from his extensive experience in the police and riot control, he brings valuable insights to sectors such as municipalities, healthcare, hospitals, catering, and retail. Paul possesses the expertise to effectively guide you in handling these situations. Participants in Paul's training sessions consistently show great enthusiasm and satisfaction.

If I had known this story earlier, I would have anticipated a different Paul at the door. When I entered his house, he apologized for being “off”, explaining that he had recently undergone DBS surgery (DBS = deep brain stimulation) and was still in the process of adjusting.

I mentioned, "There's no need to apologize to me; I also have Parkinson's, so we can relate to each other." Paul responded, "Yes, it's silly. I was always hesitant to disclose my Parkinson's condition. I refrained from sharing my illness with others for a long time, and I know just a few people with Parkinson's. Only recently I have made it known publicly, and I still feel uncertain, which is why I apologized for not being fully present. You're correct; you also have Parkinson's, so we're essentially in the same boat."

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The diagnosis "As an trainingactor at the police academy, I practiced combat techniques, using my wrists and elbows for defense. Despite the usual joint aches from these exercises, the discomfort usually subsided.

However, this time was different, prompting me to seek medical attention." Initially, Paul suspected nerve damage and sought relief through physiotherapy, but unfortunately, this approach was unsuccessful. "I carried on for a few more months, hoping it would resolve on its own." When it didn't, he revisited the doctor who then recommended further tests at the hospital. An MRI and a DAT scan were conducted. The neurologist expressed doubt about the possibility of Parkinson's due to his young age and

strength. Following a referral to Erasmus, where the diagnosis was confirmed. Subsequently he visited Bart Post in Radboud, Nijmegen. The progression of the condition is gradual, and detailed information about the disease was provided. The doctor attentively considered the patient's preferences, and their shared interest in sports created an instant connection. The peaceful atmosphere at Radboud contrasts with the bustling environment of hospitals in Rotterdam, providing a serene experience. The patient highly recommends seeking treatment at Radboud for a calmer and more tranquil experience.

To work "After getting the DBS installed, I had "Work is my passion, and I can't picture to pause my work for a bit, but now life without it. I'm excited about I'm prepared to resume. It's important working 60 hours a week once more. If to note that the DBS isn't the final work brings you joy, embrace it. Going solution, as some may believe. To me, to work is amazing, I truly love what I it's truly a helpful tool that simplifies do. It energizes me. I'm enthusiastic life. Even before the DBS, I managed about returning to work. Being to accomplish a great deal. This device occupied with my work feels fulfilling, brings a sense of calm to my mind. I'm and I like to take short breaks to already capable of achieving much refresh." more than before."

"Even though work can be exhausting, it energizes and rejuvenates me. Spending 60 hours working doesn't weigh me down; instead, it feels rewarding to pursue my passion. Additionally, I want to donate 5% of the training proceeds to a Parkinson's-related charity. It's my way of giving back and making a difference."

Lifestyle “Maintaining a balanced lifestyle is crucial. To sustain well-being and appreciate life, I believe in moderation. Indulging in fries occasionally is acceptable, but not daily.

It's not necessary to completely deprive yourself; pleasure is essential too. Enjoying a glass of wine on the weekend is acceptable, as long as it's done in moderation. Listen to your body and act accordingly.

Just scale back a bit on everything.”

"If individuals treat you differently due to your Parkinson's, reflect on it thoughtfully. If their behavior makes you uneasy, consider reducing their presence in your life. Surround yourself only with those who bring you joy. Recognize what is troubling you, establish boundaries, and tackle issues promptly. Don't allow others to take advantage of you! By confronting challenges directly, you prevent them from escalating.

It's crucial for me to have a connection with the people around me. Finding common ground is key."

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You are amazing and unique!

"I haven't always been as positive as I am now. I've had my low moments and took part in group therapy. The main takeaway was 'it is what it is.'

Hearing it repeatedly can make you start believing it, allowing you to justify everything. So, if I feel down today, I can just accept it as it is.

Fortunately, I have found my own positive mindset, I was able to overcome challenges on my own. If you repeat to yourself that you can do something a hundred times a day, you'll eventually believe it. This technique proved effective, even during my time in criminal investigation. Repetition can influence your thoughts. Remind yourself daily that you are amazing and unique, and pursue your goals. This mindset will reflect in how you feel about yourself."

Now enjoy!

"I am deeply passionate about my work, as you are aware. Additionally, I am constantly engaged in sports activities. I enjoy mountain biking, scootering, skateboarding, and snowboarding.

Sports are an integral part of who I am, bringing me immense joy. I also tend to opt for active holidays, which we frequently partake in."

"It was a delightful experience mountain biking in the Sierra Nevada, near Granada in Spain. Recently, I went snowboarding in Switzerland and am planning a trip to either Lisbon or Rome in April. In the summer, we enjoy walking, cycling, and taking boat trips. Whether it's just a canoe ride, when I am a meter from the shore, being on the water it feels like entering a different world. The beauty of the sea, the beach, and the pleasant weather are all things we cherish. My partner is even more athletic, participating in marathons. Fortunately, I can still pursue these activities while balancing them with my job – a perfect combination for me."

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You're getting married!

"Absolutely! Last year marked a significant milestone in my life as I got engaged for the first time. Over the holidays, I proposed, and she happily accepted! I met this amazing woman three years ago. Initially, I took my time before dealing my disease, wanting to strengthen our connection first. Our love grew immensely, and after a month, I finally shared my disease with her. Her understanding response brought me great joy. Currently, we are house-hunting together and preparing to move in soon. Our wedding day is set for September."

! e v o L

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Wise advice

"It’s important to have achievable goals to strive for. I currently feel incredibly fortunate. I am soon going to marry my sweetheart, and we plan to search for a home and a furry companion. These are all wonderful things. I am very optimistic about what lies ahead. I invested in brand new sports equipment last year, ensuring its use for a long time. I focus on positivity and keep negativity at bay as it adds no value to my life.

Surround yourself with happiness that you create. Seize control of your life and attentively listen to your body. Lifestyle holds great significance."

The magazine "I think this initiative is truly wonderful and inspiring. Your passion is particularly motivating. Stay focused and keep moving forward; good things are bound to come your way."

Continuously keep moving forward and approach everything with moderation. This way, you'll find more enjoyment in what you do. Take pleasure in the small things that surround you. It may sound simple, but it holds true.

Paul, it was a pleasure meeting you and thank you for sharing your story.

Wishing you and your future wife a fantastic day in September!

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www.dedikkenberg.nl MAIN SPONSOR Woman and Parkinson's event

Welcome to De Dikkenberg

Make your dream come true at De Dikkenberg YOUR holiday home in recreation park 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

Check out our wideranging menu for lunch, dinner, or a quick snack.

De Schaapskooi Something to Suit Everyone

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w o n k y d a e r l a u o y ? o s l D E r o d a s s a b m A r u o Els: “More attention for women with Parkinson's.

So important!

I am happy to commit myself to that!”

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rney u o J 's n kinso r a P 's y Wend r o d a s s Amba

'It is time that women with Parkinson's also receive the attention they deserve. But during Woman & Parkinson I especially want to see all women shine. Then my day is a success.'

Woman & Parkinson Event May 31, 2024 Recreation park De Dikkenberg Bennekom Looking back at Woman & Parkinson Event 2023 Anita: "It was fantastic. We met at a beautiful location and the atmosphere was so relaxed and cozy. I met a lot of new faces and enjoyed this day."

Wendy: “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!”

Saskia: “Fiddle with your hair and get make-up done, great fun!”

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Eight women with Parkinson's organize Woman & Parkinson Event 2024

Wendy, Samantha, Els, Esther, Dominique, Kaja, Eva and Larissa, all women who have Parkinson's themselves, are happy to organize a day for women who also live with this disease. The Woman & Parkinson's event is specially designed to inspire, pamper and connect (young) women with Parkinson's disease. 'During the first edition it became clear how great the need is for more attention for women with Parkinson's.

Everyone immediately asked for a second edition. This year we're going even bigger. The theme is happiness with speakers Guy van Liemt and Annelien Duits. Participants can follow inspiring workshops, participate in various forms of exercise - including yoga - and this year there will also be a make-up artist present who helps the women become the most beautiful versions of themselves.

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Guy van Liemt Happiness expert

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The Speakers GUY VAN LIEMT

Guy van Liemt is a happiness expert and business economist (formerly P&G and Unilever), was one of the founders of Erasmus Happiness Economics Research Organization (EHERO) and was its director for 10 years. His main goal is to inspire people and organizations to create space for happiness. Happiness is the extent to which you feel comfortable and satisfied with your life.

Guy: “Happiness is not always the same as pleasure. A pleasant experience is something temporary, while there are also more lasting forms of happiness. Such as life satisfaction, which revolves around well-being and quality of life. This includes *all* areas of life. Your health, work, finances, but also family, social relationships, meaning and spirituality. And that includes all emotions, positive and negative. Not just as it is, but especially as you experience it yourself.

You can influence this. Sadness is part of life and is therefore part of happiness. Gratitude can be an important life skill to increase the quality of life as you experience it.”

The Speakers ANNELIEN DUITS

Annelien Duits is a clinical neuropsychologist: "In our research we are looking at how you can live well with Parkinson's and how you can motivate people. Parkinson's is simply there, with all the disadvantages, you can fight against it, but that will do you no good. and takes a lot of energy. You can also look differently. What do I live for and how can I still enjoy things that are important to me.”

Watch this broadcast with Annelien Duits about Acceptance & Commitment Therapy (ACT): various exercises that help patients learn to deal with unpleasant things. Because those feelings are given a place, it becomes easier to enjoy the things that are still going well.

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Annelien German Annelien Duits 22 Clinical Neuropsychologist

registration for Volunteer Awards 2024 Woman & Parkinson Event

Listen to the interview with Jose Julio Delgado, Wendy's Parkinson Journey Ambassador, at www.radioparkies.com.

To listen to the interview click here.

Visit the Radioparkies website by clicking here.

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"You ar e not alone!"

Jose Julio D elgad diagn o (58 osed ) at his 44th 24

Jose is founder of the Facebook group “Living with Parkinson daily. Live.”

A group where you can ask your questions, tell your stories and attend the Living with Parkinson daily. Live. Zoom. For the past three years, Jose hosted weekly Saturday zoom presentations. Jose: "We are all fighting the same battle."

Aneice Farrer WA State, USA : “Jose Julio has created a safe place for people with PD to meet other PWP from around the world, which is positive, upbeat, educational & supportive. Jose implemented a weekly zoom meeting, which is presented by a variety of professionals & PWP who provide valuable education, to help us understand how PD affects the entire body, & ways to help manage our symptoms. PWP share their daily PD challenges as well as their experiences trying out new activities, exercises, hobbies, creating art, music, writing poetry & inspirational books about their PD journeys & most importantly, they are Living their Lives, despite the challenges of living with PD. Jose works tirelessly to encourage members to keep active & moving, to maintain a positive outlook, and to increase PD Awareness. He truly cares about the members in the group, he wants the best for all of us, so we know we are not alone, we are all part of this Parkinson’s family.”

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Diagnosis Jose Julio: “I still remember being weak on my right hand and right leg when I was 11 years old and started playing soccer. It was then that I realized my right leg was weak and I could only kick the ball softly and without direction. They made fun of me for it and said I kicked the ball like a lady. Despite their ridicule, I continued playing soccer until I was 21, always kicking the ball like a lady. However, I also faced the same issue with my right hand when I played volleyball. At the time, I had no pain and did not visit a doctor. As a South American, only wealthy people visit doctors while the poor go to work. I had never even heard of Parkinson's disease.”

“In 1995, I moved to California, a state in the USA, which was a completely different world for me. As an immigrant, I had to take any job I could find. My weakness in my right hand and leg was immediately noticeable, but I still didn't go to the doctor.

I thought going to work would fix everything. In 2003, I had my first doctor's visit, and the physician diagnosed me with carpal tunnel syndrome. He wanted to perform surgery to cut the nerves, but I declined and decided to use a brace and keep working. Regarding my leg, I saw an orthopedic doctor who recommended special shoes.”

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Jose Julio is the proud father of his two sons Alonso and Sebastian and grandfather of five.

Jose's life took a significant turn from being a successful businessman owning three Domino's Pizza franchises to face the challenges of Parkinson's.

“The doctor said while I was entering his room: ‘You have Parkinson’s. I was 44 years old!” Jose Julio entered into a period of depression and anxiety.

“Although I was a successful businessman, I lost my motivation and fell into a deep depression for about three years until I accepted my condition.

Then, in 2017, my second divorce broke me into two pieces, and I felt like I was losing my support.” His second divorce left him emotional restless, and he was wondering: “What the hell am I doing here, I don’t belong here”, ”I was into a dark tunnel without hope. I was depressed, it was hard for me to accept I lost everything, I lost my self and had no longer hope.”

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My doctor recommended a consultation for Deep Brain Stimulation (DBS), after a year I decided to go for it, and it was one of the best decisions I ever made. However, DBS did not fix all of my problems, and that's when I found Jesus Christ as my Lord and Savior. Through Him, my heart was restored, and I found purpose in helping others.

During one of my church visits, I prayed for guidance and suddenly felt an electric shock run through my body. I heard a voice in my head say, "You are not alone." Moved by this experience, I opened a Facebook group called "Living with Parkinson daily.Live" to connect with people around the world facing similar struggles. Despite facing challenges and being kicked out of Facebook several times, our group has grown to 825 members from various countries such as Iceland, the UK, The Netherlands, Italy, Africa, South Korea, Kosovo, Russia, Ukraine, Brazil, Mexico, Chile, Pakistan, India, Afghanistan, Australia, and other countries. We offer each other support, encouragement, and a sense of belonging.

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“Special activities on "Living with Parkinson daily. Live.”

Join Our Facebook Group and Step Towards Progress Together! We have an activity called "Step by Step" every Tuesday. Members come together for a walk and count their steps. The more people counting their steps, the higher the number will be! Let's inspire each other. On Saturdays, we meet on Zoom to hear from different speakers who share their testimonies and discuss various topics. Through these Zoom meetings, we continue to learn from experts and connect with new friends from all over the world. The group has also provided a platform for me to start writing, and I am thrilled to receive positive feedback. It's an honor to be a part of this supportive and inclusive community. I am committed to reaching out to more people like us, who are everywhere, with the support of my biggest ally, God.

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Poem by Jose Julio: My friend Parkinson.....

When I met you, I was scared. When the Specialist Neurologist introduces us I was scared. He said only bad things about you, he describe how you will kill me day by day. My family, friends and everyone feel sorry about me. I went into a depression stage, you came to destroy my life, live with you is impossible.

I hate you.

It’s been 11 years since that horrible day when I met you. It’s been an adventure trying different medication, possible cure I try too I have to study you to know more about you. If we are going to live together till our last day I need to know more about you, and only I can say is thank you my friend.

Because you I eat better than ever, drinking only water. No smoking, no drugs, no alcohol. I eat and drink healthy taking care of my self. Because you I have a life style and schedule to live organized, time to eat, sleep, exercise, tv, friends.

Everything is better for me Because you I realized who are my real friends, family. Who really love me, who is with me in my off time. Because of you I met thousands of real people, friends, brothers and sisters. People with whom we have something in common, You. Because you we can understand each other. Because you, I meet interesting people in Kenya, Uganda, Zambia, Nigeria, Spain, Italy, Germany, France, Andorr, UKRAINE, UK, Netherlands, Australia, Austria, India, Pakistan, Iran, Chile, Brazil, Argentina, Peru, El Salvador. Canada, China, Indonesia, England, Iceland, Wales, Denmark, Cameroon, republican Dominicana, Puerto Rico Ghana Romania, Mexico, USA, Mongolia, Kosovo, Slovensk, South Korea, Ethiopia, Scotland, South Africa, Iran, Sweden,Lebanon, Philippines, Poland, Vietnam Because you I’m pretty sure I meet already or I will meet the woman of my life.

Because you people love me and I love people.

The more important thing my friend, because you I came close to God and I meet Jesus. Soon or later I won’t need this body you can take because when I go to heaven I won’t need it. I can spend hours and hours talking about wonderful way how you change my life for good Because I know you I will tell others how live is with you Good night my friend tomorrow I will beat you again.

Join us with “Step by Step” It's time to inspire one another to take a walk with family, friends, and your pets. Step by Step is a weekly event that takes place every Tuesday. It's an online event, you can join where ever you want and let's break our previous record for the most steps taken together. By counting our steps together, we can motivate each other to stay healthy.

Mark your calendars and make Tuesday your walking day. Together, we can achieve anything. We're all in this together!

Thanks to your support, we have set the highest record of 2,332,033 steps in 1 single day.

Let's keep the world moving!

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Jose Julio I met this Latin American Dynamo during Covid. We both belonged to an international zoom group out of Knoxville. After Covid , I joined Jose’s, Saturday Group. You will not find a more caring or Passionate person. Jose freely gives himself to better the lives of those diagnosed with Parkinson’s. It’s people like Jose that make a life with Parkinson’s bearable.

Ian Robertson Broderick, Saskatchewan Canada

“Jose Julio is a great person with a big heart and soul. In terms of Parkinson, he connects people with Parkinson with each other across the world.

He launched huge programs that help Parkinson's patients more comfortable in their daily lives. He is also very helpful and caring. He has given me the opportunity to communicate with his followers base on social media and I will never thank him enough for that!“

Mariam Bennouna - England

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STAY POSITIVE By following his dedicated 10 medication schedule and observing how Parkinson's reacts to various factors, Jose proactively manages his condition while staying positive and connected with others.

Maintaining a positive outlook is essential, and for me, prayer is a powerful tool. As a firm believer, I find the Bible to be a great source of guidance, and I pray regularly. Whenever I face emotional situations, I meditate with God. He remains optimistic about advancements in medical technology, regularly attending clinics and keeping up-to-date on the latest developments.

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Living with Parkinsons Daily is like a big family and we have made so many friends all over the world in this group. We love the zoom presentations on Saturday with Anne Fribbens, the Parkinson nurse and Ian our exercising and advocating …..

Without groups like this some would be very lonely and has a place to be heard 24/7.

tter o c S hn o J d an nd n a l a t s o u c S S

Jose Julio, lives with Parkinson's, fighting every day for himself and others. He puts other before himself, making sure they have support. He has his own Parkinson's site, daily being there, for the many worldwide, he supports. Behind the scenes... He suffers, wearing always, a smiling mask of support. His site flows with supporting Parkinson's people of all races and countries, it is a friend, that never leaves in its support.

God Bless Him. Janice USA

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I have learned so much, and have new friends that understand what I am going through. It is a very special support group. And, what is so amazing is that people drop in from different states and countries.

Margo Van Den Berg Arizona USA

Special Friends

Accepting my Parkinson's diagnosis has been the most important step in my journey. I pay close attention to how Parkinson's reacts to various stimuli, such as food, emotions, and other factors. Consequently, I follow a regular medication schedule and avoid activities or foods that I know will affect me.

I met Diane 5 years ago on the day this picture is made.

She became a dear friend to me. We have shared many adventures and created unforgettable memories together.

It's comforting to have a friend who understands you so well and can be there for you during challenging times.

Diane “We started with 8 in the group and has grown now to 825 members from all over the world. You learn so much in this group and meet a lot of people. Julio, the leader of the group, does so much for us.” Diane.

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“This magazine I find amazing. You should share it all over the world.

This magazine will be liked by many people. It looks great with the colours and the beautiful pictures. “ ANNE FRIBBENS, special guest on Living with Parkinson daily. Live. Anne is a Parkinson's disease nurse specialist for around 30 years: Being able to reach out to so many, living so far and wide is an honour.

The groups allows us to have open discussion on how Parkinsons affects them living with it but also their families, their colleagues and often very young children.

PWP often feel alone and isolated. Hopeless scared and confused.

Parkinsons is incurable, we have no cure, but being part of the group give them hope. inspiration, empowerment, but most of all they never need to feel alone again. Jose lives with Parkinson's and understands much more than any scientist or allied professional what it is like on a daily basis living with Parkinson's. My expertise in this field hasn't come from books but from both PWP and their families. Without groups like “living with Parkinson daily” our expertise would be limited to what we learn from books. Finally Jose is committed in bringing together people from around the world living with Parkinson's so we can all share their expertise and share great tips on how to survive Parkinson's on an every day basis.

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Jerusalema Dance challenge with parkinson people all over the world!

Domino's pizza llc make this for me i was elected manager of the yea

Jose was elected Manager of the year -Domino's Pizza

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n e g in d ls e H n a v e n e R Since he was young, Rene has been immersed in the world of jazz music! Through his enchanting piano melodies, he has captivated audiences worldwide, from Europe and America to Asia.

"One day I will be famous." Tune in to the inspirational interview with Rene on jazzhelden.nl, as he recounts his life journey and demonstrates his ongoing dedication to his passion as a jazz pianist while facing Parkinson's disease.

Click here to go to the jazz heroes website for the interview with Rene.

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Rene is currently collaborating with an Italian producer to record a vinyl LP, how nostalgic! Side A, titled 'Fraction', delves into themes of pain, inner turmoil, and the neglect of our environment. On the other hand, Side B, 'Healing', centers on growth and renewal. The entire recording spans two clips, totaling around 70 minutes.

However, the final version will be condensed to 45 minutes.

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The heartwarming bond between two individuals living with Parkinson's disease inspired the creation of the album "The Gift of Life".

Back in 2018, renowned jazz artist Rene van Helsdingen received his Parkinson's diagnosis. Despite the obstacles, he stayed true to his love for jazz and kept playing. In Amsterdam, he crossed paths with Mark Edward Fuller, a fellow jazz lover also living with Parkinson's, and they soon became close friends. United by their mutual admiration for jazz and poetry, they collaborated on the creation of the enchanting album titled 'The Gift of Life'.

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L A U NCH

AL Bu M

Rene van Helsdingen Trio The Gift of Life Text: Mark Edward Fuller

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The gift of life - this album is all about life with Parkinson's.

Mark Edward Fuller wrote the lyrics, while Lain Barbier's stunning and authentic vocals brought them to life.

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Amsterdam 8 december 2023

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Can be listened to on Spotify or YouTube

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IN DE JAZZ ETALAGE (For Rien) IN DE JAZZ ETALAGE The music is cool and sweet Giving rise to groovy smiles Above toetapping feet IN DE JAZZ ETALAGE The vibes are really good Inspiring artistic freedom, friendship and love IN DE JAZZ ETALAGE The light is warm and bright A star in the darkness Of an Amsterdam night.

IN DE JAZZ ETALAGE The music never dies Sound waves go on forever Free of our mortal ties

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Mark Edward Fuller (December 2019)

Just call call Janneke Janneke Just It's all my own fault Today I have a busy day ahead and a birthday party is planned for the evening. Not a very convenient combination. The days, no, the weeks are full of appointments. As agenda manager, I am responsible for this myself. Someday I'll do that better.

Really and truly.

At the end of the day I am exhausted and go 'off' again. I've been having that almost every afternoon lately. It doesn't make any difference whether I rest or continue. I dread the evening and after an hour of lying down I drag myself to the mirror. The sight of me certainly doesn't make me happy. I just make a funny face at myself and do my best to make something of it. That doesn't really work, but a smile will certainly make it acceptable and today won't get any better than that. A little later, my husband and I get on our bikes and paddle to the birthday party, very late.

The welcome is warm and I immediately cheer up.

'How nice that you are here. You've had such a busy day."

Of course we are there, I say, a promise is a promise.

The fun is quickly lost when I am told that it is entirely my own fault that I have Parkinson's because I don't eat meat. Now the woman who made this bold statement has been attributing everything that is not going well in my life to not consuming meat for years. I can usually deal with this well because she also has qualities that somewhat compensate for this evil trait. But tonight I could be having a really bad time.

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Just call Janneke

I answer that I sincerely regret that she did not come to my lecture last week about my book ‘Dagboek van een triller’, even though I had invited her no fewer than three times. This is because I had repeatedly noticed that she knows very little about the disease, but is full of prejudices. I emphasize it once again: It's a real shame that you didn't respond to it.

Well, I worded that nicely but clearly.

Just as I'm sitting back with satisfaction, I hear: 'It can't be that bad otherwise you wouldn't be here.' This hits me incredibly hard. I get up and mumble that I really don't feel like doing this and go stand somewhere else. The daughter of the house, who has MS herself, comes to stand next to me and tells me that I should close myself off to these kinds of comments.

She does that herself and with success.

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So I am clearly not successful at this, I answer and we laugh. We are talking about idiotic prejudices and the tension falls away from me. How could all those people who do eat meat have Parkinson's?

Yet the comments linger and keep coming back, no matter what I do to stop them. Quite strange because I receive a lot of positive comments, piles of sweet emails and countless sweet reactions on Facebook about what my book or lecture means to people. All it takes is one comment on the birthday to wipe away all those positive expressions. There is work to be done there, I really have to do something about it. I'm going to do that as soon as I know how I'm going to do it.

Just call Janneke

I'll tell my husband. The husband of the self-proclaimed Parkinson's expert is his best friend. Hubby waves it away and tells me not to worry about it.

Hubby never gets angry about these kinds of comments. I do. I think I want him to be angry about it too.

The next day in the morning I walk hunched over, taking small steps and shuffling through the house. How miserable I am. I hate the sound my feet make. Hubby goes out with a friend to our southern neighbors to score special beers. He enjoys that immensely and I wish him this very much. I try to wave him goodbye as cheerfully as possible. With an incredible amount of effort I write three Christmas cards, take a shower and get dressed. Early in the afternoon the husband is back and proudly carries in a crate full of specially brewed delicacies.

How was it?

Very nice!

Is there any news, what have you talked about?

About nothing. We only talked about the lighthearted things in life.

Why does this feel like a harsh rejection? Probably because I had hoped he would have spoken to his friend about his wife's hurtful words.

When I say that, his answer is that I can do it much better myself than he can. Communication is my thing, he's bad at it.

What did you do this morning?

Survival, I mutter. He looks at me questioningly. I have written three Christmas cards, I say as I continue to move around the room with shuffling steps.

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Just call Janneke

Ah, have you also been on the treadmill? He looks at me beamingly for a moment while he puts his beers on the table. He really isn't good with words. Every bird sings according to its beak. I talk myself into courage.

Tomorrow will be better, really.

Tomorrow it will be better and then I'll slap him.

I have to vomit. It really is a crazy day. If I were not so miserable, I would now drink wine and try to drown Mr. P. in it.

But I stick to water. I become overly mobile. What a day.

I drop the water glass from my hands.

Béng, in a hundred pieces on the tiled floor.

The glass was empty.

I'm lucky this time ;-)

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On the road. First visited eetcafe De Schaapskooi at the De Dikkenberg recreation park and Samantha Vizentin to discuss the women and Parkinson's event, which will take place on May 31. The sun was already shining nicely this morning. Is that an omen for May 31st? Would be fantastic.

Then I visited Hans Louwerse from Rock Steady Boxing in Ede. We had a nice chat and I got to see in real what everything looked like.

Today there was another training for people who want to given Parkinson's Boxing training. Met nice, enthusiastic people. Nice to get a few new trainers. Please click here for his website.

‘UwVerzuimregisseur’ is a Dutch company and operates only on the Dutch market.

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‘UwVerzuimregisseur’ has been there for the chronically progressive employee for 5 years now.

"You are not alone. They are here to accompany you on this journey. Feel free to reach out to them.”

Connect with Reinout Slee on a Friday afternoon to get updates on UwVerzuimregisseur's progress. Celebrating a fiveyear milestone involves reflecting on the past and looking ahead. Wishing Reinout and the entire UwVerzuimregisseur team a joyous year and congratulating them on their 5th anniversary.

UwVerzuimregisseur was established five years ago by Theo van Neerven on December 18, 2018, who is living with Parkinson's disease. Since its inception, UwVerzuimregisseur has been providing assistance to employees with chronic-progressive diseases to help them maintain their work and secure IVA benefits. This support is offered before, during, and after the evaluation by the UWV.

They offer peer support, financial guidance, and serve as confidential advisors during meetings with the company doctor, employer, and UWV. They empathize with and assist chronically progressive employees in tackling the challenges they encounter, contributing to this intricate process.

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How it started Reinout Slee hosted a podcast to delve into long-term absenteeism. He welcomed Theo van Neerven to discuss absenteeism, reintegration, and his journey with a chronic-progressive illness. Reflecting on that episode with Reinout and Theo reveals a truly special moment. Are you interested in checking it out?

"You are not alone. They are there to embark on The microphones were turned off, I viewed this as a distinctive this journey with you.

Don'tInitially, hesitate to contact and Reinout responded opportunity. as a freelance spontaneously, saying, "Setting up Absenteeism them.” Director and later as a this company is commendable. How do you plan to proceed with it?

Given your chronic illness, how can you ensure the company's continuity?" Theo glanced at Reinout and remarked, "This situation seems tailor-made for you." After contemplating it for some time, Reinout...

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director.

Fast forward three years, and we witness the outcome. Reinout has evolved into a thriving company with numerous beneficial changes. The company expanded from managing a few processes to handling around 90 processes simultaneously! "We have improved service accessibility, enhanced professionalism, and ramped up our marketing efforts."

"Our services have expanded, with a From the perspective of a labor expert, continued emphasis on WIA guidance. we focus on responsibly tailoring the Initially centered around work work environment. We assess the cessation, we now also concentrate on nature of the work, the collaborators, work retention. Collaborating with and the methods, exploring potential employers, we explore potential adjustments. This can have a avenues for ongoing employment. significant impact. If there's a viable This process hinges on the work option, we adjust the process while dynamics and the individual's medical considering the individual needs and condition. We ensure responsible work values of our client. It's crucial for our practices by partnering with the client to retain control over their company doctor, employer, and our journey. Peer support is vital in this client. The company doctor, as a process. We connect our clients with medical expert, can consult the peers who offer guidance based on treating physician for information. their own experiences. Naturally, the Our actions are guided by the employer must be open to alternatives; company doctor's recommendations." otherwise, progress may come to a halt.

1) Client: the chronically progressive employee

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What is on your clients' minds?

“If you find yourself needing to change What remains? This leads to your usual work methods, it's a clear increased financial stability, sign that a new approach is necessary. fostering inner peace. It allows You might be inclined to persist due to for clearer insight, enabling you financial reasons or unfulfilled to define your goals and aspirations. Financial uncertainty often identify obstacles to overcome. looms large. UwVerzuimregisseur can The three crucial pillars include provide a detailed financial assessment direction (transitioning from to alleviate your worries and familiar work routines), determine your current and future camaraderie (aspiring towards financial standing. This includes new goals instead of giving up budgeting for essential expenses such on old ones), and personal as phone/TV/internet bills, groceries, financial awareness. and visit monthly the cinema.”

Guarantee After accomplishing over 200 processes, they can now offer a guarantee to their clients. This guarantee includes free legal assistance and advice throughout an objection process. This assurance has been utilized three times, resulting in two successful outcomes validated by the UWV.

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An objection procedure is in progress following a statement from an insurance doctor suggesting that Parkinson's disease can be cured with DBS. They anticipate completing this objection process successfully within two months, ensuring that all their procedures lead to the rightful benefits.

What would you like to ask UwVerzuimregisseur? Schedule a free half-hour consultation with UwVerzuimregisseur For all work-related inquiries, feel free to reach out to UwVerzuimregisseur. They are dedicated to supporting you whenever you need assistance.

If you have any doubts about the nature of your question, simply give them a call to clarify. Alternatively, you can refer to the list of frequently asked questions or explore their podcasts on the topic.

UwVerzuimregisseur is your goto for any queries about work, income, and benefits. You can easily arrange a complimentary half-hour introductory meeting where you can discuss your concerns and receive guidance from UwVerzuimregisseur. If additional time is required, a suitable process can be initiated. These discussions can be conducted either online or at their office in Breda.

Reinout and Christel handle all initial meetings since they involve the most intricate tasks.

They commence by identifying the precise information required. Either Reinout or Christel can then bring clarity to the situation through targeted inquiries.

Within thirty minutes, they uncover the heart of the matter. Frequently, the initial query is not the actual concern; there is usually a deeper issue.

Their aim within this timeframe is to pinpoint the essence. Feel free to reach out to them for assistance with objection and appeal procedures as well as employer dismissal processes.

Click here to schedule an appointment immediately.

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LEGAL COUNSEL Having an in-house lawyer with around 20 years of experience is dedicated to enhancing the professionalism of legal support.

Reinout mentioned, "Legal expenses insurers are familiar with our services. UWV can rely on us, and we can process claims for legal expenses insurance. This ensures that you receive reimbursement from the legal expenses insurance."

However, guidance is provided by UwVerzuimregisseur. It is beneficial for the client to have a single point of contact, backed by a team of experts who collectively address their diverse needs. You are not alone anymore.

Website

The UwVerzuimregisseur website is set to undergo additional updates, detailing their current activities such as an entrepreneurship program and providing more information on legal support. With the expansion of services, new personnel will be required to support this growth. In the near future, 2 to 3 job openings will become available.

Reinout mentioned that getting certified will enhance our visibility and readiness for broader occupational health and safety services. Presently, we primarily get inquiries from employees, peers, and patients. However, our goal is to be easily discoverable by employers seeking optimal care for their employees with a chronic progressive disease.

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5 year anniversary

5-year anniversary

"To mark this special occasion, we will be sending birthday cards to all our contacts to share in the celebration. Our branding and logo have been updated to commemorate our 5-year anniversary. Visit our website to see a list of our diverse customers, ranging from small businesses to large corporations, and from warehouse employees to CEOs. A new brochure will be released by the end of February, and an ambassador kit (containing a brochure and cards) can be requested on our website."

Click here to order the “ambassador kit”.

Wendy's Parkinson Journey Reinout said, "You launched your own magazine with immense enthusiasm, setting a great example for others in terms of work ethic. Your exceptional skill in multitasking, typing, and listening simultaneously is both admirable and exceptional! You are a true inspiration, demonstrating the incredible outcomes that enthusiasm, passion, and talent can bring to an individual."

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Thank you, Reinout, for the lovely chat. Wishing you a joyful year ahead and great success in pursuing your goals.

a r o l F

"Make the most of it while you still have the chance."

Vague complaints in young women.

Flora knows all about it.

Flora expressed, "The name 'Flora' fits me perfectly. I adore color and flowers." The term 'Flora' originates from Latin and signifies flowers.

"Hello , this is Flora f rom Just like her name reflects her essence, Flora's first job was Ca pe Flo rida an ideal match: on the Florid When the phone rang, Flora responded: aweg ."

At Cape Florida, they offer assistance to individuals with disabilities.

After some time, Flora opted for a change and embarked on a working holiday in Ukraine. She joined a children's home where she encountered her future husband, who was engaged in painting work there.

Not long after, they married in the Seven years later, they came back to Netherlands and made the decision to the Netherlands when their son was go back to Ukraine, a country that ready for group 3. They chose not to had deeply touched their hearts. disrupt his schooling midway through.

Upon their return, they immersed themselves in the daily life of Even though this was some time ago, Ukraine. Initially, they resided in an they continue to stay connected with apartment without hot water and some of the children who lived in the faced electricity issues daily. They home back then. The street children's established a residence in Ukraine for initiative began in 2003 and marked street children and those lacking a its 20th anniversary last year. proper home. Flora mentioned, "I "Establishing this project for street provided training to local individuals children was my passion, my lifelong to lead groups and selected two dream." successors from the team to oversee the entire operation."

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Flora suffered from complaints A couple of years after returning to the Netherlands, Flora started to encounter different physical issues. The symptoms were vague, making it challenging to pinpoint their exact nature. At first, it was believed to be a delayed burnout from the previous busy period.

Eventually, it was determined to be psychosomatic in origin.

Psychosomatic symptoms stem from stress or tension without a distinct physical explanation.

Flora shared, "This was a challenging time for me. I felt embarrassed as I struggled with certain tasks without a clear explanation. I had to decline a school trip due to exhaustion, adding more stress to an already tough period. Eventually, I reached out to my doctor. Bringing my youngest daughter along, I expressed that this situation had to change." To Flora's surprise, the doctor responded, "Oh well, just look at how happy your daughter is to be by your side." Flora pondered, "Must something catastrophic occur before they believe me?"

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“At one point I noticed that I could no longer tap the table with all my fingers and the same applied to my toes. The loss of function on one side. Then I thought, wait a minute, that's not right. That can't be psychosomatic. So I decided to go back to the GP, who then requested a second opinion from the neurologist.'" After several examinations, a letter arrived on the doorstep. The invitation to discuss the results.

There were things in every corner of the house.

“At that time I was very busy putting together Christmas packages for Ukraine. The collection campaign had gotten a bit out of hand and our house was full of things that kind people had brought. I had enough to send three packages per family. The truck's departure date had already been planned and it would be a race against time to get everything ready on time.

With all the hustle and bustle, I thought that a bad news conversation at that moment would have so much impact that I would not be able to send the packages on time. That's why I decided to postpone the appointment with the neurologist, which was actually scheduled for Thursday, for another week. First, all the stuff had to be picked up on Friday, and then I could relax and prepare for the results.”

"I called my husband first and then my mother. The adrenaline subsided and I calmed down. On my drive home I thought, "Luckily I don't have a brain tumor." That was a relief. But I also had a feeling of confirmation: " You see, I didn't imagine everything. Something is "Flora, you have Parkinson's disease." really wrong." My mother had “How could this be? I'm only 37! After leaving the parking garage emotionally always told me, "No, Flora, that's not it. It's not psychological." And but calmly, I parked my car in a quiet she was right. place to calm down for a moment.”

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“A misdiagnosis has so much impact.” . that when something Flora decided to go back to the first “I've learned neurologist and told her: "I don't blame you for not thinking about Parkinson's at this age, but to have me go home with the comment that it is psychosomatic, that was terrible. I wish you had been honest with me and told me you couldn't find anything. This has had a huge impact on me." The neurologist started looking through her papers.

"I couldn't do anything else," she assured Flora. "You shouldn't have taken it so hard that it was psychosomatic." “It feels good that I had the courage to go back. It took me a lot of energy, but it just had to be said. Later I also went back to the doctor.”

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doesn't feel right, it's important to communicate clearly about my feelings and concerns. Despite my self-confidence when I have my makeup on and think I can handle anything. But at that moment it is essential to show my vulnerable side for a credible appearance.”

After starting her medication, Flora regained much of her life. She decided to take in foster children, something she always wanted to do since her time in Ukraine. She effortlessly combined this with the care of her biological children and at the same time was open to offering a warm home to children who needed it.

"I love children.

I welcome them with open arms."

“Life before my diagnosis and . was heart-warming.

"All this help without medication was very difficult for me. I couldn't function and needed a lot of help from those around me to keep everything running. I had to rest for 11 hours every day and had food delivered twice a week. Fortunately, there were also people who took the children to school, provided domestic help twice a week and came to babysit once every two weeks on Friday, so that I could rest during the day. I was even able to borrow a car for free from people who had two, so that I could get around more easily.”

After my diagnosis and thanks to medication, I was able to do everything I wanted again. My life was back!"

"I was able to make my dream come true by opening our hearts and homes to foster children. A doctor at the Erasmus hospital predicted that I would still have five good years, and I made the most of those years. I did everything I could. wanted to do, such as a day at Walibi or paragliding in Austria."

My advice is to look at what you most want to do and make that happen. I went on a motorcycle trip with my husband. Something we would actually do when the kids grew up. People themselves offered us help, which allowed us to make this journey. It's heartwarming to see how many friends were willing to make this possible for us.

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"The first 5 good years are now over."

In the meantime, Parkinson's continues to progress and medication is increased, with some already reaching the maximum dose.

“The five good years that the doctors had predicted are now clearly over.

Caring for a foster child in the short term is still manageable, but in the long term I lack the energy.

Previously, we had periods with three foster children at home, in addition to our three children.

Fortunately, I can always count on friends who are willing to help and support when things get tough, for example when I'm with

the children want to go somewhere and don't have the energy to drive back. Shopping for children's clothing has also become quite an undertaking. I always check the hive in the spring and fall to see what they need. Then I plan a day out to shop together and have a nice meal somewhere. It is important to spend quality time together and do fun activities together. Unfortunately, I can no longer spend all day in stores like I used to. Now I visit a few stores where we can find everything, even if it is a bit more expensive.”

"Happy to be in the hospital for the children now."

"I try to burden my children as little as possible with my illness. In the first years I could compensate for almost everything with medication, but that is no longer possible. My children are now 14, 17 and 19 years old and see everything that is going on around Parkinson's. The foster children were on average no older than 12 years old, usually about the same age as our children. It was often quite a ritual to get up in the morning with so many children, but I always thought it was worth it and was happy when I had arranged everything and they were at school on time. We have had 53 children in the house in recent years."

“Since nurses cannot always be with the children for long, I offer comfort, cuddles and sing them to sleep. I also provide human warmth and comfort to children in the incubator, who are too vulnerable to hold. With older children I take a tour of the hospital in a wheelchair, while I chat with others or play a game. I feel appreciated by the nursing and pedagogical team. I wear a uniform and a badge. The work is part-time and flexible, which hopefully can be maintained for a long time in combination with Parkinson's.”

Flora recently started working as a volunteer at the Ikazia Hospital, where she works with the pedagogical service to be there for children whose parents cannot stay with them all day in the hospital.

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“Taking photos is my passion.”

“Photography has always been my hobby, since I was 16. These days I have the opportunity to take photos of premature babies born at Ikazia Hospital so that the parents have something tangible when they go home. The emotion I see in the parents when they look at the photos is beautiful.”

“My Parkinson's makes it a bit more difficult to take photos now. Still, I am grateful for the tips I received from a professional photographer who had to give up his profession because of Parkinson's. He has taught me new ways to use my camera so that I can continue to take beautiful photos for as long as possible.”

Photography is my passion. I just have to take a photo when I see a bird in the garden. I believe in a God who made nature so beautiful. Photographing God's work and bringing it to people's attention. That's it for me!

Enjoy and view my photo album online here.

"Great to have a laugh together" “Now I'm not a sporty person myself. I have learned to integrate exercise into my daily life. Whenever I go somewhere, I always try to take the bike. This change was quite big for me, as I wasn't very active before. Now that I experience the benefits of exercise, it has become a great motivation for me.”

“We consciously chose to live in a pleasant neighborhood. Our house is spacious enough for our family and foster children. Fortunately, we have found an ideal location near a playground and petting zoo. I enjoy the hustle and bustle at home, but my Parkinson's makes this more difficult. I try to stay as active as possible.”

“I always say that being sick is a concern, but it is always possible to become a patient.”

“I also enjoy the coffee moments at parkinson's meeting point Yoppers Groene Hart in Reeuwijkse Hout. It is nice to come together and share everyday experiences. Sharing recognizable problems creates a bond between people. Plus, it's fun to joke and laugh together. The location itself is beautiful; Reeuwijkse Hout is easily accessible for me and offers beautiful surroundings. I'm looking forward to spring, when we can sit outside and enjoy nature again. A big advantage is that I can take my children with me, which makes me feel relaxed.”

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Podcast met Togetherforsharon & Wendy's Parkinson Journey.

Podcast "2 parkies in a pod" with guest Larry Gifford The podcast "2 Parkies in a Pod" is hosted by Dave Clark and Kuhan. This week the gentlemen have a conversation with Parkinson's activist and fellow podcaster Larry Gifford. His podcast 'When life gives you Parkinson's' offers a candid look at the condition without taboos. Larry is also the founder of PD Avengers, a global alliance of people affected by Parkinson's. During an extended discussion we share our experiences with the DDay (diagnosis), Larry's journey with DBS and the impact of Parkinson's on relationships.

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PD Avengers is a patient-led organization united in the purpose of ending Parkinson's disease. We increase awareness, involvement and hope. We add urgency to the cause of ending Parkinson's disease.

Think globally, act locally

SPECIAL PDavengers PROGRAM AROUND THE WORLD PARKINSON DAY - APRIL 11 STAND UP AGAINST PARKINSON: JOIN THE GLOBAL COALITION IN A MILLION X RISE FROM SITTING STAND ON APRIL 11 JOIN THE PARKINSON'S UNITY WALK IN NEW YORK OP 22 APRIL PARKINSON IN EUROPE: WORLD PARKINSON DAY TOOLKIT JOIN THE DOPAMINE DANCE AGAINST PARKINSON ONLINE JOIN THE INSIGHT CONFERENCE FOR MORE INFORMATION CLICK HERE TO GO TO THE WEBSITE

Click here to become a PD Avenger!

Join our efforts to fight Parkinson's by signing up to volunteer or host a Spark The Night Party on April 11. Join the PD Avengers and be part of an impactful movement that makes a real difference.

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PDAvengers The Eiffel Tower and the Sydney Opera House look beautiful because they both emit blue light.

We need your help!

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Help us illuminate countless locations worldwide in blue to raise awareness of Parkinson's disease on World Parkinson's Day 11 april 2024 10 MILLION LIGHTS FOR 10 MILLION PEOPLE WITH PARKINSON'S DISEASE Each light symbolizes an individual affected by Parkinson's disease, and together they illuminate the path to awareness, understanding and hope.

This initiative is a call to action, urging us to unite, work together and make a meaningful impact in the lives of those affected by Parkinson's.

The 10 million lights vision reflects the power found in numbers, and highlights the collective effort needed to create positive change and illuminate a future where Parkinson's has less of an impact on people's lives. On April 11, help us light up buildings, bridges and iconic monuments for World Parkinson's Night.

Can we count on your help to turn the world blue in one day to promote Parkinson's awareness?

Let's make a statement together and raise awareness.

Click here to contact PDavengers.

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‘Stichting ParkinsonFonds' wanted to do something with the poems of Annechien & Gerrit. This led to the Poetry for Parkinson's campaign, which immediately raised money for fundamental research.

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Several individuals crafted beautiful poems for 'Poetry for Parkinson's' in a heartwarming display of commitment. It's touching to see both those with Parkinson's and their loved ones surprising individuals with Parkinson's with these heartfelt words. The event shared touching stories of mutual support and the profound impact it has on those involved. This poetry competition has deeply resonated with both individuals with Parkinson's and their support network.

Special thanks to Annechien and Gerrit for contributing their poignant poems to ‘Stichting ParkinsonFonds’, which inspired this initiative. The competition winner, Frank Schijven, deeply moved the judges with his piece, "Parkinsonate47". While choosing the runner-up was challenging, Els Haring – Ruigrok's captivating acrostic poem beautifully captured her personal experience with the illness. Thomas Homan secured third place with his evocative portrayal of his friend's father's battle with Parkinson's. The judges were eager to witness how his work would resonate in a live reading. Peter van den Berg received an honorable mention for raising over €1,000 in just 48 hours through a unique poem on the theme of freezing.

A nice amount of € 3,526 has been raised, which can be used to conduct fundamental research. And the good news is that there will be another poetry competition this year, so you still have the chance to participate.

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An Evening Full of Prizes and New Friends It is very nice to be invited to an evening full of prizes, where your poem is assessed by the jury. Not only did the winners receive great prizes, but I also went home with great rewards for my efforts to write a poem and raise money.

But what I liked even more were the special conversations at the table. I met new people, which is always fun! And I always enjoy it when people tell me what a beautiful magazine I make. Gerrit asked me how can people actually find your magazine. That is a good question. The best thing you can do is point them to the website where they can find my magazine, so that as many people as possible get the chance to see it. Order a real magazine and take it with you to a hospital appointment or share it at a meeting. Let people know it exists. This is how we help each other, isn't it?

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On the evening, Annechien presented a lovely booklet fresh from the press as a personal gift. She also included a heartfelt message within the book on the same evening.

The book was inspired by a man Annechien regularly encountered at the shopping center, who greeted everyone warmly. Although they never conversed, his demeanor inspired her to pen this tale. The result is a beautiful book that urges readers to appreciate life's little joys and to notice and embrace the beauty around them.

Let yourself be swept away by the journey of life, influenced by this wise man. His wisdom and lifestyle will captivate both young and old. This poetic book, adorned with enchanting illustrations and tranquil moments, is a masterpiece that enlightens and touches the soul. It celebrates the splendor of life and the pure happiness of childhood often forgotten in our hectic lives.

, Thank you , Annechien autiful for this be book!

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"Inspire each other positively and learn from each other."

Under the starry sky, a night full of splendor, Where stories dance in the soft moonlight.

Reading each other's stories brings recognition, seeing each other promotes connection.

Embracing with positive power, Inspiration blooms, like a spring flower that smiles.

A hymn to perseverance and positivity, an ode to resilience and creativity.

Embracing Parkinson's with a positive atmosphere, a page full of inspiration, Wendy's Parkinson Journey, a magical magazine, provides motivation.

On every page lies a treasure of life force, a journey, an adventure, an unexpected inspiration.

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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: '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 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 Enjoy Life magazine.

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Parkinson J s ' y our nd e ne W y

www.wendySparkinson.co m

World Parkinson's Day - 11 april Click here to go to the website where you can find the magazines and information about Woman & Parkinson event 2024.

Click here for the webshop