English Parkinson Magazine Enjoying Life With Parkinsons - September 7, 2023

Hi, I am Wendy and making this online magazine. I hope you like it. And if you do please share with people you know who willl be interested. By the compliments I receive from everywhere I notice that people love to read my magazine. How great would it be that more people would be aware of it and maybe can give them some joy by reading my magazine.

n 2017 just before my working on all kind of ided I want to make a ld ever have my own ion and I like to share ers dealing with their er. And I love to design ned so people like to it as a memory. little village called ost people kmow Gouda But it is also a very tiful buildings. I love Gouda.

I am married and have 2 dayghters of 15 and 17 years. I am 54 years old now. I was 47 when I was diagnosed.

Enjoying lifewithParkinson's - 3 -

Enjoying

Gouda

Living with Parkinson's daily

Do you want to know more?

Come listen on September 16

2023 at 9 am Pacific Time I will give a presentation in above mentioned facebook group about me and my online magazine. This will be an English presentation. I will put the invitation on this page as a link as soon as the invitation is on line.

Nikolas Koukoulakis, the artist, and his passion for art and photography

Nikolas was born in 1969 (54 years old) in the picturesque town of Kaisariani, a small suburb of Athens, Greece. Nikolas Koukoulakis has always been in motion, driven by an insatiable passion for sports. From an early age, he embraced various disciplines like gymnastics, soccer, cycling, and even table tennis, but his desire for a greater challenge pushed him forward.

It was weightlifting that ultimately captivated him, a sport that, however, would exact a toll on his body. At the young age of 14, he was already lifting astonishing weights, boasting records such as lifting 240 kg. His coach constantly urged him to lift more and more, without considering the consequence.

Nikolas began to suffer from curvature of the spine (scoliosis) and shifts in his backbone. Suddenly, not only his sports career was interrupted but also his dream for the future was shattered. Aspirations of becoming a fitness instructor were cruelly disrupted by the physical challenges he faced.

Despite setbacks, Nikolas didn't let himself be defeated. He had to forge a new path and find a different direction for his life. Eventually, he chose to study chemistry and embarked on a journey into the world of science. His determination and resilience led him to a new chapter as a chemist.

Through the Lens of life

The journey commenced on a cruise ship, where Nikolas took his first steps as a photographer. A spark ignited, and his love for photography began to blossom. Hewanted to capture not just images but to reveal the world as he saw it.

On his way to Africa, the cradle of stories and cultures, Nikolas encountered an enchanting woman from the Philippines. Their love resulted in marriage and the birth of a daughter. However, Nikolas' restless nature and insatiable wanderlust strained the marriage, which eventually didn't endure.

The journey continued, through the vast landscapes of Africa. But the price of his adventures was paid in illness. Malaria and intense abdominal pain posed the initial obstacles on his path. On Crete, the disease reached its climax, leading to a major surgery where part of his colon was removed. The diagnosis: Non-Hodgkin Burkitt lymphoma, an aggressive form of lymph node cancer. Chemotherapy and radiation followed, a harsh battle that he emerged from as the sole survivor on his ward.

Amidst these challenges, Nikolas' spirit remained unbroken. He cultivated joy, organized celebrations, and dreamt of exotic beaches and adventures. The topic of death was one he left to others.

Journey to Zimbabwe

Journey to Zimbabwe

Motorcycling, another passion of his, was abruptly disrupted by a sudden inability to ride. However, this didn't deter him from accepting a ticket to Japan offered by cruise ship. His physical strength had post-chemotherapy, but he gradually to recover.

Upon returning to Greece, he found work in photojournalism. Yet, he yearned for more than the ordinary. During vacations, he traversed the globe and ended up in Zimbabwe, wh he was arrested on allegations of espionage. Thanks to his network of friends, he was freed. During this exhilarating incident, he noticed himself trembling, although fear wasn't part of his emotions at that moment.

Drawn by Nikolas

First signs

After his return to Greece, life took a peculiar turn for Nikolas Koukoulakis. At his workplace, he began to notice things weren't flowing as smoothly as before. Simple tasks grew more challenging, and even writing articles, something he used to do effortlessly, seemed impossible.

With courage, Nikolas made the decision to resign and sought a new path as a security officer, where writing held less significance. Yet, discomforts continued to accumulate It became evident that something was amiss, and Nik professional help. Medical test no physical abnormalities. The might be mental in nature led

It dawned on him that the sym grappled with aligned with th of Parkinson's disease. Althou the official diagnosis was pend he took matters into his own hands.

Simultaneously, he also lost h job as a security officer, due to reasons beyond his control. However, despite the obstacle Nikolas remained resilient. His determination to unearth answers and cope with the situation drew him closer to a explanation for the changes th had so drastically impacted hi life.

Enjoying lifewithP

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Always keep smiling.

The Parkinson's diagnosis appeared to Nikolas Koukoulakis as nothing more than a new chapter in his adventurous life. Guided by his experiences in Africa, where people continue to smile despite difficulties, he embraced the diagnosis with the same determination. He didn't let the laughter fade from his eyes, for if he could conquer lymph node cancer, he could conquer Parkinson's as well.

In 2011, Nikolas made the choice to enroll in university, despite his escalating symptoms. With perseverance, he embarked on a Physical Education and Sports degree, even maneuvering through bureaucracy to secure his papers.

The strength of Nikolas' spirit man the Special Olympics' Powerlifting in Athens, he also participated to m and international events in the Ma challenges, all while pursuing his u His vision stretched further, and af he aimed to delve into medical scie focus on therapeutic exercises. However, Nikolas' journey was not His sister, also battling Parkinson's him not only an ally but also a we inspiration. Together, they trained and held onto the power of movem

But Nikolas' dedication reached ev He established a table tennis team the attention of the National Fede heading to the World Table Tennis in Crete in November.

lifewithParki

Nikolas experience how to deal with Parkinson’s physically

Using a combination of scientific knowledge and his own experience with advanced Parkinson's disease, Nikolas has determined that people with Parkinson's require up to 5 times more energy and 3 times more strength than those without the condition. This is due to increased muscle tension that demands better physical condition and greater strength than usual. While these challenges may appear exaggerated, they are Nikolas's daily reality. Even walking requires significantly more energy and strength for him.

However, he hasn't been discouraged. With determination and a commitment to self-improvement, Nikolas has established a rigorous training regimen. Cardio exercises and resistance training fill his days, totaling 1.5 hours a day, five days a week. He even embraces intense training sessions, as showcased in this video where he lifts an impressive 200 kilogram.

"The Silver Linings of Weightlifter

Nikolas Koukoulakis

Aims to Capture Diverse Faces of People with Parkinson's in Black and White Photos"

Enjoying lifewithParkinson's

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Parkinson's Faces Project

Sometimes, a single photograph can unleash a world of emotions. For Nikolas Koukoulakis, it was a photo of a woman he made that rekindled his creative spark after a period of photographic silence. This one photo birthed an idea that would evolve into Parkinson's Faces Project, a profound black and white book capturing the diverse faces of Parkinson's.

From Nikolas' passion for photography emerged a desire to approach Parkinson's from a different perspective. The idea of capturing individuals with Parkinson's, each with their own story and unique expressions, blossomed. The project encompasses capturing the human experience behind the disease, the emotions and resilience reflected in their faces.

He invited people to participate in Parkinson's Faces Project, and the people who wants to be photographed during the World Table Tennis Championship in Crete. Through social media and his network, he spread the message and received interest from friends and connections.

Nikolas has set a goal for himself to continue photographing until the end of the year. In November, he will capture the portraits of those who sign up in Crete, expecting to photograph about 20 to 30 people from Greece.

Next year, a large-scale photo exhibition is planned in a reputable gallery, along with the creation of a photo album. Although the details are not fully worked out, it's clear that Nikolas, with the same determination and passion that guides his life, aims to offer the world a fresh perspective on faces of Parkinson's.

Parkinson's Faces Project stands as an inspiring example of how art, determination, and the desire to bring about positive change can converge to create a profound and meaningful project that captures the human experience in all its nuances.

"Parkinson Faces Project: Capturing Various Faces of Parkinson's" The impact of Parkinson's disease reshaped the trajectory of my career as a photographer. The pressures and inevitable delays in photo assignments became incongruous with the demands of my profession. Now, unburdened by the stress of deadlines and reporting, I feel it's time to capture Parkinson's through my lens. But how do I do that? I have a plan.

I will photograph the people around me, my friends and colleagues, and convert their portraits into black-and-white images. I want to show the world the multifaceted faces of Parkinson's, as each person experiences this condition in their own unique way. Through these portraits, I aim to raise awareness, increase understanding, and showcase the complexity of Parkinson's in all its facets.

If you happen to be reading this and are also planning to be in Crete in November, I warmly invite you to participate in this project. Stand before my lens, have your portrait captured, and share your perspective with the world. Show how Parkinson's takes on a unique form in each individual's life.

Photography is my passion, and with Parkinson Faces Project, I aim not only to continue my love for this art form but also to give a voice to those who live with Parkinson's every day. Let's collectively tackle this challenge and create a collection of portraits that not only depict the physical aspects of Parkinson's but also the strength, resilience, and humanity of those who face it. If you're interested in participating, feel free to send me a message via Facebook. Together, we can create a powerful depiction of how individuals experience their unique journey with Parkinson's.

Now, he looks forward with hope and anticipation to the World Table Tennis Championship in Crete. However, there is still an obstacle to overcome - his sister, who also lives with Parkinson's, sustained a meniscus injury during the preparations for the table tennis championship. Nikolas hopes that she can still join.

Nikolas lives alone, but he's supported by his mother, who assists him where she can and is still able to drive a car. Meanwhile, his daugh has become a stewardess for the Swedish Airlines and lives in Swe with her daughter and Nikolas' ex-wife lives also in Sweden.

Songwriter 'Lost Man' SilverLining

MarkEdward Fuller

Mark Edward Fuller and his passion for writing poems as earlier seen, for example on the subject of Parkinson's disease for the jazz album 'The Gift of Life' by the Rene van Helsdingen Trio.

Recently, Mark's lyrical talents have been put to use once again in the heartfelt lyrics of the song titled "Lost Man".

This composition has been artistically recorded by SugaRiff, with the mesmerizing vocals of lead singer Lain Barbier adding an extra layer of depth and soul to the track.

Picture: Lain Barbier and Mark Edward Fuller

The evocative melody of this song serves as a reflection on the haunting reality of dementia. Its lyrics paint a poignant picture of a lost soul, a wandering man in the midst of a relentless search for his true self.

Lost Man

Mark has been living with Parkinson's for over 15 years. You can find an interview with him in the 1st magazine of Enjoying life with Parkinson's.

Lyrics “Lost Man”

By Mark Edward Fuller

I am a lost man

Locked in the darkness of my mind

Standing naked

Stripped of memoryand time I touch my face

Is that tear really mine?

I see that face in the mirror

Worried and wild

And say: “is that mine?”

I am a lost man

With no identity

Still I see that face in the mirror

And I know it’s not me

Well I don’t wanna be a lover

Who’s memories of love all dried up

I see before me,a horrific scene

This man once proud and good Sinking to his knees

Enjoying life withParkinson's

In the dustbin of my soul

I search for scraps of me

But all I find are threats and anger

Of a mental disease

Now tell me about tomorrow

As if it really exists

Or is that just a nightmare of my mind

No matter what you’ll tell me

The future is no longer

A place of hope for people of my kind

We have no time

Why don’t they ever listen

No one seems to hear me scream

People in white coats with needles

They start a fight with me

Now tell me about tomorrow

As if it really exists

Or is that just a nightmare of my mind

No matter what you’ll tell me

The future is no longer

A place of hope for people of my kind

We have no time - 22 -

Enjoying life

Annemarie Mulders, gynaecologist at Erasmus Medical

Center, and Annelien Oosterbaan supported each other while training for the Rotterdam Marathon 2023.

Rotterdam Marathon Rotterdam Marathon

Annemarie and Annelien, good friends and former colleagues

Annemarie, gynecologist at Erasmus MC, met Annelien when she was undergoing her gynaecology training at Erasmus MC.

Annelien started experiencing symptoms in her last year of training, which later resulted in a Parkinson's disease diagnosis. Annelien was very open about it from the beginning.

Annemarie: "I have so much admiration for her, for how she was so open about her Parkinson's diagnosis from the start and how strong she remained. At the same time, she was also very vulnerable. She didn't hide away, but had this attitude of 'come at me.' If someone made a comment, she would say, 'This is who I am and I suffer from this because of Parkinson's disease.' She was very clear about her condition right away, and it made me think about what it means for work. I had just started my training as a Medical Specialist myself, and because of that, I appreciated even more how open she was about it."

Annelien firmly stated, "This is who I am, and we have to deal with it. I am incredibly driven and motivated to stay as well and healthy as possible."

Annemarie: “What a beautiful magazine you make and you will probably reach a lot of people with it. Not only your fellow sufferers, but also others through the power of social media. How good that you use the digital environment to get your message across. The moment Annelien told me that she had Parkinson's, it was really an eye-opener for me. At first I only thought of shivering old men, but the reality is that more and more young people are getting this terrible diagnosis. And that is why I think it is so great that both you and Annelien are creating so much awareness that more and more young people are getting this diagnosis.” - 24 -

Enjoying life

withParkinson's

"Annelien is an incredibly energetic person and draws a lot of strength from sports. In her enthusiasm, she also involves her entire surroundings. It's like she says, 'I may have Parkinson's, but we're just going to do this.' Her enthusiasm is so contagious that everyone becomes super motivated to help and support her in gaining more clarity about how the disease develops and what can be done to stay well. 'I have this, and I'm going to see what I can contribute to help others with this disease.' This gives her so much energy, and her children absorb that energy as well. It's fantastic how she handles it and doesn't let herself be defeated by the limitations that exist. She refuses to be knocked down and always looks at what she can still do and what activities she can enjoy with her children. Sports is something very natural for Annelien, and she loves doing it with her children outdoors. You can see her enjoying sports so much. Without any hesitation, her children even ran the marathon for the hockey club Victoria in Rotterdam. The hockey club gave a lot of attention to their participation and the sponsorship for ParkinsonNL."The hockey club has given much attention to their participation and the sponsorship of ParkinsonNL.”

Rotterdam Marath

Govert and her children are her great support

Rotterdam Marathon

Annemarie: "As soon as Annelien received the diagnosis, she said, 'I'm going to run a marathon.' She wants to stay strong, physically fit, and as healthy as possible. After completing her training as a gynaecologist, I bumped into her in the hallway, and she told me she was training for the marathon. I thought that was so cool. I wanted to support and encourage her, and we started training together. Annelien faced some challenges along the way, but she didn't let anything hold her back, and in 2019, I ran the second half of the marathon with her. It was our first marathon together. I found it so brave of her to just go for it. 'I'm doing this, I have Parkinson's, but I'm doing it anyway!'

She made such a statement. She showed that you can still achieve things, even when you're ill."

People admired Annelien's determination to run the marathon. They would say, "It's going to go well for sure." If you can rely on someone, it's Annelien. She always stays true to her word."

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The training

In 2022, Annelien had just given birth to Josephine and was not planning to run the marathon at all. However, she decided last minute to support Annemarie by joining her for the last stretch of the race. She wanted to give back what Annemarie had done for her in 2019. So, untrained, Annelien waited for Annemarie at the 30 km mark and from that point on, she stayed by Annemarie's side until the end.

For the 2023 marathon, both Annelien and Annemarie trained separately. They trained an average of 3 times per week and followed each other on Strava. Shortly before the marathon, Annemarie not only decided to take it seriously, but also to boost Annelien's action for ParkinsonNL by raising money for the cause. Together, they raised a total of €2,975 for research.

Annelien was genuinely moved by Annemarie's support and found her action to be very special. This brought them even closer together and gave them extra energy on the day of the marathon itself.

Rotterdam Marathon

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The atmosphere was truly amazing and Annelien was so enthusiastic. I couldn't keep up with her pace, so we didn't run together, but we both finished the race. Annelien, together with Govert, actually finished more than half an hour earlier than me! Govert is a real pillar of support for Annelien and they are so happy together, with their daughter and her other children. You can just see them radiating happiness, it's beautiful."

Annelien crossed the finish line in utter happiness. She recovered quickly and felt so much better both mentally and physically in the first few days.

Rotterdam Marathon Rotterdam Marathon

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"Yo tha reall y

You can just see them radiating happiness - 28

Sharon's son George, "My mother was the most caring, loving, positive person I know, and she always put her family and friends first."

The inspiring journey of Sharon's son George: Advocating for Parkinson's Cure

t George, a man on a mission. His passion for Parkinson's disease advocacy, driven by his mother's memory and his remarkable journey and relentless focus on finding a cure for Parkinson's. George's advocacy spans social media, public speaking, and community events, educating the world about Parkinson's challenges. All the interviews with people all over the world, including me, on togetherforsharon.com.

A great inspiration for us all, let's join him in his fight for more awareness and focus on finding a cure.

Parkinson's disease affects a wide range of people, and the collective efforts of these individuals and groups are essential in working toward a future without Parkinson's.

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Enjoying life withParkinson's

Sharon Riff Ackerman

Sharon was born September 28, 1950 in Brooklyn, New York and had two children George & Andrew. She was a teacher for several years. She primarily dedicated her time to raising her sons.

Sharon loved her grandchildren and often brought them bubbles, coloring books and educational toys every week. She was a mentor to her daughter-in-law. She was most proud of her children’s accomplishments. Unfortunately, George's mother, Sharon, was also affected by Parkinson's disease and is no longer with us. Now, George is dedicating himself in every possible way to raise awareness about Parkinson's disease and to do everything he can to contribute in finding a cure for this disease, all in memory of his mother, Sharon Riff Ackerman.

- 33 -

Enjoying life withParkinson's

George: "My biggest motivation is togetherforsharon.com. Unfortunately, my mother, Sharon Riff Ackerman, passed away on January 1, 2020, due to Parkinson's disease and dementia. My mother lived with Parkinson's for several decades, but it began affecting her daily activities in 2014. Until then, she could spend her favorite day of the week, Sunday, with us in the backyard, blowing bubbles with her grandchildren, enjoying the best meals we could find, but only after a lively debate about where and what she wanted to eat. I miss those funny discussions. I also create videos to raise awareness and share them for awareness. I have also participated in podcasts, interviews, articles, television, radio, blogs, and magazines to ensure that my mother's story is never forgotten."

- 2- 34 -

"My family established togetherforsharon.com for Parkinson's awareness and hope for a cure. I wanted a place where people could find information because I couldn't when I desperately needed help."

To get even more attention, George came up with the idea of Selfie Bands. These are wristbands that he had made in January 2020 as a tribute to his mother and as a way to increase awareness of Parkinson's disease, while continuing to hope for a cure, in memory of his mother, Sharon Riff Ackerman.

They ordered and financed over 1,500 wristbands and sent them to people in the United States to raise awareness for this disease and keep the memory of his mother alive, support awareness, and inspire hope for a cure. People who want to support George by ordering the wristbands are asked to submit a selfie, which will be posted on togetherforsharon.com. George shares these selfies with over 5,000 people on social media.

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In just a few months, George has met many incredible people who are also experiencing the effects of this terrible disease and are caregivers. He has formed partnerships with organizations around the world and showcases them on social media and togetherforsharon.com to reach more people worldwide. His main goal is to continually raise awareness in memory of his mother. He is confident that raising awareness will one day lead to a cure. He needs everyone's help to share his mother's story with one person, wear the wristband, or simply follow togetherfo so contact him m.

George and his family participate in fundraising activities and events for organizations such as the American Parkinson's Disease Association (Optimism Walk), Parkinson's Foundation (Moving Day), and Team Fox, the Michael J. Fox Foundation. All donations made to these organizations have a direct connection to the memory of my mother on togetherforsharon.com. -

Enjoying life withParkinson's

George is grateful for the opportunity to share his mother's story. He is just the son of an incredible woman who deserved better than what she went through, and if there had been a cure, she would still be with us today. She was too young to pass away and missed out on 15 years of her life struggling with Parkinson's disease. He misses her every second of every day. She was his best friend. - 37 -

Enjoying life withParkinson's

Cycling against Parkinson’s diseaseValkenburg - The Netherlands

On the picture: Bas Bloem (Professor), Bart Post (neurologist) and Annelien Oosterbaan (Researcher Woman & Parkinson)

Annelien: “Wonderful things can be made possible for people with Parkinson's, people who are full of life.”

Last Saturday, September 2, I participated in the "Bike for Parkinson's" event in Valkenburg.

Oosterbaan - 43- Enjoying life withParkinson's

I was proud of all the people with Parkinson's who passionately joined the event despite this diagnosis. On racing bikes, recumbent bikes, running bikes or electric bikes, everything was possible and participated. It was also great to see how all these participants were supported by caregivers and family and friends who joined them in the battle and literally conquered the bike course together.

It was my first bikeforparkinson's experience and also the first time in my life I cycled in an event with so many altimeters. The hills of Limburg were painful for the muscles but wonderfully beautiful and the atmosphere was great. It moved me to see so many attendees fully committed to the same goal: raising money for Parkinson's.

Over €200.000 was raised by all the participants (over 500). Such an unbelievable amount, I am enormously grateful but above all very happy about that!

Because that means that wonderful things can be made possible for people with Parkinson's, people who are full of life.

Once upon a beautiful day. A story about 5 friends and their silver lining on ‘BikevoorParkinson’

On Friday our cycling friends from Italy arrived and we had a wonderful dinner together in Valkenburg.

Enjoying life withParkinson's

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47 -

We cycled a beautiful route, the castle route, which was partly new to me. The weather was beautiful!

- 49- Enjoying life withParkinson's

Despite the pain, we kept cycling... - 50- Enjoying life withParkinson's

We quickly reached the finish.

Piece of cake for me.

The next day, just a round in Gulpen...

Having fun together, despite Parkinson's.

- 52- Enjoying life withParkinson's

Gerlach Roomans took part at the Novi Team with 24 other participants.

“In the Netherlands we are born on a bicycle! I have cycled all my life. And ithas been proven that cycling is a good way to exercise when you have Parkinson’s. I cycle every week a distance of around 20-25 kilometers. When the weather is good and when my family also joins we make tours of around 40-50 kilometers.

As of this year the set-up has been changed, instead of different distances where one can choose from, the organization lets the participants choose whether they would like a tough ride with a lot of climbing or a flat ride, a castle ride or a 4th one (or combinations of them).

Movie BikevoorParkinson 2016/2017 with Gerlach Roomans

Irma Scheurink and team

Pijnacker -Nootdorp

On Saturday, September 2nd, it was the 10th time for Irma, Gijs, and several others to participate in the cycling event "BikevoorParkinson." This event began in 2014 with a call from Bas Bloem to start training for the Bike because cycling can help against Parkinson's disease. Cycling through the hills of South Limburg, coupled with a fundraising campaign for a specific project. - 57 -

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Why 10 years? In the year of COVID-19, the event couldn't take place, but many people still responded to the call to go cycling on their own.

In 2014, 30 people with Parkinson's disease participated, along with a number of buddies. Over the years, the Bike has grown into a friendly family event in which even the youngest ones participate in their own way. -

This year, there were a total of 52 teams, including some big ones that have been participating for years, such as Team Gijs and VFC Vlaardingen, but also "Zusjes voor PA-rkinson", Liemerije, and Team Koekie. Irma Scheurink even came with two teams: Team Irma was joined this year by Team PijnackerNootdorp, which included the mayor, alderman, and three councilors. -

Enjoying life withParkinson's

The proceeds this year were overwhelming; at the close of this edition, it reached €204,146. Parkinson's increasingly affects people who are fully engaged in life. Annelien accepted the check on behalf of them this year. The proceeds will be used this year to create an online information and meeting platform on the Parkinson Association's website. On the platform, anyone can find understandable, relevant information on topics such as children, sports, sexuality, and more. - 62 -

Just like last year the Mayor and the Alderman of Pijnacker-Nootdorp were participating in ‘BikevoorParkinson’. This year they had their own team PijnackerNootdorp which exists out of 5 participants. Thanks to the efforts of Irma Scheurink they are participating since last year. Together they totally raised: € 3.734,00, -

“Forthesecondyearinarow, weparticipatedinthisgreat event'BikeforParkinson'with ateamfromthemunicipalityof Pijnacker-Nootdorp.Since parkinson'sisoneofthefastest growingbraindiseasesinthe world,weareverypleasedwe havebeenabletocontributeto theprojectsoftheParkinson Association.”

Enjoying life withParkinson's

- 64-

Bjorn Duncan Lugthart (Mayor) and Marieke van Bijnen (Alderman):

Team Yes We Can - Jos and Marit Voeten

€ 450,00

Cycling together, working together, looking together at what is still possible or how it can still be done, how it can be even better.

#silverlinings Enjoying life

This year Jos and M the 6th time. On Fr be sure they could the flat route as attack at the end of June. So he had to take it easy. A beautiful quiet, flat route of about 30 km passing by beautiful places. The weather was also beautiful, luckily, because it had been raining all day the day before. Just before the finish line they took a rest and enjoying the beautiful day on the terrace at the Shimano experience center for a while. On the time little by little, more and more people would arrive they cycled the loop that went up the Cauberg to get over the finish line.

Jos and Marit: “A great amount had been raised this year. Beautiful! See you next year!”

withParkinson's

Ruud Overes

At 7 o'clock I am in the car on my way to Valkenburg for the 'BikevoorParkinson’ event. The weather is beautiful and when I drive my e-mountain bike into the Shimano terrain at 08.15 am, Irma and Paulus are already there and laughing. I have set myself the goal of driving as many routes as possible and that means that I must leave immediately. I start with the castle route, then the border route and finally the flat route. It's a feast of recognition when I drive the Shimano terrain every time. People helping Parkinson2beat and The Parkinson Games. A big group of friends it seems. After one last loop through the beautiful hilly landscape of Limburg, I can also go to the finish. The odometer is at 166 km and it is now 17:30. I enjoy my beer and hear that the yield is higher than last year. What a success and what a wonderful day. - 68- Enjoying life

Cathelijne, Jolande & Ted of team ' Beste Beentje Voor'.

Team 'beste beentje voor' with 14 cyclists, including 3 people with Parkinson's: Ted, Cathelijne, and Jolande. They know each other from parkinson boxing at Bodhi Gym in Utrecht. There are also 2 people who joined as a support group. - 70-

Together, they raised an impressive amount of €17,675. It's not bad for their first participation in BikevoorParkinson, partly thanks to Ted, who reached out to his business clients and leads the group with €5,105.

Cathelijne said, "We started fundraising very early and were amazed at how quickly it progressed. Now, the amount has even reached €2,550. I basically spammed my entire address book."

Enjoying life withParkinson's

It was the first time for these 3, but certainly not the last! Cathelijne used to cycle a lot, participating in group cycling trips to places like France, Italy and Spain. She even cycled from the Netherlands to Prague with her own group of friends. Now, as a mother, she has stopped those long trips but still regularly cycles 50 to 60 km. Cathelijne rode a bike with 21 gears, everyone had their own choice of bike. - 72-

"I used to be a good climber when cycling, but now that I have Parkinson's, I have much less energy and get exhausted more quickly."

Cathelijne took the castle route. "It was quite challenging with all the little hills, and climbing the hill was quite tough. I ended up walking beside my bike in no time. In the group, it was nice

want to contribute to the fight against Parkinson's and raise awareness. When you talk about a silver lining, this is definitely one. I thought it was a day with a golden edge. I also enjoyed the contact with my teammates, many of whom I didn't know, because everything went so smoothly."

To other people with Parkinson's:

"If you're hesitating, just give it a try. It's not about the kilometers, and you don't need to be highly trained. See it as a sporty challenge and a good way to combat Parkinson's symptoms. Participating will really give you a boost in various ways. Truly, anyone can participate, you see all kinds of bikes - tandem bikes, tricycles, it doesn't matter. Many people also came just to watch. People at the start are asking, 'Who are you here with?' We even had to pause for a wedding when we followed a road through a field. There was a whole group of elegantly dressed wedding guests with a full music band, and the bride and groom had just started a march. Exactly when we were cycling by. Very special."

"We also turned it into a weekend getaway as a group. I couldn't make it there and back in one day. I don't have the energy for that. We booked a hotel in Schin op Geul, and we all arrived on Friday evening and left on Sunday. It was a nice, peaceful place with a beautiful garden and a great view."

Wendy van Wijk-Lugthart 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 the magazine together, interviews the people, writes the stories and turns it into a nicely designed magazine. This magazine is so valuable to many people.

It creates connection and the people like to read other people's stories. Other people may deal with it differently or coming up with some good ideas how to deal with it.

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

What am I living for and what things can I still do that are so important to me and make my life even more worthwile.

COLOPHON

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ENJOYING LIFE WITH PARKINSON'S. is part of: Jowija Marketing & Events.

Disclaimer: 'Enjoying Life with Parkinson's' has been compiled with the utmost care. However, Jowija Marketing & Events is not liable for any direct or indirect damage that may arise from the use of the information provided herein. No rights can be derived or claims can be made in any way from the contents of this Enjoy Life WITH PARKINSON'S magazine.

Enjoying life

withParkinson's