UPDATE August 24 - online magazine Enjoy life with Parkinson's - the Netherlands

Wytze

Debunks the prejudices about Parkinson's

One of the reasons for writing my first book 'Het Oliemannetje' was to bust the myths and prejudices about lobbying. The image people have of lobbyists is often negative and not in line with reality. If someone asked me at a birthday party what I did for a living, it would be better to say that I just got out of prison than that I was a lobbyist in Brussels. Otherwise I would be bombarded with (misplaced) criticism and my evening would be ruined.

There are also many prejudices and misconceptions about Parkinson's disease (PD). Parkinson's Life* compiled a top 3:

1: 'PD is an old man's disease'. This is false. It is true that PD is more common with men, but women also get the disease. In addition, PD progresses faster for women. It is also true that PD affects the elderly more often, but young(er) people can also get PD. The youngest patient as far as I knowwas diagnosed at the age of 12. I, myself was 37, not (yet) an old man either.

In 2nd place: 'PD is a trembling disease'. Also not correct. A tremor is one of the many symptoms of PD. Scientists have identified more than 40 symptoms as a result of PD: from muscle stiffness to sleeping disorders and from depression to constipation. They differ from patient to patient and can change as the disease progresses. I have never suffered from a tremor myself, yet I suffer from plenty other symptoms.

3: 'PD is curable’. I wish it was true! Yes, better medication and treatments emerge that slow down the progress of the disease and ease the symptoms, but to date there is still no 'cure' that can stop PD. Parkinson's remains incurable and progressive. In fact, the number of patients suffering from PD worldwide is increasing exponentially. That is why more research into this most disabling disease is crucial.

Wytze Russchen: Debunking the prejudices about Parkinson's

These kinds of prejudices - usually based on a lack of knowledge - stand in the way of a good understanding of what patients endure and how to deal with it. Therefore, more awareness is essential. For care providers, people close to a patient as well as the general public.This can contribute to a faster diagnosis and start of treatment. It can encourage family, friends and colleagues to support people with PD in a more meaningful way. And it can make patients feel less lost and isolated..

Parkinson's Life has started an education campaign #PLMythBusters* to 'bust' the myths about PD. Based on facts, not on prejudices. Living with Parkinson's is hard enough, fake news is the last thing we need. Therefore, I wholeheartedly support this campaign, but I like to do so in my own way, for example by wearing funny t-shirts, images speak louder than words.

Wytze Russchen

* Parkinson's Life is an online platform for the international Parkinson's community:

* Parkinson's Life is an online platform for the international Parkinson's community: and campaigns against myths / prejudices

https://parkinsonslife.eu/busting-parkinsons-disease-myths-with-ournewinfographic/

Go

Wytze Russchen: Debunking the prejudices about Parkinson's

The creativity, the writing and the connection with each other is coming all together in this online magazine Enjoy life with Parkinson's.

This magazines gives more understanding, empowerment and inspiration.

Renevan Renevan Helsdingen Helsdingen

Jazz,friendship& Parkinson's

Mark Mark Edward Edward Fuller Fuller

From a young age, Rene was engaged with music, particularly improvisation. His mother was a classical pianist and sent Rene to piano lessons when he was just 5 years old. "I was always stubborn," he says. And after 10 years of classical lessons, my piano teacher said:

"You can stop, because you never play what's written." Rene: "After 60 years of jazz and adventure, I can certainly call myself a jazz pianist." He has always been intensely and continuously involved in composing, performing, and recording music on various mediums. Over the last 45 years, he has organized numerous tours, projects, and festivals all over the world, and has recorded and produced for various labels including Virgin, Timeless, WEA, Zebra Acoustic, Pacific Music, his own label: Helsdingen Music, Munich Records, and Demajors Jakarta.

Parkinson's

At the age of 60 (2017), Rene was in a studio working on recordings, and he noticed he was feeling nervous. "I was trembling and felt insecure. I never even thought about Parkinson's at that time." In 2018, he was diagnosed with Parkinson's. "It didn't affect me much. There was a tremor on the right side, but it didn't really hinder my piano playing. I did some research for myself, but I didn't delve into the future. The outlook was too variable and grim for me to dwell on." Over time, he also started experiencing occasional loss of concentration, confusion, or panic.

For45years,jazzpianistRenevanHelsdingen hasbeentravelingaroundtheworld.

Rene van Helsdingen in de studio te Riccione, Italië

Emotionisanimportantfactor.

I have created a film about emotion. Wendy says, "I highly recommend it. Take some time to watch this!"

Moving

https://youtu.be/TqRNsE7v72Y

"I do engage in some sports activities and also go to the gym, but I also have small fiber neuropathy. This comes with significant pain in my arms and legs, which actually makes me focus less on the effects of Parkinson's. The neuropathy also makes exercising painful and challenging. My approach to dealing with Parkinson's is mainly about managing emotions and ensuring that I stay focused during activities. No unnecessary distractions and especially no stress. My advice is mainly that you should focus on things that are important to you. There's no one-size-fits-all tip because every patient has their own experience with Parkinson's."

"After the diagnosis, not much has changed. I adapt automatically, also due to the fact that I am an improvisational musician."

Video gemaakt door Rene van Helsdingen over emotie

"However, I do notice the progression of the disease and the limitations it brings, leading to the adjustments and compromises I have to make. The joy you experience as an artist persists, and the human instinct to survive in general becomes evident."

Nomatterwhathappens,staypositive.

Rene has always predominantly created instrumental music, and this is actually the first time he's recording an album with vocals. The album is titled "The Gift of Life," signifying that no matter what happens in your life, you can always remain positively inclined. Good and bad go hand in hand.

The album consists of 4 tracks:

"The Nasty Side of Life"something bad happens to everyone.

"Pain" - pain makes you strong.

"Metamorphosis, a Day in Amsterdam" - In this clip, Amsterdam serves as an example of movement. No matter what happens, we keep going.

Cameraman Martijn van Beenen during the recording for "Pain" with dancer Anastasiya Lisevich (a refugee from Ukraine).

"MarkandIsharetheParkinson'sphenomenon andthepositivitythatcomeswithit."

"Orbs" (a light orb) is an optical phenomenon that occurs when taking photos, consisting of circular, white, or translucent spots. Often, these are small dust, water, or snow particles floating freely in the air, reflecting the light from the flash. An orb is also sometimes perceived as an angelic presence.

For each song, there is a music video. These music videos primarily feature animations of art created by artists who are dear to me. The lyrics have been written by Mark Edward Fuller.

Concertserieslasting4dayslastsummer.

Rene van Helsdingen Trio: From left to right: Giacomo Dominic, double bassist; Rene van Helsdingen; and Ivan Gambini, drummer.

"The concert at the 4-day event during the Valkhof Festival last summer was a success and also a sort of test to see if I can still play as well as before. It all worked out, with, of course, emotional control. I wasn't nervous and was confident in my abilities."

Lain Barbier during the recordings at Farmsound Studio in Heelsum.

"IfIcandoit,youcandoittoo!"

BeautifulmusicisatherapyforpeoplewithParkinson's.

Rene: "I believe that concerts featuring beautiful music are a beneficial therapy for patients and for the general audience. As an improvisational musician, I expose myself and express my emotions. Live music is powerful, and I think that if fellow Parkinson's patients, especially, have the opportunity to see me play, it instills hope for the future. There needs to be more research, and everything will turn out fine. If I can do it, you can do it too!"

Enjoying

Rene: "It means continuing with all your will and love. Enjoy the days that come your way and pursue your dream, even if it may be different from what you originally imagined."

Rene and technician Wil Hesen at Farmsound Studio in Heelsum.

WithMark'sbeautifulwritingskills,we've teameduptocreateaproject.

Parkinsonfriends.

Mark (as seen in the following story) and Rene both live in Amsterdam. Rene had noticed Mark walking by a few times. Mark was dealing with severe dyskinesia, involuntary movements. In 2018, I spoke to him and it turned out he was a regular person with a terrible disease. We started meeting more often, and it quickly became clear that we needed to collaborate on something together.

Mark and Rene at Lil'Heaven Studio in Arnhem.

Bestbuddies.

Markwritessuchamazinglyrics. Markwritessuchamazinglyrics.

These lyrics truly capture what you feel and what's These lyrics truly capture what you feel and what's going on. That's why we decided to embark on a project going on. That's why we decided to embark on a project to create an album together. to create an album together.

Mark has had Parkinson's for a much longer time and recently underwent a deep brain stimulation (DBS) surgery, which has significantly improved his functioning. In our friendship, he's always concerned about me and never complains about himself.

We meet a few times a week, partly to discuss the progress of the project, but of course, also because we both have Parkinson's.

Liveandstaypositive. Lovesomeoneand takecareofyourself.

A beautiful message from Rene.

Andmostimportantly, don'tstayalone.

Mark, 66, began experiencing difficulty fastening buttons on his shirt nd noticed a decline in his fine motor skills 16 years ago. While unning, he developed back pain and lost his self-assuredness. Mark ecalls, "I received the diagnosis of Parkinson's at 50. I was devastated." hree years ago, he underwent a deep brain stimulation (DBS) rocedure, remarking, "What a difference it made." Although Mark grew p in England, he has been living in the Netherlands for 40 years. He's een happily married to his partner Abi for the same length of time, and he's been his constant source of support.

Mark emphasizes, "She knows more about Parkinson's than I do. You on't have Parkinson's alone; your partner has it too." Abi has created er own circle of friends with two other women whose partners also ave Parkinson's, and she maintains regular contact with them. Mark's career has spanned various roles in journalism, media management, and editorial work, including positions at renowned media outlets such as The Times in the UK and FD and BNR Nieuwsradio a total of 25 years) in the Netherlands. In the 1980s, he and Abi even aunched their own magazine, The Paper, whi eatured interviews with gures like Johan Cruyff nd Elvis Costello. Mark eflects, "It was the most eautiful part of my life. always have a lot of idea

n my head. I'm a true ntrepreneur, and Abi is a reat journalist—better th me!" Until he turned 60, Mark organized numerous gnificant debates on nergy and climate chang espite Parkinson's, he emained actively engaged in his work. Setting goals consistently has een vital to extending his capabilities and resilience.

"Withpositivethoughts,youcanachieve muchmore."

Mark together with his wife Abi.

Laughingalotisveryimportant!

Rightafterthediagnosis.

Mark: "The first year, I was completely lost. I was devastated. I used to be very active in sports and took pride in my body. Initially, I struggled a lot with how to move forward. The whole family was in shock. It was quite scary because we didn't know what the future held. This led to some depression in the beginning. But the clown within me has risen again."

When you're negative, you receive little response, but when you radiate positivity, the world opens up for you. "Through my positivity, I've achieved a lot." "Of course, there are moments when I feel down, but you have to keep fighting against it. And that's when it's great to have such good friends around you like Rene."

OnedayinAmsterdam

One day, I ran into Rene at the Locals cafe in Amsterdam. My daughter said, "Dad, there's a man in the café and I think he also has Parkinson's."

So, Mark went back into the café and struck up a conversation with Rene. Since then, they've become good friends. Mark is a huge jazz enthusiast and enjoys all kinds of music. And dancing comes along with music as well.

Exercise

Mark engages in a lot of physical activity because it makes him feel good:

Walking football

once a week

Going to the gym

three times a week

Yoga once a week

Regular walking and cycling

"Writingpoemsgivesmesatisfaction."

Mymainhobbyiswriting."

Mark still loves writing and is currently focused on poetry. Rene is moved by the poems Mark writes, and as a result, some of his poems ave found a place in the jazz music of Rene van Helsdingen. From the atest album, 3 tracks have already been released: 'The Nasty Side of fe,' 'Pain,' and recently, 'Metamorphosis: A Day in Amsterdam,' eaturing a beautiful journey through Amsterdam in rhythm with the music."

DBS

https://youtu.be/RxIr3e8GbUY

Mark: "I was dealing with severe hyperactivity, and the more dopamine I took, the more hyperactive I became." He decided to undergo an evaluation to see if he qualified for Deep Brain Stimulation (DBS) and was found to be a suitable candidate. "It was during the Corona period, but I got my turn after a 3-month delay." It took about a year to finetune the DBS properly. Since that time, things have remained quite calm. "I truly feel much better. I recommend anyone who is experiencing hyperactivity to consider this option in consultation with your neurologist, of course."

Mark: "Both movement and writing definitely help. And let's not forget my wonderful support system at home, the friendship with Rene, and hrough Rene, I've gained many more friends. Thanks to this, I horoughly enjoy life."

AdvicefromMark

Try to create something beautiful around you. And set goals for ourself. I still have a lot of goals for myself. Without goals, you can't ully enjoy life. You hear people around you saying that your life is ver now. That's not true at all! In fact, you can still achieve a lot. And t does so much for you when things really work out. Stay positive, eep your eyes open for the beautiful things in life. Be realistic." Mark: "I'm an ntellectual clown. f you haven't laughed n a day, you haven't ived a day' is my motto."

He enjoys a normal ife, going on acations, and loves ooking (Italian, ndian, Asian, a bit of verything). He uses rganic ingredients as much as possible.

Enjoying the Spanish life

Wytze Russchen

"One of the best decisions I ever made was to move to Spain. Not only is the weather delightful here, but also the way people approach life. The Spanish lifestyle adds color to my life, just like the sun that shines here almost always."

"Complaining and whining are less common here. All in all, this gives me a good feeling, making it beneficial for me not just physically but also mentally. It's a gift to be able to live here, where life is also much more affordable!"

Humor makes things a bit lighter

Wytze Russchen (1970) grew up in Friesland and has worked as a lobbyist for about 25 years in both The Hague and Brussels. You can read all about it in his book "The Fixer." Click here for The Fixer.

Since the age of 7, Wytze was already in contact with the hospital, when he had to lose one of his kidneys. At birth, the doctors had overlooked that one kidney wasn't functioning. Wytze: "Was as a little boy pulled out of bed in the early morning, rushed to the hospital in Groningen! That left a big impression, yes." In 2008 (at 37 years old), he noticed on the street that there was something wrong with his way of walking. "Alcoholic" was shouted at him, they thought he was drunk. "And that at half past 8 in the morning. I do like a drink, but not in the early morning! I had just had 2 cups of coffee!" At work, people began to pull on his jacket. "They thought my suit was crooked, but it wasn't. I sat crooked."

Still, he decided to visit the neurologist. "Ah, I can see it now. It's stress, Mr. Russchen. Just take a few massages, and it will get better." But no, they kept pulling on his jacket and shouting "alcoholic." There must be more to it. During a second opinion from another neurologist: "What do you want to hear first? I have bad news and bad news." Wytze: "Well, then give me the bad news first." Both a TIA (mini-stroke) and Parkinson's turned out to be his fate. Besides the one kidney, at birth, they had also overlooked a hole in his heart chamber. That's why, at the age of 37, a stent was placed in his heart. You can read about this in his latest book: "The Journey of My Life in 51 Anecdotes."

Humor makes things lighter.

Wytze: "Being diagnosed with Parkinson's and experiencing a TIA made me put life into perspective. Making a joke about something like that is a way for me to deal with it. It's the same in the book where I describe the heart surgery. I definitely don't want to make it ridiculous, but it does lighten the situation. Humor, for me, is a shield to deflect the hardest hits in life."

15 years of Parkinson's

From his student years until 2014, he rapidly advanced in his career and worked very hard. Seven years ago, he stopped working after a very intense period. Wytze says, "Looking at it positively, you could say that the Parkinson's diagnosis saved my life; otherwise, things could have ended up worse for me. Nobody can sustain that work pressure and lifestyle. In the first 6 years after being diagnosed with Parkinson's, I was still able to work very well without any issues. I had a job with a lot of stress, frequent travels, and heavy lobbying cases."

A very successful career and even knighted by King Willem Alexander for the great work Wytze has done. Wytze is incredibly pleased with this wonderf recognition. "I was there during the good times. The EU was in its early stages and was viewed as a positive project, even in the Netherlands. Nowadays, at social gatherings, it's better to say you've just come out of prison than to say you work in Brussels."

"Furthermore, I have also had the opportunity to write several enjoyable books for which I have received much appreciation. Many people think I live like a god in France, oh no, in Spain, but that's just the surface."

During the sale of my company, they took advantage of my illness and deceived me. It's painful when you've worked so hard and ultimately end up with nothing. There were a few other issues that arose, and I was quite stressed, which was again very detrimental to my health.

"It's as if when one thing happens, all sorts of other things happen right away. The Law of Murphy, unfortunately, does exist!"

Invited to Bas Bloem's.

"The first years after my diagnosis, I was prescribed dopamine antagonists in Belgium, so no dopamine. This allowed me to function well for a while. Until it became really unbearable. At that time, a large piece about me was published in De Volkskrant newspaper. It covered a whopping 6 pages on a Saturday. After that, I had a farewell interview in Het Financieele Dagblad. When the newspaper came out, I was called by Mrs. van Beek, who was a board member at Radboud UMC at the time. The salvation of my life!"

"After reading my interview, she offered me a second opinion at Radboud Hospital. Prof. Dr. Bas Bloem dedicated 1.5 hours of his time to me, which is truly exceptional and not something that happens so readily these days. He explained to me in detail what Parkinson's is and let me be part of the decisionmaking process for the best treatment. I hadn't experienced this in Belgium before. There, I would walk for 2 rounds and then get half an extra pill, and that was it! No communication with the patient whatsoever! What a relief, my visit to Nijmegen. You have a say and are invited to Parkinson's days involving various departments. Bas Bloem also changed my medication from antagonists to dopamine, which made things much better for a while. I was even able to return to work for 1.5 years!"

The healthcare in Spain

"The healthcare in Spain is not worse at all. In fact, they rank higher in the WHO ranking than the Netherlands or Belgium. I often get asked that question: How do you manage healthcare? You surely keep that in the Netherlands, right? Here, you have private and public healthcare. That's the only difference. The public healthcare is very good. In private healthcare, you actually receive the same care, but it's faster because you pay for it. For my DBS (Deep Brain Stimulation), I'll actually get it done sooner here (public healthcare) than in Nijmegen, where the waiting time is 18 months. So, it's not that bad here. Dutch people often think everything is perfectly organized there and it's like Africa here. Well, both assumptions are incorrect."

Cyberattack

"And then this happens to me. I switch to another hospital because they do DBS under anesthesia there and then this comes up. Cyberattack!"

"Oh well, they've got the wrong target. First of all, it's a hospital, so they don't have money, and secondly, it's even a Catalan (province around Barcelona) hospital, and Catalans are worse than Dutch people – they never pay."

“Recently, I had bronchitis and my general practitioner referred me to the emergency room because there might be something wrong with my heart as well. So, I arrived at 'Urgencias' (Emergency) and they first looked at my medical records. I saw the doctor's face turn red. I said, "I also brought a printed list of my medications. But don't be alarmed, it's a long list." To which the doctor replied, with a smile, "We've seen worse, Mr. Russchen." I replied, "Uh, doctor, that's just the first page; I printed it double-sided." He turned so red now that I was more worried about his heart than mine, haha. You can either sit in a corner and cry or make something of your life. It's not always easy for me either, especially with everything else that comes along. Parkinson's is already enough, and when you also get other conditions on top of it, it becomes quite heavy. By talking and writing about it with humor, it makes it easier for people to respond."

Some might wonder why I share all of this on social media. For me, it's therapeutic, and it immediately creates a bridge to talk about it. And that's comforting.

The Spanish

The climate is much better for me than in the Netherlands, with rain and cold, everything in my body starts creaking. I don't have any issues with very high temperatures, as long as the humidity isn't too high. I've been to Madrid in the summer and didn't experience any problems. But when I'm by the sea with 34 degrees and extremely high humidity, you might as well carry me away.

The warmth also makes me feel better, not just physically but mentally as well. Mentally, it's due to the abundant sunshine. Adequate sunlight is actually very beneficial for us. All in all, living in Spain is better. A Spanish friend of mine also has Parkinson's, and on cloudy days, you won't see him because he's bothered by everything. But as soon as the sun comes out, he's cheerful again and you see him doing all sorts of things."

climate is better for me.

Try to stay positive

Still enjoyable to write blogs now, just like for this wonderful online magazine. The new group Silver Linings is also steadily growing on Facebook. This group is specifically for people with Parkinson's who want to approach it with a positive attitude. Wytze: "I am convinced that this really works! I remind myself each time, you'll get through this as well, keep going. Right now, I'm very focused on the cyberattack that's causing a glitch in my DBS! This can happen in any hospital, just like that. It's unbelievable that people would do this to you. I often feel the urge to act, when I see how poorly Parkinson's advocates for itself, especially abroad. But it's good that we have someone like Bas Bloem. He is the face, the motivator, and the fundraiser."

Getting a dog, that's been my salvation, especially during the pandemic. Especially because you have to go out a few times a day and you can't stay depressed for long because the dog senses that and starts licking you to cheer you up. Both physically and mentally, a dog is beneficial for you.

"It's wonderful to take a long beach walk with the dog and watch the sunset. Tourists come here for the beach, but I might find the inland even more beautiful. The delightful outdoor lifestyle and intercultural interactions provide me with a lot. After 5 years, I can speak Spanish reasonably well, but I won't venture into Catalan."

"I have never regretted the move from Barcelona to Sitges. During the Corona period, I was simply confined within the city. I could only go out because I have a dog. And even then, I was limited to within 100 meters of my house, and if you went farther, you'd be called back by the police. It felt like the Gestapo. Thankfully, I had a rooftop terrace at my apartment. I wouldn't have survived without my dog! Barcelona was completely deserted, you can't even imagine it. I'm so happy to live in Sitges now. The tranquility is wonderful; I can't tolerate the noise and the crowds anymore. I live a bit farther from the beach now, but it's so peacefully quiet, and within 3 minutes, I'm back on the beach. A lovely spacious terrace to enjoy."

"The dog sets the rhythm of my day. I start the day with a morning walk along the beach, which is lovely on a day like today with sunshine and 24 degrees. I walk with the dog for 1.5 hours three times a day. Between April and October, dogs aren't allowed on the beach, so we head into the mountains. It's also fun to do a bit of mountain hiking, as long as it's not too steep. Besides that, I embrace the Spanish way of life, taking ample time for lunch and then having a siesta. A nice hour of rest. Additionally, I keep myself quite occupied with visits to the osteopath, physiotherapy twice a week, and yoga three times a week. I'm looking forward to the beach yoga classes. The classes will start again from April 1st. One-on-one sessions with a focus on stretching, loosening and maintaining muscles. I believe yoga should be recognized as a sport that does a lot for people with Parkinson's."

Enjoy life as it is now. Realize what is important in life.

"It was never really my intention to publish the book 'The Journey of My Life in 51 Anecdotes,' but rather to distribute it as a gift for my 50th birthday, but then came the time of Corona!? Well, then on my 51st birthday, I decided to publish it after all. It's nice to donate the entire proceeds to ParkinsonNL and the Michael J. Fox Foundation."

H"The book is a blend of laughter and tears. For the first time, I've included a poem at the beginning of every 10 chapters. It's a book filled with short stories that are touching and funny in their own right. You can even read it from back to front, whatever you prefer. If you read it in the regular sequence, you start with me as a little 7-year-old boy with a goat in the villa neighborhood in Friesland, and the book concludes here in Sitges. A brief overview of my life." The book can be ordere here.

Wytze's favorite passage from the book:

Fifty-One

The closer to death

the

"The beauty of this poem lies in the optimism it carries. That's what I want to hold onto in my life."

Online magazine Geniet van het leven met parkinson

"Love, friendship, and enjoyment are important to me in life. This aligns with this unparalleled magazine, which should be at the top of the shelves in many bookstores. A beautiful magazine focused on positivity and a variety of articles. I'm already looking forward to the next issue. A magazine that provides connection."

"The journey of my life in 51 anecdotes"

more I terribly crave for life and life craves for meaning. Sitges 2021

Cyber attack

"For years, I kept saying: I DON'T WANT DBS! Until a year ago, when things got so bad that medication couldn't treat it anymore. Up until last year, things were relatively stable, and then suddenly, I started deteriorating rapidly. What I struggle with the most are my shoulders. Some days, I have pain all day long, and it's not just ordinary pain, but an intensely bothersome pain. This is likely due to excessive movement on the right side, and it probably continues even during my sleep. This leads to constant stress on my muscles."

“"It's as if I'm directing traffic. My arms swing in all directions. But the most painful moment was at the beach café, which I also wrote a blog about. They thought I was publicly masturbating. Very embarrassing, but important to mention. It's so frustrating when people already judge you before asking anything. I'm very relieved now that the DBS is available, and because I'm still relatively young, I have a good chance of getting this surgery. Don't dwell on it too much. It's a strange idea, that they're going to do something like this in your head. That's why I changed hospitals as well. I'm definitely not going to have it done without anesthesia! In the Netherlands, they can do it everywhere with anesthesia now, but here, you have to find a hospital that also offers it."

"Due to the cyberattack, I'll probably be pushed back for the DBS procedure, but I still hope for this summer."

.

"Preparation for DBS

"Well, going into the MRI, that was quite an experience. I tried some breathing techniques beforehand and closed my eyes to keep myself calm. I didn't want to see that 'coffin'. Then you lie on the machine, and they put a metal mask on your head. Well, that's when my light went out, and I kept pressing the button. So, they had to give me a sedative. Later, I asked, why didn't you give it to me right away?

Because people might start snoring or moving, which can affect the quality of the MRI. Did I snore?

In addition, there were cognitive tests, and they wanted to see the difference between you with and without medication. To be eligible for DBS, you must be under 70 years old and have exhausted all other medication options. You might qualify for DBS if you're experiencing dystonia, pain, and/or tremors."

The worst that could happen is that I come out of it as heterosexual, or maybe I'll even speak fluent Catalan when I come out of the surgery. It's like a cyberattack, but in my head.

After Your DBS

A friend of mine who is also getting DBS sees it as the moment his new life begins. He asked me, "What are you going to do, Wytze, after your DBS?" I have no idea yet, probably the same as what I'm doing now. Let's wait and see, then believe. I'm not daring to make plans for after my DBS. I'm very realistic about that. Not pessimistic. I'll be happy when it's behind me and I know where I stand. However, I do believe you should be open to every innovation and development. You can see that there's a lot of movement in that direction now. Life is too valuable for me not to try something that could improve its quality.

Being diagnosed with Parkinson's at the age of 29! It could also happen to you.

Danny & Claudia

After a while, he began to wonder: Could there be something else going on? Or perhaps it's just stress? Summer arrived, and he went on vacation with his wife Claudia. For two weeks, he didn't experience any issues with his trembling hand, until the last few days when he went diving and something exciting happened underwater. There it was again, the trembling hand. It wasn't that thrilling of an experience, yet it continued to shake for a while. What could possibly be going on now?

nce back home, he decided to pay a visit to his general practitioner. The doctor was very attentive and quickly noticed that due to the asymmetric symptoms, Parkinson's could potentially be the cause. The doctor promptly referred Danny to a neurologist. Subsequently, he underwent an MRI scan to determine if there might be something else at play. Later, he also had a DAT scan, where radiological fluid was injected. This allowed them to track dopamine transport, revealing significantly less activity in the left hemisphere compared to the right. This is a fairly reliable indicator that Parkinson's disease is indeed the culprit.

Danny: "I was relieved to know what it was and that it wasn't a tumor. Initially, it was disbelief. But, well, finally I know what's going on with me. But how can this be? This is supposed to be an old people's disease, right? I'm only 29 years old! So young, it can't be true, I've never heard of this happens someone before."

Back then, no, but now the harsh reality is that more and more young people are getting this terrible disease.

"I buried my head in the sand and carried on. The first 5 years after the diagnosis, I managed quite well. After that, it became a bit more challenging, but I still kept going for another 5 years. In 2017, I was officially declared unfit for work (nearly 10 years after my diagnosis). Working has been so beneficial for me, and I still try to do a variety of things, although it's naturally become much more limited now. I find it important to continue supporting my fellow patients, and I'm eager to share my story. Claudia and I want to be there for people who, like me, received the diagnosis at a young age. We took the initiative to establish Yoppers WestBrabant. At the launch of ParkinsonNL, I became an ambassador for the organization. It's wonderful to showcase what I stand for."

Danny Claudia

"It hit me a bit harder than Danny because my grandfather's best friend also had Parkinson's. His condition was severe, and he had significant speech difficulties. So when I heard this news, I recognized it and had to let out a cry. At the time Danny received the diagnosis, we were truly alone in this. Parkinson's was rarely talked about, especially not in relation to young people. There were no YOPD cafes, no Facebook groups, and there was hardly any information available about this disease. Nowadays, you hear a lot more about it, and more young people are being diagnos and we've picked up the pieces a

Just before your wedding, you receive the diagnosis...

Definitely keep communicating with each other.

Danny and Claudia have always been able to communicate well with each other and continue to express their feelings to one another. Recently, they have started seeing a social worker. Danny says, "It's very comforting for both of us. The social worker asks the questions that we find difficult to discuss on our own. As a result, it doesn't feel as heavy for us as it would if we were talking about it at home. Continuing to talk to each other really helps us a lot."

In 2014, Danny visited a rehabilitation doctor who truly became a key figure in his treatment process. Initially, Danny went there for physical therapy related to walking, but he also ended up speaking with a psychologist, dietitian, social worker, and speech therapist. From there, they were referred to the nearby MEE Foundation (social services), which was familiar with Parkinson's. They participated in group discussions, where it was important for Claudia to talk about raising their children, feeling isolated, and having to take steps back in her career while dealing with an environment that didn't fully understand her.

Setting up a support network.

They advised us to establish a safety net, so that help can be called upon when needed. They took this advice to heart. Both of them wrote down their stories and created a drawing to illustrate their vision of it.

First, they selected a few friends who they thought would fit into their support network. From there, they invited around 18 people. They shared their story with this group, alternating with short clips from a video presentation by Ad Nouws. In this presentation, Ad Nouws provided tips on how to cope with the disease, and Danny & Claudia then elaborated on how they planned to implement these strategies in their own lives.

"We honestly shared with the group that we were getting stuck. We admitted that we didn't know what to do anymore and that we really needed your help." They had a large sheet covered with post-it notes, each containing a single topic they were concerned about.

"Together, we started working on these topics, extracting tips and tricks to keep our heads above water. With these people, we now have a group chat, so if there's something, we can post it in the chat, and there's always someone who responds. "Danny used to go grocery shopping when the store was quiet. But now, fortunately, groceries can be delivered, which gives Danny much more peace of mind."

Take good care of yourself!

A piece of advice from Danny & Claudia:

"Take the initiative to arrange things in a way that makes it easier for you."

Danny and Claudia have 3 children aged between 8 and 13, which can sometimes create a bit of hustle and bustle. When Danny needs a moment of rest, he retreats to his bedroom. It feels good for Danny to have some time to himself, allowing him to rest effectively.

"I want to be there for my fellow sufferers."

In doing so, Danny assists his fellow sufferers by providing tips on how they could manage things for themselves. He himself faced quite a few issues with the tube attached to his Duodopa pump. Now he has found a tube that's much more comfortable for him, but he has to pay for it himself. The previous tube he had was rejected by his body due to the titanium coupling. As soon as a product becomes slightly different, you're left to cover the cost yourself. It's something you genuinely need due to your illness, yet it's not covered by healthcare. There's still much to be done in terms of care for people with Parkinson's. Sharing these personal stories is important to demonstrate that many others are facing similar challenges.

During the interview, Mobility Products also came by to discuss a different wheelchair. It's reassuring to have someone visit your home who is knowledgeable about a wide range of solutions and can provide you with thorough information. You can immediately try out the wheelchair and see if it suits your needs.

"I want to continue doing the things that are possible."

"I want to keep doing the things that are feasible, to make my own life as comfortable as possible. And if I can also help my fellow sufferers in the process, that's certainly a bonus. I'm working on finding solutions for myself."

Seeking solutions on your own.

Danny needs a wheelchair because walking is quite challenging for him. He's currently undergoing treatment at Radboud UMC to explore potential improvements. Danny needs to be mindful of his energy levels, pay attention to his balance, and be aware of the possibility of freezing.

Because of his dedication to help fellow sufferers and also keep in mind they have young children, he doesn't always find the time to engage in more physical activity. He used a walking bike for a while, which worked quite well. Walking bikes are allowed both in stores and at work. Now he has one in his room again, on loan from his occupational therapist. The great thing about a walking bike is that if you were to lose your balance, you can simply sit back down on the seat instead of falling.

"I want to do something unusual again, but even that isn't covered automatically. It's incredible that you have to manage all of this on your own."

"I first rented one myself and went out with it a few times. I walked about 10 km with it in a matter of a few days. It felt truly liberating. I was walking at a fairly decent pace again. Before I had an appointment with the physiotherapist, I went to the clinic a day before using the walking bike to see how it would go. I intentionally brought some music along to detach myself from the street scene. It actually went really well. When I got home, I went straight to the storage room. I got off the bike, walked through the hallway, and sat on the couch in the living room without using my wheelchair. Three-quarters of an hour later, when I wanted to stand up, there was sudden panic - where is my wheelchair? That's when I realized I needed something to hold onto to move around the house. Usually, the wheelchair is always there, because otherwise, I can't move around my house. This experience showed me that being active is really beneficial and enables you to do more. My fitness level is currently quite low, so I need to work on building it up again. There's definitely work to be done."

At Radboud UMC, where he's currently receiving treatment to regain his ability to walk, he uses a special treadmill to actively stimulate walking. Starting from the first week of June, he's been going there once a week.

Once he makes some progress, he'll be able to give the walking bike another try. It's possible that stress or triggers from certain situations can cause a collapse in your posture. Psychologically, that becomes a part of you, and you have to work on setting that aside and being very conscious about trying to walk again. You essentially have to flip a switch and believe that you can do it and then proceed with determination. But if you experience something that triggers stress again, you might just snap back into that "off" state. So, you need to try to stay calm. You have to find ways to relax or avoid stressful situations in the best way for you.

Becoming more active through the use of a walking bike.

hoh,TheHague Janneke den Ouden

Janneke den Ouden was born and raised in the heart of The Hague, only briefly living in North Holland due to her father's work. After completing her education at the atheneum, she joyfully returned to her beloved hometown, The Hague, where she continues to reside not far from her original neighborhood.

Janneke spent a significant and enjoyable part of her career at the Koninklijke Schouwburg in The Hague. Reflecting on her early days, she said, “I started my working career by doing several jobs, including a job as a stewardess on a cruise ship for an English booking company. I had a great time during two seasons working on this cruise ship!"

After some exciting adventures, Janneke began working for Senf theater partners. This role eventually led her to the Koninklijke Schouwburg, where she thrived as a coordinator of Sales and Information for 22 years.

She proudly reminisced, "For twenty years I have been chairman of the Works Council. At every election, they forwarded me again. Especially during the time of the transition towards the collective agreement of the 'Koninklijke Schouwburg,' I did a lot of writing during the merger."

Janneke's story is one of dedication and joy, encapsulating a life well-lived, even as she continues to embrace her journey with Parkinson's. Her experience serves as an inspiration to many.

“I had a fantastic time working at the Koninklijke Schouwburg. My colleagues and I shared countless laughs, especially when playing pranks on each other. I remember one incident when I broke my toe, making it difficult to walk. In those days, we didn't have mobile phones, so I couldn't use one as a light. One evening, as I was nearly the last person to leave, the receptionist turned off the lights, and I had to navigate the endless, twisting corridors without assistance. Then, over the loudspeaker, I heard, 'Jantje, people want to go home, can you please hurry up?' ��.

Sometimes the technicians would set up props that looked like real people were standing there! It added to the lore of the building, which dates to 1766. There were even rumors of ghosts residing within the walls. Over the years, I wandered through the entire building both early in the morning and late at night. I knew all the nooks and crannies since I wrote and gave guided tours, but I never encountered a ghost! There's a whole network of underground corridors, just like in many large cities, though sadly, those corridors can't be visited anymore."

Janneke started experiencing various symptoms that eventually led to a Parkinson's disease diagnosis.

“I hid the disease for quite some time. Sometimes during a meeting, the table would shake, and someone would ask, 'Who's kicking that table?' Fortunately, an intern would often reply, ‘Oh sorry, that must have been me.’ I would then say, ‘No problem,' even though I knew it was my leg acting strangely."

It was a significant decision for Janneke to share her diagnosis.

“I had my own office, and a colleague occasionally worked with me. If I had an appointment with the neurologist, I'd say, 'I'm seeing Dr. Vibration Bone again.' When she persistently asked what was happening, I finally told her, requesting her discretion. I also confidentially told HR but wanted no one else to know, not even management. At first, I needed time to come to terms with it myself. I told only close family and friends, swearing them to secrecy. My biggest fear was losing my cognitive abilities.”

I used to live in fear that people would think my brain wasn't functioning properly anymore. In the beginning, I set high demands on myself, pushing myself to ny questions correctly as possible in TV knowledge q inually raised the bar, even ordering myself to have at least five correct answers in memory-based quizzes. It became a bit of a compulsion. At night, I would lie in bed listing all the muses, always testing to see if my brain was still working. It was exhausting, not just for me but for those around me as well. The fear of losing my mind consumed me.

My mother suffered from Alzheimer's in its most severe form for ten years, confined to the most intense care department. I was terrified of becoming like that until I realized that dementia and Alzheimer's were two different terms that people often use interchangeably, me included. While any brain damage is a form of dementia, and seven out of ten people experience this, Alzheimer's is an entirely separate disease from Parkinson's dementia. With Parkinson's dementia, you still recognize your loved ones, and you don't lose your mind. You may struggle with finding words or multitasking, but that's entirely different from Alzheimer's. Unfortunately, it is still possible to have both Alzheimer's and Parkinson's, but that's an incredibly unlucky combination.

Now that I understand the difference between Alzheimer's and Parkinson's dementia, I feel much calmer. The overwhelming fear has subsided. I've even had my children promise to warn me if I ever become mentally unable to function properly, assuming I won't realize it myself. This understanding has set a clear boundary for me, and as a result, I now feel more at peace. I can focus on other things I still want to do in life.

In August 2022, Janneke lost her job due to her condition. “I began working halfdays, but even that proved too much. Soon the company terminated my employment.”

Janneke also suffered from other health issues, including stomach and bowel problems, neuropathy and dystonia in her feet complicating her Parkinson's treatment. After reading about injection botulinum toxin to paralyze the nerve of the muscles, she wanted to try it out. To get this injection she had to have an MRI first to check for possible complications.

Unfortunately, they discovered that she also had a hernia. And now, because of the dystonia, the Parkinson’s, and her Parkinson's medication they preferred not to operate. They injected the vertebra with prednisone and anti-inflammatories and heated the nerves. A painful treatment. Then it turned out that I have six lumbar vertebrae, a 'normal' person has five. There was some doubt whether they had injected into the correct vertebra. They did another injection. It did nothing again. Another pain specialist injected it for the third time and later another for the fourth time. Usually, they only do this once. I was done with it. “They injected my vertebra, heated the nerves, but nothing worked. Now they're considering Botox toxin injections, but I'm worried about walking – it's incredibly important to me.”

The pain Janneke experiences is relentless and exhausting. “At night, I use a hot water bottle on my feet, which helps a bit. I tried ointment, but my neurologist explained it wouldn't work. My brain is sending meaningless pain signals, and you can't put an ointment on that. It makes sense when explained.”

Janneke likens the condition to a broken phone connection. Your brain is sending pain signals to your nerves and body and can't stop.

Muscles and nerves are trying to call your brain, but nobody answers. The connection is closed, the line is broken.

“Picture it this way: my toes are calling to my brain, but nobody answers. They're just screaming -hello, hello, I want to wiggle again.”

Janneke authored a book about living with Parkinson's, titled 'Dagboek

From the day of her diagnosis, she began to document her experience in a notebook, with raw and unfiltered honesty. While she read other books about Parkinson's, she found them either too medical or portraying a victim's perspective. Janneke wanted her story to be pure, honest, and relatable in its sadness. She opted to publish her diary as she wrote it, her authentic story.

es her unique s, focusing on between different ase. Her positive ough her writing. ntrollable, but she ce of choosing one's

Readers have responded with questions and curiosity about her current condition. Janneke continues to write in her notebook and doesn't rule out a sequel in the future.

She maintains a personal website, Jannekeschrijft.com, primarily hosting travel blogs. When she and her husband, Bart, travel, she blogs about their adventures. Though the site does not focus on Parkinson's, she considers expanding it to include information on living with the condition.

Humor plays a significant role in Janneke's life, often adding a light-hearted touch to her experience with Parkinson's. She enjoys engaging with people in her village, reading her children's books to local schools, and maintaining her positivity. When schools ask me to read out of the book that's so much fun to do. I tell the kids that there are so many stories in my head that the doctor said I must get them out, otherwise, my head will explode! The children nod in understanding.

Her book includes reviews from renowned personalities like Paul van liet and Stefan de Walle, who knew her personally through her work at he Royal Theater. The connections and memories with these individuals are dear to her. She often spoke to Paul van Vliet. For my work I took care of arranging full busloads of visitors to see his performance, but besides the work-related things, Paul and I always talked about anything and everything. He could tell so beautifully with his beautiful voice. He lived around the corner from the 'Schouwburg' (theatre) and was always coming over. Now I miss our conversations but cherish the memory of him. Just as I cherish his warm words he wrote about my book. The funny thing is that I never really tell anything about myself. I talk easily but rarely about myself. In my book I tell everything and I'm painfully honest. People around me know now how I am doing.

I also walk every day. As soon as I wake up, I feel like 200 years and everything is hurting, and then I carefully take the first steps. It looks like I am Quasimodo, but as the day goes by, I start to feel younger and more flexible again. Then I say to myself. Hey, look at me, I'm still doing alright. Until I collapse again in the afternoon or evening, and I feel 200 again.

Unfortunately, I often become overactive. That is sad to see and a reason for me to consider DBS. It remains difficult to have the medication properly absorbed with my stomach and intestines. I've done a lot of hiking trips in my life, and they're all stuck in my head forever. Memories are so important. I try to keep walking. In May we went to visit Iceland and my dream is to walk the West Highland Way in Scotland. There is always something on my schedule what I still want to do.

DespiteherstruggleswithParkinson's,Jannekeremainsactive,embarkingon hikingtripsanddreamingofnewadventures.Shestressestheimportanceof keepingmovingandhavinggoalstolookforwardto.

Availableeverywhereonlineandinbookstoresorviabol.com: https://www.bol.com/nl/nl/p/dagboek-van-een-triller/9300000109255584/

My children, my grandchildren, my husband, my girlfriends, the city

The Hague, it all makes me happy. I am also a huge Francophile. I love France. I love writing. I love the mountains. And I also love chocolate (Ha ha). I have a very big imagination, which secretly I like a lot. I love to come up with the craziest ideas for my grandchildren.

Sitting on a terrace I also like to watch all those people passing by. I see a man who is wearing what his wife has put down for him because it matches her outfit. Busy businessmen, brand new parents with tired faces with twinkling in their eyes. Giggling teenage girls and an old couple, still holding hands. In my mind I give them numbers. It has nothing to do with whether they are beautiful or have nice clothes on, but more about how you walk by, how you look and whether you are a little well-groomed. Don't be afraid, I rarely give low figures.

And then suddenly I realized. What if I walk by a terrace myself and there is a crazy person like me, what figure would I get. So, I always try to walk by a terrace as nice as possible to get the highest possible score. That's not as easy, so I am using my extra friendly smile ;-) I can do anything in and with my mind. I hope it stays that way for a very long time. Sometimes it helps me to think ugly things about someone. For example, if I'm overactive or talk a little more difficultly and when they think I'm drunk I let them know clearly and disapprovingly how it feels. I am going to think all kinds of things about someone like that they are definitely not going to draw full houses with that spiky hair or weird haircut, horrible choice of clothing or g s

“I enjoy coming up with new things like a scavenger hunt for my grandchildren, a game circuit, a witches' afternoon, or a princes' tour. So much fun to do. When I was young, I got scared of my own stories. That's why I also like to write psychological thrillers. A book with such a nice sultry atmosphere. The first pages have already been written!”

The presentation of "Dagboek van een Triller" (Diary of a shaker) took place on World Parkinson's Day, and Janneke gave a wellreceived book presentation at a library, which was overbooked due to her unique and humorous approach.

She plans to continue educatin through her writing and prese prejudices and inform others a providing an enjoyable experi Her next presentation is sched November 16 at the De Lier lib

ability to create such engaging content, especially considering your battle with Parkinson's – a condition that almost seems forgotten in the presence of your vibrant work. I would relish the opportunity to interview you someday, right here in your own magazine!

I believe many readers would find it appealing, and it's an honor you certainly deserve. Of course, you'll have to handle the formatting yourself, with a playful wink.

What I also appreciate about your magazine is how the reader can engage with it at any pace, easily picking up where they left off. The recognition and shared experiences found in the stories of those grappling with similar challenges, even if their approach or insights are new or different, creates a compelling connection. Your courage in creating this magazine deserves sincere admiration. You never seem to complain; instead, you manage to spark enthusiasm for your work. I sincerely hope you'll continue to produce this magazine for many years to come. Just remember, as dedicated as you are, don't forget to take a moment for yourself now and again.

Enjoy life with Parkinson's!

Woman & Parkinson Event - June 16, 2023 at Recreation Park De Dikkenberg

Online magazine "Geniet van het leven met parkinson" set up a Woman & Parkinson Event which took place on June 16, 2023 at Recreation Park De Dikkenberg at cafe Schaapskooi De Dikkenberg.

“It is important to get more attention for women who are living with Parkinson's. Until recently, the differences between men and women living with Parkinson's were unknown. And there are definitely! Think of hormones, menstruation, pregnancy and menopause. On this event the women connected and could talk about women specific problems with each other. In the

Good

this event an interesting presentation was given by Annelien Oosterbaan and Willanka Kapelle of the Woman & Parkinson Research at the Radboud UMC in Nijmegen.

Make-up artist Wilma Scholte let the women shine on this day. The ladies got also a photoshoot and had the time of their lives on this day.

Hans Louwerse of Rock Steady Parkinson Boxing gave a lesson parkinson boxing to the women to relax and loosen the muscles.

At the end of the afternoon a yoga session with Dominique Prins-König of Yoga4Parkinson as a beautiful ending of the day.

Thank you to our volunteers; the photographers Laura v/d Maas and Kees Ruigrok. Thank you Els Haring and Kees Ruigrok for the hand massage sessions, sponsored by Oriflame.

And at last but not least the beautiful products of Always, Olaz, Elmex, Etos W Oriflame, Berg's Bakery, Rituals, amon

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 the magazine together, interviews the people, writes the stories and turns it into a beautiful 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

Questions, compliments, complaints or seen a mistake?

For tips, request interview, submit articles or place advertisement. Mail to info@jowija.nl

ENJOY LIFE. is part of: Jowija Marketing & Events.

Disclaimer: 'Enjoy 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 magazine.