An interview with Wendy van Wijk-Lugthart from the magazine Geniet Van Het Leven Met Parkinson July 10, 2023 by George Ackerman, Ph.D, J.D.
Biography
In 2017 I have been diagnosed on the age of 47 years with parkinson disease. I am now 53 and one year ago I initiated an online magazine called Geniet van het leven met parkinson (enjoy life with parkinson). 4 times a year a new magazine will come out. And since this year I am organizing a Woman & Parkinson Event, which will take place once a year as of now.
Please tell me a little about your background and what got you involved with awareness.
Six years ago on the age of 47 years I have been diagnosed with Parkinson (diagnosed in May 2017). I am now 53 years old. After my diagnosis I start working voluntarily on all kind of parkinson projects in the Netherlands. One year ago I decided that I want to make something from my own and I started to make my online magazine. It is called Geniet van het leven met parkinson (enjoy life with parkinson). As I had already been interviewed by glossy’s, radio and TV about my life with parkinson I decided to make my own magazine. I worked 10 years for the company Procter & Gamble as a marketing assistant in which I learned a lot about marketing and also became my passion. My passion is also to make something in Canva for my readers which I can combine with the connecting talks to my fellow sufferers, write their stories and share it for them. And give them a story with a lot of pictures and a nice layout which is nice to show and to keep. Also you can find in my magazine interviews with neuro scientists, blogs and other articles. All my ideas I can now use for my magazine. Four times a year a new magazine is coming out. On June 30 issue no. 4 was launched online. You can find my online magazines on issuu.com/genietvanhetleven.
Above this I also arranged this year a Woman & Parkinson Event (25 women were on the event) and in my next magazine of October 1, you will find a women special about parkinson with the women who were attending and more information about the research done till now. The 2nd Women & Parkinson Event will take place next year.
Can you tell me more about your magazine Geniet Van Het Leven Met Parkinson?
I am doing this all alone. So I make the interviews, I make pictures, I write the articles and I am my own graphic designer for the magazine. I share the magazine on social media and the Issuu platform. And taking care of prints of 100 magazines on paper. I am all-in-1. I am searching still for companies who wants to sponsor my magazine, to make it free of costs. I have now just 1 advertiser. I am carrying almost all the costs myself. And that is a lot. Think about the costs for Canva and the Issuu Platform. The travel costs to the people I interview. I always print 100 magazines on paper to give a hard copy to the people who are in my magazine but also to create more awareness for my magazine. And all the working time I spend on it.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I find it very important to feel connected with my fellow sufferers and let them tell their stories. And I have a passion to create something where I can use my creativity. And the nice meetings with my fellow sufferers by which I feel more connected. And the beautiful reactions I got from people who are reading my magazine. They are really waiting for my next magazine. It gives them recognition and feeling connected. People who are just diagnosed are happy to read my magazine to read the stories of the people and how they have gone further with their lives and get some tips & tricks. I am writing the stories on my own positive way. Just tell the story how you deal with it. How can you still enjoy your life. And also very important to get to learn each other through tellling the whole stories and by doing this we get more connected. People are getting a lot out of it by reading these stories.
I find it important to share information from the scientists. Last edition you can read the article about Wilma van de Berg. She is neuro scientist in Amsterdam UMC, but is also the head of the Dutch Parkinson Scientists and she is on the board of the Parkinsonalliance Netherlands. I find it very important to share these interviews in an article which everybody can understand. And good to know what scientists are busy with. We want to know which researches takes place. What are they researching and how can it help us, what can it mean for the people with parkinson. Or how can they end parkinson. We want to follow the traject where they are searching for a medication. It is going about us, so share it with us.
What type of goals do individuals with Parkinson’s have when working in the field?
My goal is to make every time a magazine which my fellow sufferers likes to read, tell the stories they like to read and get more readers. Just thinking about it all the time what will be interesting. And by making this magazine we get more connected. But also to create more awareness. And through my woman and parkinson event to meet each other live and feel more connected with each other but also topics to be shared in my magazine on which women still wants to ask attention for.
I got recently the question why a magazine and not a booklet. For me the magazine is more living and you tell the stories of other people living with the disease. I always want to do something for others. And in a magazine I can be creative both on the lay-out as on the articles for in the magazine.
When is the magazine published?
Once a year a woman and parkinson event. 4 times a year a magazine.
What effect can it have on Parkinson’s fighters?
Through my magazine also the parkinson’s fighters gets their stage. I am giving them an opportunity to tell their story in my magazine, which is now read by 2000 a 3000 people per magazine.
What would you like to see as a future goal for your magazine?
That much more people can find my magazine and will read it. I would like to get more sponsors so I can keep it free for my readers and for me free of costs to make it. And if I get enough sponsors I can let the magazine translate in English so that much more people can read it, if people from other countries are interested. And what makes me more happy is if a company wants to publish it and take care of the total costs ofcourse. Or just gives me for free 100 hard copies to give it to some people.The people which I gave a hard copy of my magazine are very happy with it. They like to read it, but they would love to have it on paper as it is easier to read it and they find it such a beautiful magazine to keep. And with the bigger font it is also easier to read. It is just like a book with all the pictures in it and especially designed by me, which gives it a special look.
What events do you participate in?
I organised my own event this year a Woman and Parkinson event of online magazine Geniet van het leven met parkinson. Few years ago I organised the book presentation of Ending Parkinson Disease the Dutch version with speakers and writers Bas Bloem and Jorrit Hoff. I spoke on this book presentation also on the stage. And I attended all the 2 times on the World Parkinson Day dinner organised by the Parkinsonalliantie Nederland. On one World Parkinson Day I spoke live in the radio studio of RTV Utrecht. In Corona time RTV Utrecht visiting me at home to interview me. Put it on tape and which people could see later on television of RTV Utrecht.
How can someone get in touch and sign up to help? What is your website?
My website is www.jowija.nl and to get in touch they can email me on info@jowija.nl or find me on social media. I have a special facebook group: online magazine Geniet van het leven met parkinson.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“Love yourself, do the things with passion and feel happy with the people around you.
Just enjoy your life by starting every new day with a smile!”