An interview with Monique Bosman, World Parkinson Ambassador: A VIPP (Very Impatient Person with Parkinson’s) on January 2, 2025.
Biography
Please tell me a little about your background. My profession was mainly software testing. I loved working in a team with young people and build something together. Leading up to that, I worked in respectively horticulture (with Round-Up=Glyphosate), secretary, marketing and as an information analyst. I was diagnosed January 2018 at the age of 58.
Can you tell me more about your Advocacy?
After diagnosis, I gradually traded my profession in for volunteer work for the Dutch Parkinson’s Association. This was during the Covid pandemic. From work I silently vanished, sadly enough. But the welcome in the Parkinson’s community was heartwarming and helped me find a new and even better purpose in life. The WPC in Barcelona was inspiring: seeing so many researchers who do their utmost best for us and meeting other Advocates that are still strong after decades of living with the condition.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is research. Like software testing, it is all about analyzing the problems, raising questions and search for valid answers. Research is the only way to find solutions. I believe It is not 1 disease, but a condition with several triggers/causes/contributors. I am convinced we need to work on a clean and healthy environment as well as on interventions to stop the pathological process.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
My advocacy is not so publicly visible. In advisory boards I help select the research to fund. And I am an experience expert to researchers for design, execute and disseminate projects in a workgroup of 30 Patient Researchers. We can help to improve research and to study what is most important to us.
What type of training and how long are the programs?
The Dutch Parkinson’s Association provides a wide range of educational workshops form explaining to newly diagnosed what the disease is to how to plan for the future. For the new members of the Workgroup of Patient Researchers, there is a workshop of 2 times half a day.
What effect can your Advocacy have on an individual with Parkinson’s?
My focus is on the researchers. I hope to inspire them to stay in the field of Parkinson’s, to help us solve this complicated puzzle. And to educate them on what matters most to us.
What would you like to see as a future goal for your Advocacy?
To encourage more researchers to include experience experts (people with Parkinson’s or care givers) in their projects from beginning to the end. And that actively listening to experience experts is a standard practice. So, the rare findings of the smelling of Parkinson’s by Joy Milne or the altitude benefits M.J. Fox noticed are not rare anymore. Perhaps we could find a structural way of gathering these pearls of wisdom/experience.
What events do you participate in?
Wherever I am asked. For instance: in the Education program for new ParkinsonNet participants (a network of clinicians and allied health workers that treat people with Parkinsons’s and have extra knowledge about the condition); Annual Meeting of Dutch Parkinson’s Scientists; World Parkinson Congress; ParkinsonTV broadcasts (https://www.parkinsontv.nl/uitzendingen/gedragsverandering-parkinson/) or public dutch television with Bas Bloem https://youtu.be/R8Ub0aFE9aA?si=_TVYUH2Xo9kSwsSg and about a new drug research (https://youtu.be/p-Tcnv1wIOo?si=AIybeOmeAbZooSaE) .
How does this also assist the caregivers?
My husband joins me to most of these events. For him it is very helpful to have knowledge about Parkinson’s. With knowledge, he can assist me better but also he won’t be surprised by new symptoms, and he is less irritated by them. For the ParkinsonNet education, he joins me in the studio. He contributes in this course by answering questions.
How can someone get in touch? What is your website? My own website (www.moniquebosman.nl) is only in Dutch for the moment and not updated recently. I have written daily reports about the WPC on the site of the Dutch Parkinson’s Association (https://www.parkinson-vereniging.nl/verslag-wpc-2023-monique-bosman). You can contact me via Facebook or LinkedIn, under my own name.
How can others also become advocates for awareness?
Join a patient organization and do visit the next World Parkinson Congress in Phoenix, Arizona, USA from May 24-27 in 2026.
What are your tips for living your best life with Parkinson’s?
I would answer that finding a group of fellow parki’s to talk to is worth gold. If you can’t, the next best thing is to listen to podcasts like The Movers and Shakers or 2 Parkies in a pod.
In your opinion, what is the key to effective advocacy?
To find an organization and activity that really coincides with your personal goals and mission.
How can we better fundraise to support a cure for Parkinson’s?
Make more noise. Not sure how to do that. But I believe as a community and people, we are to nice and friendly. As stated in the book “Ending Parkinson’s Disease” by Dorsey, Sherer, Okun and Bloem, we should find a more visible and aggressive way of demanding attention and funds. Like the HIV/AIDS organization ACT-UP did by wrapping the house of a senator in a giant condom. I am still brooding on an idea to really wake up the Dutch politicians.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Boxing, gym class, dancing, biking, walking. Minimum of 3x weekly an hour of classical exercise. In case I did not reach this: on the rowing machine and cross trainer and weightlifting at home. But for my mental health I perform breathing exercises and meditation practice almost daily. The latter really helped me accept the diagnosis and every new deterioration. It is a continuous grieving process. Through meditation, I do not dwell on the past or worry about the future, I enjoy or make the best of the present.
Why should people who don’t have Parkinson’s care about this?
They themselves or a loved one might be developing this condition as we speak or in the near future. Do not think it cannot happen to you. It can happen to anybody. Just like cancer can. You should be more scared for it than you currently are. It is a horrible condition.
Have you had any family members or relatives affected by Parkinson’s disease?
No, not at all.
If you had one song that would tell us more about you or represent your life, which song would it be?
Always look on the bright side of live by Monty Python.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
It is not about what happens to you, it is how you deal with it.