From Intention To Reality
During Covid lockdown in 2020, I stumbled on a vlog post on social media of Sarah King (PT in Austin). She posted daily vlogs about the WPC in Kyoto. This was fun, informative, and really appealing. Since my PD diagnosis in 2018, I believed research congresses were exclusive for scientists. Here I found an all-inclusive congress! So, I wanted to visit the next one. That was during Covid lockdown periods, and it was postponed for a year. Still, I created an image to set my intentions.
Leading up to my diagnosis I had the typical story (frozen shoulder, constipation, loss of smell et cetera). But the search for a diagnosis and how it landed with me was a-typical. First, I waited 3 years after I noticed a tremor in my left leg before I took action. I thought it was due to stress because I experienced a stressful period. After taking extra measurements (extra time for meditation, mindfulness, less demanding projects at work), I noticed during meditation that my tremor was now also present in my left hand. So, I went to my GP with the request to refer me to a neurologist because I was convinced that it was neurological.
It took another 9 months to hear those 3 words: “You have Parkinson’s”. It was no shock to me, as I already knew there was something wrong in my head and nervous system. It just did not have a name.
As a real Beta with an analytical mind - software tester, perfectionist, and control freak-, I now could investigate what it would mean and how I could deal with it. At least it was no MS (from which my mother died), tumor or dementia. I did not cry, not one tear. I simply acknowledged the fact. My daughter was with me at the appointment. She wanted to know if it is genetic. The answer was “No!” which we now know is not as clean cut.
We had the rest of the day off together. Talked about it over a cup of tea and cake in a restaurant and after that we had a lovely day shopping.
I called my long-distance boyfriend and fiancée Marco to tell him the news. I said to him “so it is Parkinson’s after all. You can still back down.” He said: “There is no way back.” As in “we are a couple already, in sickness and in health.”
In the evening, I had a sitting in a community center as an art model for painters. I sat 4 hours in total meditating. So just relax and be present. The next day I told my colleagues and my boss. My boss responded: “Wow, I am shaking on my legs.” to which I replied: “Hey! That is my job.”
A few years fast forward, I gradually worked less hours and shifted to volunteering for the Dutch Parkinson’s Association in several working groups. Mainly focusing on research. At first taking part in trials as a study subject but gradually more as a research partner to represent the patients in study design. Also giving the patient’s perspective in selecting research projects for funds from the ParkinsonNL funding committee. Meeting with fellow people with Parkinson’s, I always feel understood even without words, we know how it feels.
My daughter and Marco’s children were becoming independent. Combined with me stepping down from my job, that gave the possibility for us to live together in one place. We set off to travel this Parkinson’s journey together.
The 2023 Barcelona WPC was everything I hoped for and more. The shear idea that of the about 3.000 people present, about a third are people living with the condition and the rest is trying to find a solution, is awesome.
It brings so much hope for the future and comradery now. We visited the congress with a delegation of 6 from our patient association. We all reported about our experiences from a different angle on our website. https://www.parkinson-vereniging.nl/wpc-2023-barcelona It is in Dutch of course but google can translate for you.
So, my dream did not exactly come to reality. The general idea of sharing my story, however, did come true.
I have presented my journey and views on many occasions. Starting at ParkinsonTV about research:
https://youtu.be/Jl9DXcxwqnQ
At dutch national TV with Bas Bloem:
https://youtu.be/R8Ub0aFE9aA
And as a part of the ParkinsonNet basic training for new members, together with Marco. Live in the studio to cover the lived experience on the psychosocial consequences and challenges.
For ParkinsonNet Marco recorded a video once. About how he saw me changing over time and what effect that had on him. When I saw that video, it was the first and only time I shed some tears. Only after seeing and hearing what he feels, it touched my soul, and I could feel the grief.
Now for the WPC in Phoenix, I am a Parkinson’s Ambassador and proud and honored to be part of a panel in one of the Pre-Congress Courses. How cool is that. To be able to share my personal tips and tricks. Most of the time, I am not nervous when I speak or present somewhere because it is not about me. I am not important. But the role I have and the things I experience are important to share with others.
It is a pity that only few people from our country will be able to undertake the journey to Phoenix. The obstacles are numerous which you can imagine especially with Parkinson’s.
Therefore, I hope we can bring the information and invigorating vibes through new blogs and vlogs from Phoenix!
I really love the inclusivity of the WPC, its mission, the program, and the theme of this edition: Parkinson’s beyond the brain: A (more) holistic approach to PD.
Hope to see you in Phoenix!
Monique Bosman is a Parkinson's advocate. She was diagnosed with Parkinson's in 2018 and currently lives in the Netherlands. Monique has attended past WPC Congresses. She is currently WPC 2026 Ambassador.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®