Marc’s story: From Parkinson’s diagnosis to patient advocacy campaigner
My name is Marc van Grieken, and I was diagnosed with Parkinson’s disease in 2006 at the age of 49. At the time, I was a keen runner and had completed the New York Marathon in 2003. However, in preparation for my next marathon, I noticed that my right leg occasionally just ‘stopped working’. After several visits to my GP and a physiotherapist, I was referred to a neurologist. I remember him saying after some 5-10 minutes that he thought I had Idiopathic Parkinson’s disease (IPD).
To be honest, I didn’t know what Parkinson’s disease was and what impact it would have on my day-to-day life or on the lives of my family. I struggled with accepting my diagnosis, and denial was easier. I didn’t want people, my family, friends, and colleagues to know about my Parkinson’s diagnosis because I thought they would treat or see me differently.
Looking back, I know that I was depressed, probably for a long time and the hardest part of my journey was slowly coming to terms with Parkinson’s and understanding that it was not just my life, but also the life of those close to me, that was affected.
I was in the middle of a positive career, so I had to learn to accept possibly being perceived differently, especially within a work environment. I loved my job, and I still do, but it was hard to navigate that change in perspective especially as my symptoms progressed over the next 10-11 years.
A huge turning point for me was when I turned 60. I said to my partner that I wanted to try and raise £60,000 for Parkinson’s research. I knew this was a huge undertaking but believe it or not, the support was so unbelievably strong and positive. People were organizing events in my name or in support all over the UK. It's in these moments that you truly see how people perceive you, and it's incredibly heartwarming.
As I move forward, I continuously meander between being ‘defined’ as a landscape architect or as someone living with Parkinson’s. Slowly, but almost surely this will increasingly move to the latter as I continually find myself defined not just as an individual living with Parkinson's but as someone who can advocate for those who are starting their own journey following diagnosis. I now see myself as a Parkinson's warrior and campaigner, I want to push boundaries, representing the broader Parkinson’s community, lending a voice to the cause, and challenging the status quo.
My involvement with the Patient Engagement Council for Parkinson’s Research (PECPR) stems from my commitment to promoting research into Parkinson’s disease. The PECPR unites Parkinson’s patients and supporting organizations worldwide and includes representation from the Parkinson’s Foundation and Parkinson’s UK.
Because of this group, I have been able to connect with like-minded individuals and am able to help progress research around this disease. From my perspective, it's about restoring individuals to better health for themselves and equally for those affected around them. At the very least, trying to prevent further deterioration.
It still surprises me that despite Parkinson's disease being the fastest-growing neurological condition globally, the funding dedicated to researching this disease is very limited. I have always been of the view that people living with Parkinson’s must be at the core of research, which is why it was only natural for me to be part of the PECPR. It is not just about the science, it's about the people living with the disease and those affected around them.
As we continue our work, I envision a future without the stigma surrounding Parkinson's. A future with much greater awareness of both personal and societal costs. A future with greatly increased funding for research should in turn lead to new treatments improving our quality of life and ultimately a cure.