This World Parkinson’s Disease Week, Veerle will be providing regular blogs about her experiences as a Parkinson’s patient. Diagnosed 11 years ago, Veerle will describe some of the daily challenges of life with the disease. Since no two Parkinson’s patients are the same, Veerle speaks only for herself, however many of the issues she describes will be familiar to many people.
I am a 48-year –old, divorced mum with four children.
When I was 19, my dad died of lung cancer, and 18 years later in 2008, my eldest brother died of pancreatic cancer. I thought I knew what was important in life and tried to enjoy my family and life as much as possible.
In 2010, when I was 37 years old, I was told that I had Parkinson’s disease after suffering with back problems for a few years. At the time, it was quite a relief considering the family history! I didn’t immediately realize the seriousness of the situation and certainly not the terrible side effects of the dopamine agonists, which although detailed in the documentation and highly researched, were not mentioned by my neurologist.
I quite quickly reached the maximum dose of prolopa (medication to control Parkinson’s symptoms) and yet it was not working. After extensive testing, I became a patient of Professor Nuttin, who gave me the confidence to have a Deep Brain Stimulator installed in May 2017. I haven’t regretted it for a second and it gives me the opportunity to focus on doing what I love: being a patient advocate for others who no longer have a voice – often literally.
Becoming a patient advocate
In 2015, I had the opportunity to follow a European training course with patients and patient advocates from many countries and covering many pathologies. We learned about the development of medicines and I became a patient advocate, which means that I always put forward the perspective of the patient, not only those with my own illness, whether we sit together with governmental, local partners, startups or European politicians. I like to explain the unmet needs of people living with Parkinson’s Disease. After my graduation as Eupati fellow in December 2016, I became a co-founder of the Belgian Eupati organisation, and sit on several advisory boards at home and abroad. Since last year, I have been part of the great team of RaDiOrg, the Belgian umbrella organisation for people with a rare disease (of which young Parkinson’s is one). This occupies most of my time.
I am grateful for this new opportunity I have been given and am trying to enjoy every day with my children and working constructively with others. I understand that positivity is important, and I also experience a great need among fellow patients to better understand their illness and share their fears (not only in these COVID times!).
Reflecting on the past years, I am particularly struck by the incredible solidarity between the Eupati fellows as well as just how many people are working hard in both academic and commercial settings to find a solution for (not only) our disease.
It makes me hopeful for the future.