An interview with Sara Bastiaensen: Road to Finding a Cure on March 1, 2024 by George Ackerman, Ph.D, J.D.
Biography
I got diagnosed with Parkinson’s disease in 2022 at 33 years old. I have a 6-year-old son (Colt) and I live in Belgium. I’ve always been passionate about fitness and exercise even before the illness and though it’s a bit more challenging now, I try my best to just keep moving mentally and physically.
Please tell me a little about your background.
I have one older brother, growing up wasn’t easy because my dad could get very aggressive and there was a lot of domestic violence, then after a few years my dad left. We were still young so we were mostly raised by my mom, she sacrificed so much to give us the best life possible so I wouldn’t be the strong person I am today if it wasn’t for her.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I am just an individual sharing her story/experience with Parkinson’s disease, anything that could help raise awareness about this awful disease.
My passion now is to try and keep staying healthy as much as I can and helping other people with or without Parkinson’s along the way. I got involved in Parkinson awareness just by sharing my own story and I am so thankful for this loving Parkinson’s community, it’s amazing and heartwarming to see how many people reach out from all over the world.
What type of training do you do to stay healthy?
My exercise program consists of a lot of strength training by lifting weights, a lot of walking and physio one time a week. Depending on one’s symptoms but this works for me and it keeps my rigidity somewhat under control and it keeps the mindset right, just keep on moving. Some days are hard but we never give up.
What events do you participate in?
I try to participate in local walks organized to raise awareness and to raise money for research to hopefully someday find a cure for this awful disease. The caregivers are also involved so it can help them understanding every aspect of the disease more by seeing other patients and their caregivers.
How does this also assist the caregivers?
I encourage everyone facing this illness, whether or not suffering from it or being a caregiver and seeing your loved one suffering from it to keep on telling their stories and therefore raising awareness until we finally find a cure.
In your opinion what is the key to effective advocacy?
Effective advocacy in my opinion can be obtained by spreading facts about the seriousness of the disease by keeping track of every individual’s story and spreading proof of the pain and struggles patients and caregivers have to go through both physically and mentally, just proof that we desperately need a cure fast!
How can we better fundraise to support a cure for Parkinson’s?
I believe by bringing more awareness of the different aspects of the disease, we can get more out of fundraising because people will maybe take it more seriously and not think it’s just a tremor.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I try to go to the gym 3 – 4 times a week to prevent my joints and muscles from becoming stiff because I experience more pain when I don’t exercise so as hard as it might get, we just have to keep moving.
Walking is also something that I always loved to do but unfortunately walking is getting more and more difficult now but I try, I always try.
Why should people who don’t have Parkinson’s care about this?
People who don’t have Parkinson’s should care because it can affect anyone at any age and it’s the fastest growing neurological disease in the world, a cure needs to be found and the clock is ticking!
The first contact I ever had with Parkinson’s was that of my own diagnosis and at that time I didn’t even know what it meant. My first question when hearing the news was ‘what does this even mean and what about my future?’. None of my family members nor friends have the disease.
This just goes to show how little people really know about it and how crucial it is for every individual to tell their story all over the world.
If you had one song that would tell us more about you or represent your life, which song would it be?
The song I always felt very close to, even more so after being diagnosed is Life is a song by Patrick Park.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
My final statement to this loving community is that we are never alone, we’re all in this together and while we are striving for the cure, we’re also fighting to not lose ourselves in the journey. Every day rises up with new hope and brings us one step closer to finding a cure