An interview with Annelien Oosterbaan, MD/PhD, a young woman with Parkinson’s disease on a mission! on January 25, 2024 by George Ackerman, Ph.D, J.D.
I am a 40-year-old mother of 4 (2, 8, 10 and 12 years old) and together with my boyfriend Govert live in Rotterdam, The Netherlands. I come from a warm and loving family, and I was born and raised in a small village in the south of the Netherlands. I grew up with my two sisters, and my entire childhood I experienced nothing but happiness. At age 18 I went to med school and at age 35 I finished my medical specialization and started my job as a gynecologist at the Erasmus University Medical Center, Rotterdam, the Netherlands. At age 33 (December 1, 2016) an unexpected Parkinson’s disease diagnosis disrupted my thus far uncomplicated life.
My family was devastated because my dad, also an OBGYN, was diagnosed with Parkinson’s disease just 3 months before me and felt it was all his fault. I reassured him not to feel sorry because it was out of his hands and the genetics in PD are still unclear, and I would never blame him anyways. He is my dad and will always be my hero.
I experience living with PD as a challenge, but I do not shy away from that challenge. From the beginning I have been able to maintain a positive attitude.
I try to turn the bad into the good by not worrying too much and taking life day by day. Because in the end, no one knows what the future holds. I enjoy life as much as I can and am grateful for all the moments of happiness. Because happiness is in the smallest things, in every hug, every kiss and every smile of my kids, in the sight of a beautiful evening sky, in a satisfactorily completed run, a nice family dinner. Govert, the love of my life, and my closest family mean everything to me, and they are the main reason for me to never give up. I may have Parkinson’s, but Parkinson’s will never have me since I am still a mother, a lover, a sister, a daughter, and a friend. For that reason, for my closest ones who support me in my journey unconditionally, I will never give up fighting.
Sports is my #1 therapy; I completely believe in the positive effects of sports in PD. Boxing seems to have the most beneficial effect on me considering my Parkinson’s symptoms. But I also run marathons (complete), play field hockey at a national level, and currently am in training for a triathlon.
Can you tell me more about your organization?
I am involved in many organizations in terms of work and in terms of raising awareness of Parkinson’s disease.
- Ambassador for Parkinson NL, the largest and most important fundraiser in the Netherlands
- Head of the Women and Parkinson’s research group: trained as a gynecologist and being a young woman with PD, I initiated this project and work together with Bart Post (neurologist) @ at the neurology department of Professor Bas Bloem, Radboudumc, Nijmegen, the Netherlands. I love to work there because it’s an inspiring environment.
- Staff member of the Young and Parkinson’s (YEP) team @Radboudumc. This team operates out of the Radboudumc, which is a PD center of excellence. We are leading in designing and optimizing care for people with Parkinson’s and together with people with Parkinson’s disease (in co-creation).
- Attributor to the booklet ‘In her shoes’ www.yopdwomen.com , written by and for women with Parkinson’s disease.
- Self-named ‘Parkinfluencer’ on a mission.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to do as much as I can to raise PD awareness, change stigma, and push research forward by doing research myself and fundraise for research and PD care, in particular for young onset patients and YOPD women. I do everything in my power to bring attention to the fact that even at a young age you can have Parkinson’s disease. The ancient image of the old, shaking, white man should change for good as far as I am concerned. Because of this, young women cannot identify with PD and there is even a sense of shame at play.
To raise awareness, I speak out publicly. I have been interviewed by various magazines, newspapers, websites, international podcasts, and webinars, and have been on national (Live) television several times. I even had my own documentary last December. I lecture and teach, including on the topics of work, sports and women’s issues and Parkinson’s.
I try to help out as many fellow YOPD patients by talking to them, informing them, motivating them. I am always available to everyone, for questions, advice and for a pep talk.
I hope my efforts will lead to more knowledge and a better quality of life for Parkinson’s patients. And of course, I hope most of all for a cure.
I want to make sure health care providers AND women living with PD are aware of the gender differences in PD and the specific problems women experience. Also, the different needs of women in care are important to emphasize.
What type of goals do individuals with Parkinson’s have when working with you?
I work together with many other YOPD patients in the field of care. We want to innovate and improve care, and make sure it is tailor-made.
The women with PD I work with are also many, and in particular they are all around the world. In the past years I was blessed to get to know so many powerful, clever, and active women in the PD community. This gives me even more motivation to continue what I am doing. In general, I would love to see even more women raise their voices and unite, educate, and help each other and join research projects as much as they can. This is needed to close the gender gap in Parkinson’s research and to be able to catch up in terms of knowledge.
My mission feels like a calling, I simply must do this, for I am as well a doctor and a patient, and I can combine both worlds. Also, I have still got the energy to work full-time. I sincerely hope to keep this up for a long time.
What type of training and how long are the programs?
The YEP program will continue for at least 4 years from now. My fundraising efforts as an ambassador of ParkinsonNL and my Parkinfluencer efforts will never stop, until Parkinson’s is stopped.
My research project is ongoing. It focusses on YOPD women, their specific needs, and the impact of the different hormonal life phases on PD. Think of periods, pregnancies, and menopause. But also, the impact on self-image, sexuality, and their social role.
Important to mention is the international pregnancy registry I initiated, www.pregspark.com. This is a global registry to gain knowledge concerning the safety of a pregnancy in women with Parkinson’s disease. Women can register themselves. My goal is to collect enough data to be able to write guidelines and management protocols, and to support health care providers in care. But the main reason for me as a patient to start this registry was the lack of information I had when I decided to have another baby in 2022. This was a difficult decision and I want this to improve for other women in the future. Our data will provide the information that is currently missing, so that women with PD can make a well-informed decision when it comes to pregnancy with PD.
What effect can it have on an individual with Parkinson’s?
Improve care, improve knowledge, and provide information, improve their quality of life. Show others that life does not end with a PD diagnosis. You can still enjoy life, have a career, practice sports and fall in love. I try to transfer my positive energy to others, helping them move forward.
What would you like to see as a future goal for your programs?
Women and Parkinson’s should be a topic that is known to everyone and has everyone’s attention. Both the fact that women get Parkinson’s and the knowledge that comes with it to take good care of them.
I would like the project to grow, and through international collaborations, this topic should keep growing like a snowball. The goal is to get more and more scientists in the world to come along and explore this topic.
How does this also assist the caregivers?
Our YEP team in Nijmegen also focusses on care for caregivers. We provide programs to assist them and to unite them to be able to share experiences. We learn from them to improve care for YOPD patients and their families. Since, Parkinson’s is not something you have alone.
How can someone get in touch? What is your website?
Linkedin: Annelien Oosterbaan
How can others also become advocates for awareness?
Raise your voice, tell your story, and never feel ashamed. We are worth at least as much as others.
In your opinion what is the key to effective advocacy?
Storytelling, speaking out, educating others.
How can we better fundraise to support a cure for Parkinson’s?
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Exercise and do things that make me happy. That’s all.
Why should people who don’t have Parkinson’s care about this?
Because it is the fastest growing brain disease in the world, and in case we don’t try to stop it now, everyone will know a close person with Parkinson’s in the future.
Have you had any family members or relatives affected by Parkinson’s disease?
My dad and my uncle (his brother)
If you had one song that would tell us more about you or represent your life, which song would it be?
It’s a beautiful day – U2 When you believe – Whitney Houston
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Never stop moving, and never give up! Because no one knows what the future may bring, and I believe together we will find a cure!
Quoting Whitney Houston:
There can be miracles
When you believe
Though hope is frail, it’s hard to kill
Who knows what miracles you can achieve?
When you believe, somehow you will
You will when you believe.