SYMBYX recently had the honour of interviewing Dr Annelien Oosterbaan, a trained OB/GYN, researcher and woman with YOPD, about the experiences of women with Parkinson's.
When you think of Parkinson's disease, what do you think of? For many of us, the same few things come to mind: an older man with a tremor, shuffling while he walks, stooped posture, and so on. And while this holds true for some people who have Parkinson's, it is definitely not reflective of everyone. And while nobody wants to have Parkinson's, everyone wants to feel seen and heard.
For women, having Parkinson’s disease can feel drastically different. There might be different symptoms, side effects from medication, extra considerations surrounding pregnancy, and feeling pressure to conform with the mainstream narrative of what Parkinson’s “should” look like. It’s becoming increasingly apparent that PD can affect women differently, yet there is so little available research on the topic, let alone practical advice.
Since coming to this realisation, Annelien has embarked on a mission to not only raise awareness of the issue, but to try and make tangible changes to the way women with Parkinson's are perceived and supported.
Here's what she had to say...
Tell us a bit about yourself. Where did you grow up?
My name is Annelien Oosterbaan. I was born and raised in a small village in the south of the Netherlands. I moved to Rotterdam to study medicine in 2001 and have not left this beautiful city since then. I am a 40 year old mother to four kids, and work as an insurance doctor (4 days) and a researcher (1 day). I am part of the research group of Professor Bas Bloem at the Neurology Department at the Radboudumc, Nijmegen, The Netherlands.
What is your formal training?
I was trained as an OB/GYN at Erasmus University Medical Center in Rotterdam and have worked there as an obstetrician for 2.5 years. In 202, I was forced to make career changes because of my health situation.
When were you diagnosed with Parkinson’s?
Dec 1 2016.
How did your diagnosis affect you?
Although PD has significantly affected my career and personal life, I was able to maintain a positive attitude from the beginning. I am a huge believer in the benefit of a positive attitude. Fortunately, I have always been a cheerful and enthusiastic person and Parkinson's has not been able to take that away from me and I will do everything in my power not to let that happen.
I experience living with PD as challenging and the most important thing to keep control for me is exercise. I box, play field hockey at a high level and I am still able to run marathons. It amazes me, after 7 years of PD, that I am still capable of doing all this. My new goal is to finish a triathlon (Ironman 70.3) in 2024.
Why were you motivated to understand PD more from a female perspective? Simply because of my own experiences, being a young woman with PD myself. I struggle with stigma and the image of PD, that is still the image of the old, shaky white man. This makes it difficult to identify with this diagnosis, it feels like I am forced into an old man’s suit. Also for me it was loud and clear: there is definitely a cyclic pattern in PD symptoms in YOPD women. I think I noticed this quite early because I was trained as OB/GYN.
I searched all the literature for information or answers and also discussed the subject with Professor Bloem, but found that hardly anything was known about it. I was extremely surprised. I asked around among other PD women. Most immediately recognized my symptoms, but also readily admitted that their health care provider never asked about it.
This was the moment for me when my “Women and PD’ research plans took shape. It felt like a calling, a logical step, as a young woman and a gynecologist who still has plenty of energy, to start working on this important topic. A subject that needs a lot of attention, because there is a lot to catch up on because it has long been ignored. Something I really cannot understand, because to me it makes so much sense that the different hormonal stages of life affect Parkinson’s symptoms in women.
It has become my personal mission to raise awareness and bring to everyone's attention that Parkinson's disease also occurs in women, and in particular in young women. I will not rest until perceptions are changed and knowledge is significantly increased.
Despite the obvious and “giant gender gap” in PD research, what is the published evidence currently to justify a separate focus on the female experience with PD generally?
This needs no justification. Simply because it is obvious and evident, despite the lack of research. To prove the impact of hormones exists, our team has performed a survey study among women with pd in the Netherlands. Our results (unpublished data) confirm that many women suffer from a hormonal impact on PD symptoms. Also data confirms the cyclic pattern and huge impact it has on the lives of women. And the hormonal impact is just one thing. There are also differences in symptoms, disease perception and needs in care. Together with two fellow women with PD and 3 neurologists, we wrote a paper on the unmet needs of women with PD in 2022 (I. Subramanian et al.). This paper covers most important issues and differences and provides tools and ideas for improvement in care and topics for future research.
I believe we have started a movement of more awareness and interest in the female perspective, and I really hope that more researchers around the world will make this their area of work.
How do hormonal fluctuations surround the female menstruation cycle impact PD symptoms?
Exactly how is unknown, but the theory is that the oestrogen drop that happens after ovulation and before the next period is responsible. Oestrogen would have a protective affect on the brain. Women suffer from more PD symptoms around their period, and notice less benefit from their PD medication.
Is the response to Levodopa different depending on the stage of the menstrual cycle?
Definitely. From a personal view, the few days (1 to 3) before my period, I suffer from tremor and rigidity much more. The response to Levodopa is disappointing, since medication normally keeps me free of symptoms most time of the day. These days it does not seem to be able to control symptoms and I remain to feel shaky all day. This impacts my motor skills and capabilities, and over time I notice the problem becomes more severe due to disease progression. It doesn't hinder me from doing my job yet, but it's an issue that worries me more and more.
What do you know about pregnancy and PD?
Again, there is limited research done. The one thing we know is that 50% of women feel worse because of pregnancy and 50% do not. But whether this is permanently worse as far as Parkinson's is concerned, or only temporarily, that is not known. In the current literature, you find mostly case reports and case series, but no large numbers of pregnancies described nor medical protocols on how to guide women. As a result, giving proper preconception advice is not possible, and health care providers do not really know what to do. This lack of knowledge also contributed to the fact that my own choice to have another baby after my diagnosis was a difficult one. I certainly didn't want my Parkinson's to deteriorate faster as a result. And, of course, I worried about medication use and the baby. But thankfully it all worked out for the best, and personally, I am convinced that with the right care and guidance, pregnancy and Parkinson's go well together.
I am extremely proud and happy that last year we were able to realise my dream of closing the knowledge gap surrounding pregnancy and Parkinson's. www.pregspark.com was launched last summer at the WPC conference. This is a large international pregnancy and Parkinson's registry, and all women in the world with Parkinson's can join. Through questionnaires, they share important information about the course of the pregnancy in combination with Parkinson's, and many share both pregnancy data as well as any significant changes in Parkinson's symptoms and medication use. After birth, information will also be gathered concerning the health of mother and child. This international registry will finally collect enough data to enable proper advice and management protocols in order to guide the young woman with Parkinson's and her loved ones.
If you could design your perfect clinical trial to progress our broad understanding of the topic, what would it look like?
I aim to set up clinical trials both on the topic of the cyclic pattern, as well as the hormonal impact on PD symptoms in perimenopausal and postmenopausal women. International collaboration will enable significant numbers. PD women need to be matched to healthy controls. Potential interventions/therapies should be tested - for example, an oral contraceptive continuous or the use of HRT (hormone replacement therapy), compared to placebo. Also the potential positive influence of yoga and medication, sports, and light therapy on a cyclic pattern in PD symptoms seem interesting to study properly.
What do you hope to achieve in your work for Women with PD?
Close the gender gap, enable guidelines to improve care for women with PD, increase awareness, achieve more funding opportunities for women studies, change the stigma and image of PD, and make sure no neurologist even will tell their female patients again they have ‘never heard of a hormonal impact in PD symptoms’, or that this does not exist.
What is the number one practical change you wish to see in how the community approaches PD for women?
Aside from what we spoke about above, just be kind to people with Parkinson's disease, because we tend to get emotional more quickly, and stress is our worst enemy. So just be kind and patient, that would be helpful.
Are there any resources or initiatives you would recommend for our readers to get involved with?
Please share my registry for women with Parkinson’s that are pregnant www.pregspark.com and in case you know of anyone pregnant, please let them visit my website. Also I hope all women visit www.yopdwomen.com to read ‘In Her Shoes’, an informative little booklet made by, and for, women with Parkinson’s.
Link to the Subramanian et al. (2022) paper: https://movementdisorders.onlinelibrary.wiley.com/doi/abs/10.1002/mds.28921