Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller, at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
Women living with Parkinson's disease have certain needs that differ from men and that should be recognized by the medical community. However, they are often treated similarly, ignoring the unique needs and the stages of women's lives. These include menstrual cycles, pregnancy, perimenopause, menopause, and postmenopause, as well as different motor and nonmotor symptoms, other health conditions, and family, psychosocial, and occupational issues.
Recognizing these unmet needs, six women healthcare professionals, three of whom have PD, published a paper laying out a path forward to address the problems. I spoke with co-author Annelien Oosterbaan, who has young-onset Parkinson's disease and is an obstetrician-gynecologist researcher at Radboud University Medical Center in the Netherlands, and a mother. I asked her why she wanted to participate in bringing out this paper.
Dr. Annelien Oosterbaan 1:49 Well, all the facts you've already mentioned. Since I am a young woman with Parkinson's disease, and I'm an OB-GYN, I thought I just had to do this. And since I noticed myself, I had problems with my hormonal fluctuations and my Parkinson's symptoms before I became pregnant, and I've been talking to certain neurologists about this, and I noticed that they didn't really know that much about this topic. Then I started looking into literature, and I found that was a large research gap, so I thought it was necessary to do this kind of research to fill this gap. And since I started doing this research, I met all these other women—some have Parkinson's themselves, and other women we wrote this paper with—and really only emphasized the need for this kind of research even more, and that's the reason why I'm doing it.
Dan Keller 2:45 So, it sounds like these issues and problems are fairly common with women with Parkinson's.
Dr. Annelien Oosterbaan 2:53 Yes, I've been talking to lots of other young women and noticed they all have the same kind of problems. And also a recent survey from the PD Avengers also found out that almost 80% of young women have the cyclic worsening of Parkinson's symptoms, like mostly the week before they get their menstruation, so it's really important to find out what we can do about it to improve quality of life of these young women.
Dan Keller 3:23 What are some other issues that affect them?
Dr. Annelien Oosterbaan 3:26 Yes, of course, there are all other phases of life, like pregnancy, perimenopause, menopause, and postmenopause, that are phases of life that influence also the Parkinson's symptoms and the kind of care we need for our Parkinson's. But also women have other presentation of the Parkinson's symptoms—like we suffer more non-motor symptoms than motor symptoms than men, we've got more psychosocial issues—so this is a different kind of care that's needed for women, and it's another management and treatment that's needed.
Dan Keller 4:08 Are there disparities in diagnosis and treatment of women versus men with PD?
Dr. Annelien Oosterbaan 4:16 I think most major trials and medication studies, and the studies that management of Parkinson's has been defined based on men, and we are no men. So we have different body composition, different biological and genetical background, so you can imagine that it should be different, but there's just really a lack of research on this topic. So we just get the same amount of levodopa, the same kind of and type of medication and care, but this should really change in the future. But first we need to do more proper research on this topic, so we can define what we need.
Dan Keller 4:59 Are women neurologists or movement disease specialists in general any better at addressing the needs of women with Parkinson's compared to their male colleagues, or are they pretty much in the same boat?
Dr. Annelien Oosterbaan 5:13 I think the knowledge they got on this topic is maybe comparable to men, but I think the women with Parkinson's may have some problems or shame on talking about female issues with their neurologist, so it might be easier in the case the neurologist or movement disorder specialist is a woman to talk about gynecological issues. But that shouldn't be the case, because the doctor is a doctor, but it can be a problem for women. It's also for women that visit a gynecologist—some prefer visiting a female gynecologist.
Dan Keller 5:54 Is attention paid to the social and cultural context in which women live and their expected responsibilities?
Dr. Annelien Oosterbaan 6:03 We don't pay enough attention to these kinds of issues, because, like in the small Brazilian study, women with PD, despite their possible change in performance and ability, often compete during their usual activities, including care of family and home. Women may encounter significant caregiving responsibilities in the family, and also along with occupational and other competing demands, and it differs between cultures or different life stages, and it's different from men. And I don't think we pay enough attention to these differences between men and women.
Dan Keller 6:43 And you brought up different life stages. So, do treating physicians or healthcare professionals need to recognize when a woman is transitioning from one stage to another? I would assume it's not just based on age. People vary.
Dr. Annelien Oosterbaan 7:00 Of course. The hormonal stages in phases in life are complicated in women and lives of women, and even more in women that suffer from Parkinson's disease. But also the phase in life, from having young children to having teenage children, or studying children, or maybe later having older parents to take care of, and these kinds of phases also determine the amount of stress you feel, or the lack of sleep you have. This all influences also the Parkinson's disease. So you should pay more attention to these problems.
Dan Keller 7:35 Does levodopa therapy replenish dopamine enough in the brain that it overcomes some of the particular problems that women are having, or are these more sort of like non-motor symptoms, which levodopa does not remediate?
Dr. Annelien Oosterbaan 7:53 Levodopa is a good medicine, of course, but it doesn't help the psychosocial issues like distress or negative self-image women can have, or impaired sexual intimacy, or a feeling of not being heard, or downplay symptoms, and also women feel they have less social support. Like, the treatment of Parkinson's, of course, medication is important, but there are all other things around that are also really important to pay attention to, so I think it's not sacred to levodopa, and there's much more other things women need.
Dan Keller 8:31 You and some other Parkinson's experts have recently published a plan identifying a lot of these problems and putting out a call for action on the issues that you identified. What does that plan entail?
Dr. Annelien Oosterbaan 8:46 The call to action is actually a little bit widespread. First of all, to create a framework to address the gaps and establish global collaboration to answer key research questions, including drug and device studies that include women and address genetic and hormonal considerations, because there's just really a large research gap. Also, we would like women to get educated, so women with PD, to empower them about how to communicate their symptoms and needs, to make sure more women engage in research and organize as a community in support of one another. And also we think it's important that tools will be developed, so women can track their unique motor and non-motor symptoms, as well as psychological and social support needs, like in a specific symptom diary. Of course, there already exist menstrual cycle diaries or apps, and I think it would be great if we could add these other symptoms and problems to this tracker, so women can track their symptoms and needs and share this with their healthcare providers.
Dan Keller 9:57 How do you expect to spur change in the professional community? Are you developing programs with gynecologic societies or neurologic societies?
Dr. Annelien Oosterbaan 10:09 First of all, of course, we wrote this paper to get this subject under attention of all healthcare providers—neurologists, movement disorder specialists, and gynecologists. That's the first step to make people aware, and what we want to do is try to get this topic internationally on the agenda of research to make sure we fill this gap. For example, we want to start an international pregnancy and Parkinson's registry. That's a really clear example to fill this gap, to register all pregnant women with Parkinson's to see what's the effect on the mother and the child, to make sure in the future we can write some management advice or guidelines, because it's lacking of any guidelines for women with Parkinson's, whether it concerns menstrual or hormonal fluctuations or pregnancy or all the other psychosocial or social needs women have. So I think first we need to get more research done, and then try to write some guidelines for all specialists around the world.
Dan Keller 11:17 One of your co-authors on the paper was Soania Mathur, and we did a podcast with her a while ago about family issues and talking to your children about Parkinson's disease as a parent. So, how much attention will be focused on the family in these sort of efforts?
Dr. Annelien Oosterbaan 11:39 Well, that was not really the topic of this paper, but it's one of the things, of course, it's really important for women with Parkinson's, because they often do have children or families and caregiving responsibilities. And even though these are modern times, they still feel they have to fill in all these roles of being a mother, a daughter, a wife, and doing their jobs, and we still take on more than 50% of the caregiving responsibilities in the house compared to our husbands or men. So I think that that's still like that, so that should maybe change as well. Women with Parkinson's, they need more support with this.
Dan Keller 12:22 I really appreciate it. I think this is a new aspect in our podcast series, and quite important to find out more about the specific needs of women with PD. Search our website at parkinson.org for women and PD, you'll find an article titled The Unmet Needs of Women with Parkinson's. It summarizes the paper that Dr. Oosterbaan co-authored and covers topics such as sex, gender risk factor studies, sex hormone studies, pregnancy care, and mental health and relationship issues. It also lists 12 unmet needs of women with Parkinson's. There are links to several other resources on the topic on that same search page.
You may also be interested in two of our past podcasts—one is called Encountering Gender Differences: Women and PD Initiative, and the other is Young Onset Parkinson's Disease: Lifestyle, Family, and Counseling. If you search our library at parkinson.org/library using the term women, you can find an extensive document called Women and Parkinson's Research and Care Agenda.
Quoting from the preface to this landmark report: It represents an expanded understanding of the role sex and gender play in care, treatment options, and quality of life for women with PD. These comprehensive patient-centered recommendations provide an unparalleled opportunity to change how Parkinson's is studied and treated in women.
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At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
