Where Can Women with Parkinson’s Turn?

Veronica Todaro, M.P.H.“I asked one of the best doctors I have seen — and I have worked with a few — about the effect, if any, of menopause on Parkinson’s disease. Her response was ‘estrogen doesn’t cause Parkinson’s disease,’ which wasn’t my question at all. What I remember about her answer was wondering: where can I turn for a better one?”

It is striking just how similar Lisa Cone’s comments are to those of 25 other women who joined the Parkinson’s Disease Foundation (PDF) last month in launching our Women and PD Initiative, the first national coordinated effort to improve the health and well-being of women with Parkinson’s disease, with a three-day conference in New Jersey.

These women, all living with Parkinson’s disease, know all too well how a better understanding of issues related to women and PD is standing between them and a better life with a chronic and progressive disease. Like Ms. Cone, they joined us in examining, challenging and finding ways to change the status quo when it comes to the lack of women-centered research, care and support.

There is clear evidence in Parkinson’s, as with many other chronic diseases, that women experience differences in disease presentation, symptom severity and medication response. Yet there has been little effort to define the differences and ensure that the medical community and women themselves have the information to manage them.

  • For example, while there is initial evidence that men and women have different responses to medications, few studies explicitly focus on women and PD. Not only that, women are underrepresented in clinical research studies.
  • There is growing evidence that women experience a longer duration of time than men, (one study estimates 61 percent longer) between the onset of their disease and the first time they see a neurologist specializing in movement disorders. (This gap is particularly troubling given that 92 percent of people with Parkinson’s who see a specialist rated their knowledge on the disease as informed or very informed compared to only 66 percent of those who see a general neurologist (a non-specialist) who could say the same).
  • Women with PD may be more prone to depression but show less cognitive impairment. And they tend to have more difficulty than men with daily activities, like walking and getting dressed.
  • This is to say nothing of the societal norms that are challenged has women living with Parkinson’s, struggle to fulfill their traditional roles partners, mothers and daughters of aging parents. For some women, the disease leads to struggles with self-image and it becomes difficult to dress and groom themselves. Many suffer from the impact of symptoms as their gait changes and facial expressions become “masked,” not conveying their emotions of sadness or joy.

The situation became clear when, just over a year ago, when we surveyed women with PD and 72 percent told us that women have unique needs when facing PD, but 91 percent said they have never received any information or resources related to those needs.

Women and PD Advocates

Photo credit: Chris Jorda Photography

The conference launching the PDF Women and PD Initiative exceeded our expectations in providing a forum for collaboration between women who live with Parkinson’s and women professionals in the fields of movement disorders, psychology, physical therapy, sexuality and wellness. These women came together to share knowledge, shine a light on unmet needs and identify actions to address them — to ultimately improve the health and well-being of women living with Parkinson’s.

The energy and momentum demonstrated by this amazing group of dynamic leaders made it clear that together, they can and will put issues of importance to women with PD on the map. More importantly they will chart a course that will inform and galvanize women in communities across the country in shaping the future of research and care for women with Parkinson’s.

Because when we think back to Ms. Cone’s question about menopause and PD, shouldn’t we have an answer for her? And if we do not, shouldn’t we be looking for one or, at the very least, can’t we offer her a place to turn?

After spending an intensive three days with these women who are ready to take on the world while working in their own communities to raise awareness and offer resources, I am much more confident that we will.

What Do You Think?

Have you experienced issues unique to women with Parkinson’s disease that you think need research and attention? Please share your thoughts below in the comments.

Learn More

Do you want to learn more about the Women and PD Initiative? Recently, several of our inspiring new PDF Advocates blogged about their experience. We encourage you to check out our own website and visit their blogs below.

2 thoughts on “Where Can Women with Parkinson’s Turn?

  1. Peggy Willocks

    From 2000 until 2008, I was a clinical trial participant for a dopamine-producing cell implantation in the putamen area of my brain. I was he second person in the world to have this stereotaxic procedure done,. Not that it has anything to do with how participants were selected, but the first human to receive these cells – transplanted from a donor’s eye – was a man. This was phase I, the safety phase, so participants were intentionally selected to be as balanced as possible; There were six participants in this open-label trial, with a mean age of 52.2 years – 3 males and 3 females. There were some participants who experienced emotional adverse effects, but it is unknown if these effects were in any way due to the surgical intervention.. However, I overheard a non – scientific comment made that caught my attention. The comment was off the record, and went something like this, “We will be more careful in phase II to avoid selecting women of menopausal age.” I can see why such thinking would occur, because there is often an emotional see-saw for menopausal women, which could have skewed the trial results. As far as I know, there was never any follow-up on such a comment, but it points out the need for a meta-analysis study design to see if emotional factors, such as anxiety, depression, or other psychotic behaviors do indeed have an effect on trial participants relating to gender. What a find this would be in relation to reliability in many past or future studies!

    Reply
  2. Anne Garbarini

    Here in the South we call those hot flashes, “Tropical Moments” and at times I think I live in the Amazon Jungles with the way I just ooze sweat. I’ve participated in some studies at the U of Florida and will continue to. If there is any way I can help please let me know

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *