We have different bodies, different hearts, different experiences and have different care needs. We know that Parkinson’s disease is very individual from person-to-person, but both sex (biology) and gender (social/cultural constructs) may contribute to these differences.
There is a need to understand the particular impact of this disease on women, in general – we need to better understand and address the realities of women with Parkinson’s disease (PD). Robin Morgan, author of 22 books and host of “Women’s Media Center Live with Robin Morgan” (WMCLive.com and iTunes), wrote an incredible piece for PDF’s Fall 2014 newsletter that really rings true. Also, Parkinsonswomen.com offers moral support, encouragement and camaraderie for women with PD.
My research, especially during my PhD, not only focused on frailty and daily function in PD, but specifically sought to understand the implications of PD for women (you can read more Roland et al. Maturitas, 2010). In Europe and North America the incidence of PD is 1.5–2 times lower and symptom onset is two-years later in women than men. Conversely, in Yamagata Japan PD incidence is reported to be greater in women (91.0/100,000) compared to men (61.3/100,000). The reasons for this diversity have yet to be determined. Symptom expression differs: women experience greater fluctuations in motor symptoms, depression, pain, dyskinesias, and instability leading to falls then men. This may lead to greater need for hospital care and reduced quality of life. Also, the underlying effect of estrogen may also influence medication effectiveness, dyskinesias and disease progression.
In terms of function, the literature suggests women have greater loss of lower-body strength, reaction time, poor poor balance confidence, increased freezing of gait, and lower exercise tolerance. Also, more difficulty in ADL tasks, like getting dressed. However, cognitive issues seem to be less prevalent in women. These functional limitations can greatly affect HOW women manage the disease.
And what about the impact of gender roles on disease expression and what it means to be a women with PD? The growth of same-gender support groups, in which a person may feel more comfortable discussing intimate details than in a mixed female-male group, brings to light about differences in women’s symptoms, side effects, care and participation in research.
Women are 22% less likely than men with PD to see a neurologist – does this increase suffering in women?
What about caregiving? The entire family is affected with PD. In society, women are often the “tent poles” of the family and most likely to become the primary caregiver. How are we helping women whose relatives live with PD? Or women who is diagnosed herself with PD? Women who become ill may be at greater risk of finding themselves without a partner compare to men. Studies show 6x greater risk of divorce among older heterosexual couples when the wife becomes ill (work done by: Amelia Karraker, Ph.D., Kenzie Latham, Ph.D., Michael Glantz, M.D.) Clearly, we need to do more work around the implications of care for women with PD.
Research and advocacy
The presence of women in research has improved since the National Institutes of Health (NIH) policy in 1986 was established to correct any imbalances – but not enough has been done and women are still underrepresented in medical and drug trials. Including women in studies is important so we can understand how a woman’s physiology determines treatment.
Robin Morgan works with PDF’s Parkinson’s Advocates in Research program to understand and end inequalities in research and treatment, and to better meet the needs of women. They’re just getting started, and need and welcome your participation! You can start by taking PDF’s survey here, to help us understand the specific experiences of women with PD. Please contribute, whether you are a women living with Parkinson’s disease, a care partner to a person living with Parkinson’s disease or a health professional working with women who live with Parkinson’s disease. Another idea might be contacting PDF about its Women and PD Initiative, which is launching in spring 2015! much love.
“We need to fix inequalities in research for everyone living with PD who hopes for more effective treatments.” Allison W. Willis, M.D. Faculty member, PDF Parkinson’s Advocates in Research program; Assistant Professor of Neurology, University of Pennsylvania.
“Women typically fulfill many roles within their lives … everything from super mom, holiday organizer, caretaker for both aging parents and grandchildren, while managing a household and a career. Despite living with PD, the expectations for women often remains the same. The complexity of managing our commitments along with living with a chronic progressive disease can be overwhelming. We are launching the first PDF Women and PD Summit so women have the chance to come together with others who are traveling the same path. Our hope is for each woman to leave the Summit with a new cache of life-enhancing skills that she can share with women in her own community.” Karen Smith, Vice Chair, PDF People with Parkinson’s Advisory Council, PDF Research Advocate.