Women and PD
With an estimated 10 million people living with PD worldwide and men 1.5 times more likely to develop Parkinson's disease (PD), the math says 4 million of those living with PD are women. The experience of having PD as a woman is different than that of a man. Women tend to be diagnosed younger so may be of child bearing age with PD, they experience menopause which can complicate diagnosis and treatment, and research suggests that there are other differences. Studies indicate that women with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day (“fluctuations”) and receive lower quality healthcare than men. These resources share the current theories about differences between men and women with PD, stories of women with PD, and how to get the care you need.
Published by the Parkinson's Foundation, 2018
Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day (“fluctuations”), and receive lower quality healthcare than men. Differences may have to do with biology—the way men’s and women’s bodies react to the disease or to therapies. Others may be due to lack of access to healthcare or to unintended differences in the way women are treated for PD compared to men.
By Brian P. Dunleavy. Published by Everyday Health, March 4 2022
Research suggests women with Parkinson’s often go without proper diagnosis and treatment. This list of 10 recommendations by movement disorders specialist at UCLA Medical Center and the West Los Angeles Veterans Administration, Indu Subramanian, MD, and Ryan P. Duncan, DPT, an associate professor of physical therapy and neurology at Washington University in St. Louis aim to help women obtain their best care and quality of life with PD.
By Melissa Schenkman. Published by PCORI, November 22, 2019
A brief history of the PCORI Engagement Award, supporting a project to improve the lives of women with PD through research and care. The project created a three-pronged agenda specifically for women with PD. The project, Women and PD Teams to Advance Learning and Knowledge (TALK), brought voices of women with Parkinson’s into discussions around better outcomes related to decision making with providers and researchers to maximize women’s quality of life.
By Mannon Day. Published by Parkinson's Life, January 23, 2020
It took a decade for Manon Day to be diagnosed with Parkinson’s – with clinicians treating her as though she was a drug addict, causing her to feel “mistreated” and “powerless”. In this short article she explains the role being a young black woman played in her delayed diagnosis – and why “we need more awareness to break the myths and stereotypes” around who the condition affects.
By Jill Seladi-Shulman, PhD. Published by Healthline, August 30, 2021
This article addresses differences between men and women diagnosed with Parkinson's disease, including age of onset, how symptoms present, differences in motor symptoms, treatment challenges in women, the effect of estrogen, cognition, expressing and intrepreting emotion, sleep differences, and coping with PD. Twenty five sources used in writing the article are listed.
By Marina Picillo. Published by Parkinson's Life, December 5, 2019
Men and women with PD experience very different problems. This article explains those differences and how they affect women. She concludes that, the design of studies and treatment of patients is slowly being given more thought to account for these differences as researchers, the media, and patients call for change.
Published by the Davis Phinney Foundation
The Davis Phinney Foundation gathered all their resources about women and PD on a single page, including a webinar on the topic, an article about the benefit of women's PD support groups, a story about pregnancy and PD, and young-onset PD women's council on relationships and intimacy with PD, with links to more videos, blog posts, and workshops.
By Ellie Finch Hulme. Published by Parkinson's Life, November 14, 2019
Since her Parkinson’s diagnosis at age 29, Ellie Finch Hulme has given birth to two children. In this short article she shares her unique perspective – from a “scary” lack of information and support to the condition robbing her of the choice to breast feed – and reflects on the issues surrounding Parkinson’s and motherhood. Ellie blogs in the UK at PD Mama.
By Sharon Krischer. Published by Twitchy Woman, March 15, 2017
In February 2017, psychologist and certified Sex Therapist Beth Leedham, PhD, spoke to Sharon's women’s support group about Sex. A women-only environment allowed for an honest discussion about issues relating to Parkinson’s and our sexual behavior. Sharon shared highlights of Dr. Leedham's talk in this posting of the Twitchy Woman blog.
By Heather Kennedy. Published by Parkinson's Life, November 28, 2019
Heather Kennedy, writer, advocate, and mother lays bare the physical and emotional challenges of managing the onset of menopause with Parkinson’s – from the night sweats and a decreasing interest in sex to the sense of “turning inwards.”
Published by Parkinson's Life, January 14, 2016
Darcy Blake is one of the founders of ‘Parkinson’s Women Support,' based in the Bay Area, California. Founded in 2008, it was one of the first PD support groups for women. In this interview she talks about the lack of female Parkinson’s advocates, how her support group helps women develop coping strategies, and why there’s a desperate need for more research into the impact of the disease on female patients.
Published by the Parkinson's Foundation
Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day (“fluctuations”) and receive lower quality healthcare than men. This difference may have to do with biology—the way men’s and women’s bodies react to the disease or to therapies. Others may be due to lack of access to healthcare or to unintended differences in the way women are treated for PD compared to men.
By the Davis Phinney Foundation, August 19, 2019
In this 1-hour webinar movement disorder specialist, Michelle Fullard, MD, discusses reasons why women experience Parkinson’s at different rates and in different ways than men, including symptom presentation, sleep problems, cognitive impact, responses to surgery, medication side effects, emotional health, and the care partner experience. She delves into the literature about the unique challenges that women with Parkinson’s face.
By Parkinson's Life, November 21, 2019
In this half-hour episode of the Parkinson’s Life podcast brings together three Parkinson’s campaigners to discuss the different challenges facing women with the condition. From waiting for years to be diagnosed to the prevailing image of people with Parkinson’s as “old, grey, dusty men”, their heartfelt conversation sheds light on how a gender gap in knowledge and research affects women’s everyday lives.
By the Parkinson's Foundation, January 22, 2021
This one-hour and 20-minute webinar movement disorders specialist Jennifer Durphy, MD, provides a brief history of the involvement of women in clinical trials and how recent it was recognized that treatment of men and women should be different before getting into the similarities and differences between men and women with Parkinson's disease.
By R. García-Ramos, et.al, Neurología (English Edition), Volume 36, Issue 2, March 2021, Pages 149-157
The main challenge of Parkinson’s disease in women of childbearing age is managing symptoms and drugs during pregnancy and breastfeeding. This study aims to define the clinical characteristics of women of childbearing age with Parkinson’s disease and the factors affecting their lives, and to establish a series of guidelines for managing pregnancy in these patients. This consensus document was developed through an exhaustive literature search and a discussion of the available evidence by a group of movement disorder experts from the Spanish Society of Neurology. The group concluded Parkinson’s disease affects all aspects of sexual and reproductive health in women of childbearing age. Pregnancy should be well planned to minimise teratogenic risk. A multidisciplinary approach should be adopted in the management of these patients in order to take all relevant considerations into account.
By R. García-Ramos, et.al, Neurología (English Edition), Volume 36, Issue 2, March 2021, Pages 159-167
This study aims to define the clinical characteristics and the factors affecting the lives of women of childbearing age, including dystonia, tremor, and restless legs syndrome, and to establish guidelines for management of pregnancy and breastfeeding in these patients. This consensus document was developed through an exhaustive literature search and a discussion of the content by a group of movement disorder experts from the Spanish Society of Neurology. The group concluded clinicians must evaluate the risks and benefits of treatment in all women with hyperkinetic movement disorders, whether pre-existing or with onset during pregnancy, and aim to reduce effective doses as much as possible or to administer drugs only when necessary.
By Sara Olivola1*, et.al, Frontiers in Neurology: Movement Disorders, February 19, 2020
Pregnancy in Parkinson's disease is a rare occurrence, and clinical experience with its management is limited. In clinical practice, doubts concern mainly the impact of PD on gestation, labor, and delivery as well as the safety of dopaminergic drugs. For this paper researchers reviewed 20 studies of PD in pregnancy. The most important data concerns the safety of L-DOPA therapy during pregnancy. There seems to be some risk of worsening of the condition or upcoming of new PD symptoms during or shortly after pregnancy. More data concerning the safety of antiparkinsonian drugs in PD treatment, as well as the effect of pregnancy on parkinsonian symptoms are needed. Currently, L-DOPA therapy should be considered preferable to other drugs during pregnancy.
By Silvia Cerri, Liudmila Mus, and Fabio Blandini. Journal of Parkinson's Disease, 2019; 9(3): 501–515.
Increasing evidence points to biological sex as an important factor in the development and phenotypical expression of Parkinson’s disease (PD). Risk of developing PD is twice as high in men than women, but women have a higher mortality rate and faster progression of the disease. Moreover, motor and nonmotor symptoms, response to treatments and disease risk factors differ between women and men. Altogether, sex-related differences in PD support the idea that disease development might involve distinct pathogenic mechanisms (or the same mechanism but in a different way) in male and female patients. This review summarizes the most recent knowledge concerning differences between women and men in PD clinical features, risk factors, response to treatments and mechanisms underlying the disease pathophysiology. Unraveling how the pathology differently affect the two sexes might allow the development of tailored interventions and the design of innovative programs that meet the distinct needs of men and women, improving patient care.
Researchers led by UCLA Health call for more work to address overlooked issues affecting women with Parkinson’s Disease
By UCLA Health, January 21, 2022
Researchers in a multi-institution study led by UCLA Health have identified several overlooked issues affecting women with Parkinson’s Disease (PD) and call for more research, customized treatments, education and support to empower women living with this disease and to address their unmet medical needs. The study was done by an all women team, including three movement disorders specialists and other researchers, most of whom are living with PD. This summary of the study bullet points the researcher's 8-point "Call to Action," provides background, and the study methods. The study, titled Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies, was published in Movement Disorders, January 20, 2022. Included in this summary is a link to the abstract and the Wiley Online Library for access to the full text. Login through a subscribing institution or purchase instant access.
Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!
By Sheryl Jedlinski. Published by Konoso LLC, January 4, 2018
Journalist Sheryl Jedlinski tells the story of her 20-year journey with Parkinson’s disease. She shares knowledge, coping strategies, and experiences to address adjustments that must be made to enjoy a full, productive life with PD. Told through entertaining stories, this clever, creative read teaches the practical aspects of living with Parkinson’s or a life changing event of any kind.
By Maria DeLeon, MD. Published by The Word Verve Inc., June 29, 2015
A personal and professional accounting of a young Parkinson’s doctor’s experience with the disease in all realms of her life . . . from doctor, caregiver, and ultimately as a young Parkinson’s patient herself. Dr. De León covers important basics of PD and research-based data and shares the personal concerns and gender-specific battles that young women who live with the disease must face. She encourages readers to be empowered through education, self-awareness, and faith.
By Carol Clupny. Published by Ultreia Books, March 15, 2019
Carol Clupny's personal narrative of her travels since being diagnosed with Parkinson's disease is both entertaining and enlightening. Part travel journal, part education, the two elements combine for a wonderful message to us all to keep seeking new horizons and redefined adventures.
Last updated August 2020 by Stanford Parkinson's Community Outreach