Women living with Parkinson’s are overlooked and under-researched

Nearly half of Parkinson’s diagnoses are women, yet their care, support and research is lagging behind men with the same condition.

Nearly half of the 120,000 Parkinson’s diagnoses in Canada are women. Yet, women with Parkinson’s are often overlooked, under researched, and are less likely to be diagnosed. Women living with Parkinson’s often face unique challenges alongside their symptoms such as parenting, caregiving roles, pregnancy and balancing a work/social life.

“Parkinson’s affects everyone differently, yet women’s symptoms and needs have too often been overlooked. The gap in research and understanding has real consequences for diagnosis, treatment, and quality of life,” says Karen Lee PhD, President and CEO, Parkinson Canada. “We’re committed to ensuring no one is limited by Parkinson’s through greater awareness, crucial research, and a strong commitment to equity.”

The limited research on women with Parkinson’s shows that most women will experience a tremor as their first symptom. But women also report more severe non-motor symptoms than men, including anxiety, depression and fatigue. Coupled with hormonal stages that women experience, including menopause, menstruation, and pregnancy, women with Parkinson’s are facing a complex condition, for which no roadmap exists. Younger women with Parkinson’s have limited to no guidance on how their condition and medications interact with their hormonal cycles.

“Parkinson’s impacts my mental health just as much as my physical health. During my period, I can sometimes feel suddenly overwhelmed,” says Li Jiang, 35-year-old student and living with early onset Parkinson’s. “There have been moments when I’ve been journaling and suddenly find myself crying, almost caught off guard by this intense need to let it all out.”

Facts on women & Parkinson’s

• Women may experience more dyskinesias (involuntary movements) as a side effect of levodopa
• Women are less likely to receive advanced treatments like Deep Brain Stimulation (DBS) despite having greater reported improvements in quality of life compared to men following DBS.
• Women are less often diagnosed and encounter greater hurdles in getting an accurate diagnosis.
• Women report different symptoms than men and are more likely to downplay their symptoms.

Parkinson Canada’s commitment to women with Parkinson’s

Parkinson Canada is committed to advancing understanding and addressing the unique experiences of women living with Parkinson’s.

• Through investments in research focused on women and Parkinson’s, we aim to close knowledge gaps around sex and gender-related differences in the condition.
• Parkinson Canada also offers peer-led support groups tailored to women, including a virtual support group dedicated to women living with early-onset Parkinson’s.
• Parkinson Canada is raising awareness of women’s experiences with Parkinson’s, through sharing of information and women’s personal stories here: parkinson.ca/women   The organization has also created a free downloadable resource on the topic, to help empower women as they navigate their own Parkinson’s care.

Women in the Parkinson’s community have been overlooked and left out of research for too long – forcing many to navigate the health care system that was never designed with them in mind. Visit parkinson.ca/women to learn more. Join the conversation on social media using #WomanEnough to help ensure women’s voices and concerns are heard and understood.

About Parkinson Canada:

At Parkinson Canada, people with Parkinson’s are at the centre of everything we do. We empower the Parkinson’s community through tailored programs, innovative research and raising the voice of individuals living in Canada impacted by Parkinson’s. A national registered charity, Parkinson Canada fulfills its mission through the generosity of donors.

Please visit parkinson.ca, call 1-800-565-3000 or email info@parkinson.ca in English or French for more information, to get involved or to support individuals affected by Parkinson’s by making a donation.

Join the conversation, find Parkinson Canada on Facebook, X and Instagram.