“My medication works until my period starts”: Li’s story 

When you think about what someone with Parkinson’s looks like, most people jump to the conclusion of an older white man. But Parkinson’s doesn’t care about your age or gender, and in fact, nearly half of Parkinson’s diagnosis in Canada are women.  

I was diagnosed with Parkinson’s when I was only 21 years old. I’ve had to face new challenges alongside my already changing body – how hormonal changes make my Parkinson’s symptoms unpredictable, especially during my menstrual cycle. 

Symptoms that shift with my cycle 

Over time, I started to notice clear patterns in my body. In the days leading up to my period, my energy drops drastically. About two days before it starts, I feel more tired than usual and often just want to sleep – even during exercise.

When my period begins, these changes become more physical. Typically, I don’t experience tremors, but during my menstrual cycle, they appear powerfully alongside rigidity and a sense of slowness. I’ve also noticed that my Parkinson’s medications don’t work as effectively during my period, if it kicks in at all.

When care doesn’t match reality 

I’ve brought concerns to my neurologist looking for guidance on how to manage my symptoms, specifically during my menstrual cycle. To my surprise, the neurologist’s response was, “To be honest, you’re the only person I see who gets their period, and I don’t have any experience with that.” 

“To be honest, you’re the only person I see who gets their period, and I don’t have any experience with that.”

I understand that many neurologists typically see older adults, including women who are post-menopause, but that doesn’t make the lack of support any easier to manage. Even when my concerns are heard, there often isn’t any clear action or advice offered.  

Parkinson’s affects more than motor symptoms 

My cycle affects more than just my tremors; hormonal shifts also affect my mood. During my period, I can feel moodier than usual – sometimes overwhelmed without understanding why. There have been moments when I’ve been journaling or reflecting and suddenly found myself in tears, caught off guard by this intense need to cry. 

When my symptoms start to fluctuate, I lean more into what I can control, such as consistent sleep and exercise. I prioritize getting more than seven hours of sleep alongside daily exercise. 

Beyond the fluctuations, I continue to focus on what keeps me grounded. I find strength in cycling, including participating in the Spinning Wheels Tour, and I’ve returned to school to pursue my dream of becoming a physiotherapist to help others facing Parkinson’s. I also know that exercise and community are essential – and through Parkinson Canada’s support groups and the Spinning Wheels Tour, I’m able to connect with others who understand and remind me I’m not alone. Cycling across the country through the Spinning Wheels Tour helps me connect with people like me across Canada, and helps me to know that I’m making a difference.  

What needs to change for women & what’s next 

I hope that future care will better reflect women’s experiences.

Including the role that hormones play.  Hormone consultations could be a meaningful part of more inclusive care, and I also want to see women-focused research, especially in younger women. If younger women aren’t being studied, it becomes harder to understand how to support them properly. 

Living with Parkinson’s has shaped how I see myself.  It’s allowed me to let go of comparing myself to others, and to just focus on my own identity with confidence. 

Women are resilient by nature, and even when living with Parkinson’s brings unpredictable changes, I truly believe women can do this – no matter how hard it is.