When I was diagnosed with Parkinson’s at 38, it wasn’t only the diagnosis that changed my life – but the assumptions that are associated with it.  For me, living with Parkinson’s has been about being seen, heard, and learning how to live fully in a body that shifts day-to-day.  

Before my diagnosis, I believed that Parkinson’s mainly affected older men and associated it with tremors and visible symptoms. So, when my symptoms began in 2021, neither me or my doctor immediately considered Parkinson’s. Early signs were dismissed as stress and anxiety from the pandemic, but I had an inkling that that wasn’t the case. In January 2022, I finally received my Parkinson’s diagnosis alongside the fear of what the future might hold. 

The emotional toll no one prepares you for 

Parkinson’s is often described by its motor symptoms, but for me, the emotional impact can be just as heavy.  I experience anxiety and mood swings, which can be impacted by my hormonal changes. 

Each month brings patterns I’ve learned to recognize. The week before my period can feel emotionally intense filled with mood swings and sensitivity. I call it my “hurricane season,” and my husband has learned to prepare me. The week before my period can feel like an emotional hurricane. I’ve never heard people talk about that part of Parkinson’s. 

Sharon takes time to stretch and “shake off” her Parkinson’s, helping herself feel grounded.

Hormones and the gaps in care 

I’ve noticed that when my estrogen levels dip, my mood and energy typically follow suit. The connection to me feels clear, but my hormonal health is not something I’ve received much guidance or information on from my health care team. 

Instead, I’ve found understanding through women’s support groups through Parkinson Canada, where people share what is often missing from clinical discussions. 

Stigma and not fitting into expectations 

People have often assumed I’m attending Parkinson’s spaces to support someone else, not that I’m the one living with Parkinson’s. Others are surprised because I don’t match the image they have in their head. 

As a Brown woman, I’ve also encountered comments on how “rare” it seems that I’m living with Parkinson’s, revealing how narrow public understanding is. Maybe it’s rare, or maybe the health care system just doesn’t see us, especially younger women, as potentially having Parkinson’s.  

“Parkinson’s is not writing my story.”

When I share that I’m living with Parkinson’s, some people respond with curiosity while others respond with pity. I try my best to remind others that my life is still full of richness with both good and bad days, and that Parkinson’s is not writing my story. 

Sharon practices writing as a way to help manage the involuntary movements she experiences. 

What needs to change for women & what’s next 

For me, better care for women living with Parkinson’s means creating safe spaces for connecting with others. Support groups do help, but I imagine even more opportunities to meet in person and build deeper relationships through gatherings or retreats where women can learn and feel supported together. 

Women’s voices also need to be more central in research and clinical care, which starts with giving women the time and space to fully express themselves. Women deserve the time, space and support to share their experiences with Parkinson’s, in their own words and at their own pace. 

For anyone living with Parkinson’s, I’d share that some days will be easier than others – don’t let the fear of living get in the way of actually living. 

This story is shared thanks to the passion and resilience of Sharon Chakkalackal. 

We’re sharing stories like Sharon’s to shine a light on women’s experiences with Parkinson’s, as they have been overlooked for too long. Your story deserves to be heard. Share your own story using the hashtag #WomanEnough.  

Parkinson Canada is pushing for change through awareness, research and resources designed with women in mind. Together, we’re working towards a life without limits. Learn more at parkinson.ca/women.

Need someone to talk to? Our support team is here for you. Reach us via phone or email, Monday to Friday 9:00 a.m. – 4:00 p.m. ET. phone or email, Monday to Friday 9:00 a.m. – 4:00 p.m. ET.