Women may face challenges in receiving a timely and accurate Parkinson’s diagnosis because their symptoms often present differently than in men. Yet women remain underrepresented in research, and often encounter more barriers to care, treatment and support. 

I know this firsthand as I was diagnosed with Parkinson’s in 2018 at 58 and have had to navigate the health care system alone while learning to live with my condition. 

Elaine loves to spend time outside whether it’s gardening, tending to her plants, or just enjoying the fresh air. 

When a diagnosis doesn’t come with support 

I remember the day I was diagnosed vividly. The doctor entered the room with no emotion and said, “You have Parkinson’s.”  There was no conversation, no chance to ask questions, or even a sense of what to expect. It felt blunt and isolating, and I left without any support or guidance. 

The doctor entered the room with no emotion and said, “You have Parkinson’s.”

I expected that once I found more specialized care, I would get support that was thoughtful and ongoing, but instead my experience came with consistent delays and uncertainty.  At one appointment, a doctor told me that I would start to “deteriorate” and should “get used to it.” 

Over time, I made the decision to take my health into my own hands. I’ve really done everything on my own including managing my medications and making choices about my care.  

Dating when people only see the stereotype 

Parkinson’s hasn’t erased my desire for wanting a partner. But my diagnosis has changed the dating experience for me in a way that feels unfair and personal. 

After my diagnosis and the breakup of a significant relationship, I hoped to return to the dating world, but discovered it had become much more complex than before/than I expected. I still see myself as able-bodied and active, and I don’t believe Parkinson’s defines who I am. I love creativity and movement – biking whenever and wherever I can, sewing projects at home and taking my dog out for walks. I don’t see myself through the stereotypes people often attach to Parkinson’s. But if I decide to disclose my condition too soon, some people immediately picture an older person in a wheelchair instead of the person in front of them. Dating becomes more complicated when the person you’re seeing starts to respond with assumptions instead of responding to you. I also think about the responsibility women are often expected to carry, and I’m honest about not wanting to feel like a burden in someone else’s life. 

At the same time, through Parkinson Canada’s Spinning Wheels Tour, I found a sense of community, forever friends, and a new housemate. 

Elaine participated in The Spinning Wheels Tour for the first time last year, bringing her love of cycling and staying active to the ride. 

What needs to change for women & what’s next 

I believe that women’s experiences of Parkinson’s are still overlooked, and I never hesitate when I’m asked if women’s voices are heard enough. 

I want women to hear, early and clearly, what I had to learn on my own: that Parkinson’s can present differently in women, and that care needs to reflect that reality instead of ignoring it.  

I also believe in writing your own story – don’t assume Parkinson’s will follow one path. Every day is a chance to wake up, live your best day, and not give up. 

This story is shared thanks to the strength and bravery of Elaine Jongsma.  

We’re sharing stories like Elaine’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.

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