Access to care shouldn’t be an afterthought

Across Canada, more than 120,000 people are living with Parkinson’s—a number expected to reach 150,000 by 2034—yet women’s symptoms are still too often overlooked or misunderstood. Kathy’s story shows how quickly symptoms can take over a life, and how slowly the system can respond when women need answers. Her experience reflects why women deserve care that recognizes their needs and responds with urgency, not doubt.

Kathy’s story

I was 63 when I was diagnosed. Before my diagnosis, I knew very little about Parkinson’s. If I pictured it at all, I saw an older white male with a visible tremor—not a woman, not an author or creative writer, not a mother.

There is still a strong stereotype of what Parkinson’s looks like, and it doesn’t include anyone like me. I’ve been told I look “too well” to be living with Parkinson’s, or “too young.” It’s upsetting, especially when it’s a bad day, and you’re feeling very weak and as if you were ninety. There is a real need for better information.

When your symptoms are urgent—but your care isn’t 

My symptoms arrived all at once—tremors, rigidity, slowness, and changes in my gait. Some people suggested that this too meant I didn’t have Parkinson’s. My body felt out of control, unfamiliar, and I got steadily worse. I wasn’t “making a fuss” about a small tremor—my whole way of moving through the world was changing, and I just wanted an answer.

Despite how alarming it was, it took 18 months to receive an official diagnosis. I moved through countless appointments, referrals, and long waits. By the time I was diagnosed, I had already pieced together what was likely happening.

“I wasn’t “making a fuss” about a small tremor—my whole way of moving through the world was changing, and I just wanted an answer.”

Access to care shouldn’t be this hard

Living on an island off Vancouver means seeing my neurologist is an all-day event—long ferry rides, countless hours in the car and a lot of waiting in between. While I consider myself fortunate to have access to a neurologist, I know many others in rural parts of Canada face far greater barriers to care.

When women’s needs go unrecognized

During my doctor’s visits, no one ever discussed whether my experience as a woman might shape how Parkinson’s presents in my body. 

I’ve never been offered adjustments based on sex or hormonal life stage, even though I’m post-menopausal and hormonal shifts can affect many aspects of my health. Women’s bodies have historically not been studied with the same depth or priority as men, so it’s not surprising that women’s unique needs have not been adequately researched and aren’t integrated into Parkinson’s care for women.

The loss no one prepared me for 

Before my diagnosis, I was a creative writing professor and published author, and storytelling shaped both my career and my identity. Writing demands focus, imagination, and mental stamina to build complex fictional worlds. As Parkinson’s took over, I began to lose the cognitive endurance it required, and I questioned whether I could keep creating. I remember thinking, “How can I write a novel if I can’t even do up my own buttons?” It was a huge blow, but previous training as a counsellor helped me.

“How can I write a novel if I can’t even do up my own buttons?”

No one should feel their stability or sense of self shrinking—not only because of Parkinson’s, but because of the stress, frustration, and waiting that comes with trying to access the care to stay well.

This story is shared thanks to the courage and dedication of Kathy Page. Her memoir of her first five years of Parkinson’s, In This Faulty Machine, published by Penguin Canada is available now. 

Closing the gaps for women with Parkinson’s 

Kathy’s experience shows how unequal access to Parkinson’s care still is in Canada—from long waits to care that overlooks women’s needs. Limitless Parkinson’s care means changing that, ensuring people can see the right specialists, find local support, and get timely help no matter where they live. 

Help close the care gaps for women with Parkinson’s. Visit www.parkinson.ca/PAM