Opinion: Parkinson’s doesn’t care who it impacts, but we should

By Allie Signorelli | @imstillallie

I was forty-three years old when I first noticed a peculiar and persistent muscle twitch in my right ankle. My doctor deemed it to be a “benign nuisance” that would go away, but it never did. My next four years included multiple tests, dozens of appointments, several failed medicine trials, and a mounting list of debilitating symptoms. Tremors, stiffness, mobility issues, speech changes, muscle weakness, and severe anxiety were all altering my daily existence. Looking back now, the answer was glaringly obvious, but Parkinson’s was never suggested as a possible answer – not even by my neurologist. In fact, he told me it would be “exceptionally rare” for a woman my age to have Parkinson’s. He was wrong. It turns out Parkinson’s doesn’t care if you are young or old, or a man or woman. But we should.

After I was diagnosed with early-onset Parkinson’s, I was determined to become as educated as possible about how to slow its progression and take an active role in my health. I wanted to know how it would present for me as a woman with hopefully more than half her life ahead of me. I quickly realized how little is known about women’s unique experience with the condition. In the past few decades, we have revolutionized the way we talk about breast, gynecological, and even heart health for women, but we have significant work to do when it comes to brain health. It is imperative we understand how Parkinson’s shows up biologically in women, how stress and hormones interact, and what it means to live with Parkinson’s while parenting and working. If we aren’t studying women, we can’t help women.

We know that Parkinson’s doesn’t unfold the same way for everyone, and for women, the differences can be profound. Hormonal shifts month to month and in key life stages, including menstruation, pregnancy and menopause, can affect how the disease presents and how symptoms are experienced. However, the extent of our differentiated experience is under-researched and therefore misunderstood. The result can be a one-size fits all treatment approach, leaving women on their own to manage fluctuations in medication effectiveness. Women with Parkinson’s are not anomalies and a gender-informed understanding of the disease is vital to supporting us throughout our lifespan. 

Non-motor symptoms are also different for women. We often seek treatment and receive diagnosis later than our male counterparts. We can face barriers to advanced care, despite evidence that therapies such as Deep Brain Stimulation can offer meaningful improvements in quality of life. The consequences of these gaps extend far beyond the health care system. Many women living with Parkinson’s continue to carry significant caregiving roles, professional and family responsibilities, even as symptoms evolve, they often report feeling isolated or under-supported in navigating it all. 

For decades, women have been underrepresented in Parkinson’s research, leaving critical questions surrounding biology, stress, hormones, and long-term outcomes insufficiently explored. If we want better outcomes, more responsive treatments and a health care system that truly reflects lived experience, we must include women’s voices in care and research related to Parkinson’s and other neurological conditions. 

Significant progress has been made in reducing incidences and death rates of women from breast cancer and heart disease which was achieved by a combination of advocacy, education, and research. I believe we will have similar success against neurodegenerative conditions if we use our voices and share our stories to effect change. That is why I am proud to partner with Parkinson Canada to raise awareness about women living with Parkinson’s. This condition wasn’t on my radar. I never thought I’d be facing this in the prime of my life. I will continue to work every day to ensure we can create a world where no one is limited by Parkinson’s. Understanding the full picture of this condition, including how it manifests in women, will help us achieve this urgent goal. 

Parkinson’s may not care if I am a woman, but as a nation, we must build research, care and support systems with and for women with this condition.