When people hear the word ‘Parkinson’s”, they think of tremors, stiffness, slowness – all visible motor symptoms. But Parkinson’s is more than visible symptoms – and that narrow understanding means many women’s experiences are misunderstood or dismissed. 

For me, the challenges have included hormonal shifts, anxiety, depression, stigma and the emotional weight of just “trying to keep it together.” 

My son Kyle noticed my tremor first and like many women, I tried to dismiss it or justify it being stress – and at first, my doctor did as well. It took a second visit before being referred to a neurologist. And even then, I still had to push to be heard. 

When symptoms are dismissed 

My earliest experience with care was shaped by something many women face, which is not being listened to. I’ve learned that not every health professional understands how Parkinson’s presents differently in women. My first neurologist didn’t take the time to hear what I was feeling, and I was prescribed medication without a real conversation.  

“My earliest experience with care was shaped by something many women face, which is not being listened to.”

Now, I feel supported by my care team and am hopeful for the next steps in my care, which includes Deep Brain Stimulation surgery, but that early dismissal left a mark. 

Mylene loves caring for her plants, but when she’s not tending to her garden, you can find her window shopping at the mall to get her steps in. 

Hormones, fatigue, and the untold symptoms 

I was diagnosed post-menopause, but hormonal changes still affect my daily life in ways that aren’t typically discussed. For me, fatigue is one of my stronger symptoms. In the mornings, I often feel okay and ready to tackle the day, but by early evening, everything starts to feel much slower. By 6 or 7 p.m., I’m absolutely exhausted, even getting off the couch feels like a massive chore.  

Hormones can also trigger other symptoms that aren’t usually talked about. For me, when I experience hot flashes, I know it’s hormonal – but then the anxiety follows, and then dystonia related to Parkinson’s. I hadn’t known how these two could be related.     

Dystonia (involuntary muscle contractions) is the symptom that affects me the most. When it happens, I’m completely out of commission. Over time, I’ve learned to calm myself and take a step back. 

Parkinson’s changes your identity 

Living with Parkinson’s has reshaped the way I see myself. I can’t drive, go out alone without the constant worrying of freezing or dystonia – even cooking has become stressful. I used to do everything on my own, and now I’m afraid of cutting myself in the kitchen while prepping meals. Self-care has even become complicated, since something as simple as taking a shower requires planning around my energy. Sometimes, I want to shower in the morning and then push it to the evening, but then I don’t have the strength or energy to do so.  

The stigma women still face 

Friends have told me that there was ‘no way’ I have Parkinson’s. Some friends suggested I was imagining it and have even told me to “stop talking about it.” 

I was also let go from my job after I was diagnosed – it was never stated directly, but it was implied. And even now, I still face assumptions that women don’t get Parkinson’s and that my symptoms are “in my head.” I’ve been asked not to talk about it because it’s too much for some people to handle.  

Mylene is a strong advocate for mental health in the Parkinson’s community, speaking openly about her own experiences – and she’s almost always doing it with a big smile on her face. 

What needs to change for women & what’s next 

I’ve found strength through stretching, boxing, and walking at home – but often turn to Parkinson Canada for support when I need it. Through Parkinson Canada’s CareFinder, I’ve found Tai Chi classes around the corner from my home. But I believe that there still aren’t enough spaces specifically designed for women facing Parkinson’s.  

Women need more information, tailored support and opportunities to speak openly about menopause, mental health, parenting, and the realities no one talks about. I also want to see research and clinical trials better include women. Parkinson’s doesn’t affect us the same way, and research needs to take women into consideration – from anatomy to mental health. 

And it’s important for people to understand that Parkinson’s is not a male-dominated condition. Women – and young women – are affected too. In fact, nearly half of the Parkinson’s diagnosis in Canada are women. I’m hopeful that by sharing my experiences, I can be part of a shift in understanding across the country, and help women feel less alone.  

This story is shared thanks to the courage and spirit of Mylene Pereira. 

We’re sharing stories like Mylene’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.