A Mother’s Reflections: Pregnancy and Young Onset Parkinson’s

Earlier this month, Mother’s Day was celebrated across the country. On that day, countless women who form part of the Parkinson community as care partners, family or living with Parkinson’s themselves were celebrated for their strength, courage and perseverance.

In this article, we acknowledge one woman’s story whose own journey with Parkinson’s and motherhood highlights those features we celebrate of moms and of Canadians living with Parkinson’s year-round.

Caitlin Nagy was just 31 years old when she first noticed a tremor in her hand. She spent seven years in denial, seeking alternative diagnoses and delaying treatment. Along the way, she gave birth to a baby girl and ultimately came to terms with her Parkinson’s.

Due to her own preparedness to accept her diagnosis and not wanting to start treatment while pregnant, Caitlin did not take Parkinson’s medication while trying to conceive and throughout her pregnancy. That led to a difficult experience.

Through it all, Caitlin persevered and now her daughter Bridget is a regular reminder that, just like Parkinson’s, while the journey is a challenge, the results are worth the effort. Now thriving as a mom and managing a creative agency, she wants others with young onset Parkinson’s to know that they are not alone.

My first trimester was tricky. In the first trimester, the tremors were in hyper-overdrive. I was shaking all over the place to the point where my friends’ kids would ask me, ‘Why are you shaking? You’re the shaky lady.’ This was so heartbreaking and disheartening as a mom, to wonder if my daughter would have to deal with these kinds of comments.

In the second trimester, my symptoms were even worse — I lost my energy and had a lot of fatigue and pain in my body. By the third trimester, I was pretty much bedridden.

– Caitlin Nagy

I was terrified. Things just kept getting worse and worse as the pregnancy progressed, and I couldn’t help but wonder if I was going to be a good mom. How was I going to breastfeed my daughter and change her diaper? Would I be able to pick her up and carry her down the stairs? It was so scary and so depressing. There were also so many people in my life who just didn’t understand what I was going through. They would say things like, ‘Oh, you know, you’re fine.’ There was just no empathy and it made it feel like what I was going through wasn’t valid.

So, I totally withdrew. I wouldn’t go to the grocery store or shopping, or out to see friends because I was so ashamed of what my body was going through. You’re supposed to be pregnant, glowing and feeling amazing and that was not the case for me at all. I could just barely get around. Luckily, I was able to take my daughter all the way to term, so at 39 weeks I delivered a happy and healthy baby girl.

– Caitlin Nagy

As she adjusted to parenting, she came to terms with Parkinson’s as well. She saw her neurologist shortly after giving birth and agreed to begin treatment. She remembers the “high” of beginning to see the results of treatment.

“I could walk around the room without limping, my left arm wouldn’t shake. I did a full-on dance party in my office that day, just jumping around for a solid two to three hours,” Caitlin said. “It was like being reborn again. It felt so amazing.”

That’s why sharing her story is important to Caitlin: so others know pregnancy and Parkinson’s is something you can manage; so the typical vision of an older man as the face of Parkinson’s is not the only reality; and most of all, to send a message that proactively engaging with your diagnosis is the key to helping to manage it. This winter, she shared her No Matter What story of resilience as part of her sharing her diagnosis. After years of hiding from Parkinson’s, she was overwhelmed by the support she received.

“I want to make sure that everyone who is in their twenties or thirties, who might be newly diagnosed and not know how to handle it because they don’t have information — there are resources out there. They should be reaching out to people like me and Parkinson Canada to learn what they should be doing to manage better and that there is life after Parkinson’s.” Indeed, there is life, opportunity and a family future for many. Occasions like Mother’s Day allow us the opportunity to stop and reflect on the everyday stories of strength and courage that surround us in the Parkinson’s journey.

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