Our story: dating, love and family with Parkinson’s 

My name is Alex, and this is my story about my life with my wife, our two beautiful kids, and Parkinson’s.  

When the script changed 

I began my career in the world of theatre, being captivated by the energy of the stage, the storytelling, and the connection with the audience. Little did I know that life had a rewrite in store for me. Subtle tremors and mobility issues had been building for years, and eventually I was diagnosed –⁠ first with Dopa-responsive dystonia at 16, and later, with Parkinson’s at 29. It was a turning point, not just for me, but for my whole family. 

Strangely, the diagnosis brought a sense of clarity. It explained why simple things like walking felt so exhausting and that it wasn’t just in my head. My parents were my greatest advocates — navigating the maze of specialists, appointments, and therapies with unwavering determination and hope. 

With time, I found a new path. I returned to school, earned degrees in mathematics and statistics, and built a new career in banking. Acting may have been my first act, but life had other roles for me to play, and I’ve learned to embrace each one as it comes. 

Finding ‘the one’ 

I met my wife during the pandemic. Internet dating was a new and strange frontier for me –⁠ especially when being upfront about Parkinson’s. Some people ghosted. Some awkwardly said “sorry” and left. But then I met her. 

She didn’t say “I’m sorry.” She said, “Tell me more.” 

That’s when I knew, and we had our first date on Halloween. That was supposed to be just coffee… but that turned into four movies and eight hours of conversation. Five months later I proposed, and less than a year after that we got married. 

 She’s a nurse and works in the Intensive Care Unit and with burns, so strength and compassion are built into her DNA. She’s also the reason I push myself, try new things, and keep fighting even on hard days. 

“Since the surgery, life has changed. It’s not a miracle cure, but it’s a major win.”

Life with Parkinson’s –⁠ even the hardest bits 

Some things are just harder. I get really tired . Before I had deep brain stimulation (DBS) surgery, tremors were starting to take over. I worried whether I’d be able to walk down the aisle or if my groomsmen would have to carry me. But thankfully, it was a good day, and I walked. 

Since the surgery, life has changed. It’s not a miracle cure, but it’s a major win. I no longer need a walker. Crawling used to be easier than walking, but not anymore. 

Sure, there are challenges. I was laid off once because I couldn’t meet certain expectations –⁠ Parkinson’s symptoms and anxiety made it tough. But my parents backed me through school, and I’ve been lucky to find a company that values diversity and understands my condition. 

I’ve also learned that stigma is real, but not always where you expect it. Using a walker used to make me self-conscious, but it opened conversations. I even started a TikTok account to share my story. 

The humour and the hard truths 

When I was officially diagnosed, my friends made me gift baskets. Inside were maracas, Shake ’n Bake, and the board game, Operation. It was their way of saying, “We’re with you,” with laughter. 

We try to find joy in the absurd. Our son thought Parkinson’s was a game at first –⁠ he made up names for the tremors. And in many ways, it helped us all frame it differently. 

But there are heavy parts too –⁠ the apathy, the unpredictability, the curveballs. Some days just feel like a fog. That’s where my wife shines. She made a “To-Do Clipboard” –⁠ daily, weekly, and monthly goals to help me stay on track when my motivation is low. 

Parenthood, playtime and purpose 

These days, my hobbies have changed. Not because of Parkinson’s, but because of parenthood. I’ve become quite an architect with LEGO, playing with dolls, and changing diapers. I started playing hockey with my son. Life is busy, but it’s beautiful. 

I stay involved where I can, participating in research when I can –⁠ although I’ve been turned down for being “too young.” 

Advice from us to you 

Let people in; it’s not a solo mission. Surround yourself with those who say, “Tell me more,” not “I’m sorry.” Be open with your workplace and find spaces that make room for all of you. 

And advice from my wife:⁠ be proactive. It’s a whole-household condition, not just an individual one. Everyone deals with things differently, so give each other grace. She swears by reading Michael J. Fox’s books, especially the parts written by his wife. That connection spoke to her. We’re not perfect, but we’re present. And every day we choose connection and love –⁠ messy, honest, beautifully imperfect love. 

Human connection is important. Parkinson Canada offers support groups and resources to help you find your next connection.