Together, We’ve Got This – the Viegas family’s story of living with young-onset Parkinson’s

The Viegas family’s story of living with young-onset Parkinson’s 

By Michelle Mahoney

For Kristine and Tony Viegas of Bradford, Ontario, life is overflowing with family, friends and purpose. With three children, one granddaughter, soccer games and weekly date nights that they never miss, their story is one of laughter, resilience and gratitude. They also share an unshakable determination to live fully while navigating the reality of Parkinson’s.

When Tony was diagnosed with early-onset Parkinson’s at 49, it came as a shock. “I cried the whole way home,” he recalls. “It was not knowing what was going to happen next, what life was going to look like.” Kristine remembers that moment too, the uncertainty and lack of direction that followed the diagnosis. “There were no answers, no road map, no support,” she says. “Just a new word that had suddenly changed everything.”

A family grounded in strength

When Parkinson’s entered their lives, the family’s rhythm changed, as medication regimens, appointments and naps became part of the routine. Days became a little slower, more deliberate, but still filled with busy schedules, family and fun. “After the diagnosis, I knew I had to learn and learn fast. Not just for him, but for our kids and for our future,” Kristine acknowledges. “We weren’t going to let Parkinson’s steal our joy or break our family. We were going to live fully, differently maybe, but still beautifully.”

Kristine and Tony’s children – Tatyana and her husband Gary, Luana and her fiancé Cole, and 13-year-old Gavin – and 6-year-old granddaughter Tamika are a constant source of strength and joy. “As a family we are much stronger now,” Kristine says. “We live for today and plan for the future. We make sure to spend more time together and check in that we are both well. We appreciate the small things and are open with our kids about Parkinson’s. Our daughters and parents asked to be a part of my support group emails, so they can learn and be supportive as well.”

Tony has continued working in construction, running the machine that pours curbs and sidewalks – a job he has had for over 20 years. The physical nature of this work keeps him moving, and his family, friends and coworkers keep him grounded. Of course, there are challenges. Tony admits, “I move slowly, so sometimes I get people saying stuff to me or looking at me funny. At the grocery store when I’m paying for something and putting stuff in bags, someone might stare or wonder what’s going on with me.”

Still, he hasn’t lost his sense of humour. “I have no problem telling people I have Parkinson’s. In fact, I even wear a shirt that says ‘I’m not drunk. I have Parkinson’s’, because of the looks and comments I get sometimes.”

Finding community through Parkinson Canada

After the diagnosis, Kristine started her search to learn everything she could to support Tony and help her family continue to move forward. That led her to Parkinson Canada, the national organization working to empower people living with Parkinson’s, through advocacy, research and community support. In 2022, she and Tony participated in their first Parkinson Canada SuperWalk, not knowing what to expect. What they found was connection. 

“We didn’t know anyone,” Kristine shares. “But something incredible happened. We met people and families who opened up their hearts, shared their stories and made us feel seen. We left that day feeling lighter. Not because Parkinson’s was gone, but because we knew we weren’t alone. We looked at each other and said, ‘We’ve got this’.” From that day forward, the couple had a different mindset.

Kristine quickly went from participant to organizer, helping to grow the Newmarket SuperWalk and eventually facilitating support groups for others living with Parkinson’s and their care partners. She also organizes community events, including the town’s first ever Dinner and Dance Fundraiser for Parkinson Canada. “SuperWalk lit a fire in me,” she says. “It’s kept me busy, learning, growing and filled with purpose. Supporting others helps me support my own family. It reminds me every day that we’re all stronger together.”

Tony adds, “We’re both able to learn a lot from other people who have Parkinson’s and share what works for us. It’s good to have people going through the same things you are. One thing that happens for me is mood changes. I feel down a lot, and it’s good to talk to other people that it happens to, so you don’t feel like it’s just you.”

Celebrating the little things

Life with Parkinson’s comes with adjustments. Fatigue is real and social plans are shorter than they used to be. Tony and Kristine’s home, once the centre of many gatherings, now has a sign on the door that reads: Please leave by 9. A family joke, rooted in reality. 

Some moments are harder than others. As Kristine explains, “My son plays competitive soccer and they sometimes do parent/kid matches. Last year, my husband joined in and it was a struggle. Other parents didn’t understand why he was having a hard time because ‘he looks fine’. That judgment was hard. This year, he sat it out. That’s the part that stings the most, feeling misunderstood by people who don’t see the invisible weight he’s carrying.”

Despite that, the couple finds the light in everyday moments. “It’s okay to grieve what’s changed,” Kristine notes. “But it’s also okay to laugh, to find beauty in the slower pace, to choose hope. We don’t say, ‘Ugh, this walk is so slow’. We say, ‘Look at this beautiful walk we get to take – together’.” 

Words of wisdom and hope

Sharing some perspective for those newly diagnosed and their loved ones, Kristine says, “If I could offer anything to someone just beginning this journey, it would be this: be patient with your partner, with yourself, with the process. There’s a learning curve, especially when Parkinson’s shows up more in behaviour than in physical symptoms. Some days will be hard, but every day is still yours to live.”

Tony’s advice? “You can’t know what’s going to happen to you because every experience of Parkinson’s is different. But you can just take it day by day, connect with your family and friends. I also stand up for myself a lot because people just don’t understand what Parkinson’s is. Don’t feel ashamed to tell people that you have it.”

“We are grateful for each day, for our Parkinson’s community, family and friends,” Kristine concludes. “There is help. There is hope. And together, we’ve got this.”

To learn more about Parkinson Canada or to donate, please visit parkinson.ca.