A life built together

My name is Nel, and partnership has shaped every stage of Rick’s and my life. We first met as teenagers and later married at 19 and 21.

Rick spent most of his career travelling across British Columbia as a self-employed sales representative, enjoying the independence that came with life on the road. Eventually, he bought a small RV so he could travel more comfortably and avoid staying in hotels.

I followed a different path, working as a piano teacher for 30 years before being inspired by a friend to go back to school and train as a care aide. What I thought would be a short career turned into 12 years supporting others—an experience that would later shape my own life in ways I couldn’t have imagined.

Noticing the changes

Rick’s always been active. He loves running, cycling, and spending time outdoors, so when his balance began to shift, I noticed it right away. At first the changes were subtle, but they gradually became harder to ignore as he started to fall more often, sometimes resulting in injuries.

When he began falling off his bike—an activity he had always done with such confidence—it raised serious red flags.

Because of my background as a care aide, I began to wonder if the changes I was seeing in Rick could be connected to Parkinson’s. Even with that hunch, it still took months before we were able to see a neurologist and get clear answers.

I started to realize that navigating care was complicated and often frustrating

Challenges in care

After Rick’s diagnosis, I started to realize that navigating care was complicated and often frustrating. Our family doctor sent several referrals to neurologists because the wait times for specialists were so often extremely long.

When we finally received the diagnosis, it was delivered quickly, and followed by even more waiting for an MRI and other tests. Since then, his care has been limited to brief annual appointments and medication adjustments, with little opportunity to speak up and address what else is going on between these brief appointments.

There have been times when I’ve come prepared for these appointments with a long list of questions and changes I’ve observed in Rick, only to feel rushed and dismissed by medical staff.

The impact on our daily lives

As Rick’s needs increased, the reality of how much our lives were changing began to hit us. By 2022, I made the difficult decision to retire earlier than I’d planned because it wasn’t safe to leave him alone. I found myself constantly checking in, calling or texting while at work, and rushing home during breaks if I didn’t hear back.

Our lives now revolve around Parkinson’s, with every outing, every visit, and every decision requiring a plan. Even something as simple as visiting family means packing walkers, bathroom safety equipment, and anything else Rick might need.

Our lives now revolve around Parkinson’s

Finding strength and support

Over time we’ve found ways to adapt and stay focused on what still brings us joy. One of the most meaningful supports for us has been a local boxing program for those living with Parkinson’s. It’s been a game changer for both of us. Rick gains strength and connection, and I’ve found a supportive community of care partners.

I’ve also learned how important it is to take care of myself: taking long walks, spending time with friends, and staying grounded in my own interests. Through it all, Rick has shown incredible patience and resilience. Together, we’ve learned to focus on what we can still do, making the most of each day.

Looking ahead

Care partners play a vital role in the daily lives of the people they support, yet our experiences are often overlooked. More accessible, responsive care along with more consistent support for people affected by Parkinson’s would make a significant difference for families like ours.

No one should feel like they have to navigate Parkinson’s alone. If you’re at the beginning of this journey, reach out to someone you trust, a support group, or a community program.

Life with Parkinson’s can feel overwhelming, but connection and support can make all the difference.