Just three days before my 50th birthday, my husband Derek was diagnosed with Parkinson Disease (PD). Instead of enjoying plans for a birthday celebration, we stayed home to unpack our new reality. As a nurse, I have cared for folks living with PD over the years, so my mind immediately jumped to the future losses Derek would experience. I worried about paying the bills one day when neither of us could work because of PD advancement and caregiving responsibilities.
We immediately recognized gaps in health services for people with PD, so I wrote letters to politicians to share our concerns. It provided an outlet for my worries and something tangible I could do to impact change. Although we could not change Derek’s diagnosis, we could influence other changes. I swirled in worry for months after Derek was diagnosed. It was a really challenging time.
In September 2024, I was privileged to volunteer with Step n’ Stride in Yellowknife, NT. It was our first Parkinson Association of Alberta & NWT walk. It was an incredible day. The love and support we felt were truly overwhelming and very much appreciated.
We have passed the 2-year mark since diagnosis, and life continues to move forward despite my earlier concerns. We no longer focus on things to come and impending loss; we have chosen to focus on everyday things that bring us happiness. No one truly knows what tomorrow will bring, and worrying about the future only steals joy from today. We have chosen joy over worry.
If you or a loved one are living with PD, know there is hope, happiness, and life beyond diagnosis. While some days may look different than before, they can still be filled with meaning, love, and purpose. Our new reality has made us more intentional about how we live our lives and spend our time, whether at work or with those who are important to us. If not for PD, we may not have had the courage to make these changes.
Derek’s diagnosis altered our path in life to one we would not have travelled without PD, but the path is still pleasant. Choosing hope and joy does not mean we stuck our heads in the sand and ignored PD; trust me, there is no ignoring it. We have had hard conversations about what is to come, made plans for the “what ifs,” and connected with the PAA for support. We know that with the PAA and our amazing friends and family by our side, we are not alone on this journey.
