My life with Parkinson’s began six years ago. As a Registered Nurse, I had seen many people with Parkinson’s throughout my career, but I never expected to face it myself. I was 67, newly retired, and had just published a book on women, health, and exercise when I first noticed a tremor in my leg. My doctor initially thought it was simply a side effect of physical activity, but when the tremor persisted, I was referred to a movement disorders clinic. At 68, I received my official diagnosis.

Facing the Diagnosis

At first, I tried to hide my condition, but over time, my symptoms became more noticeable. Despite taking levodopa, my tremor worsened, and I developed dyskinesia—uncontrolled, involuntary movements caused by the medication. I had always known about Deep Brain Stimulation (DBS) and believed it could help me. After four years, my neurologist agreed that I was a candidate, and I began the rigorous screening process. The evaluation included an MRI, neuropsychological tests, and a levodopa challenge test to determine my response to medication. In June 2023, at 73, I underwent DBS surgery.

Life After DBS

Recovery was challenging, but the results have been life-changing. It took a few months to fine-tune my neurostimulator, but now I feel like I have my life back. I’m walking, golfing, cycling, and even playing the piano again. Some people are surprised when I tell them I have Parkinson’s because my motor symptoms are no longer visible. While DBS has improved my quality of life, it’s not a cure—I still deal with non-motor symptoms like sleep issues, voice changes, and fatigue. But I am grateful for the independence it has given me.

The Power of Support and Movement

Throughout this journey, support has been essential. I’ve connected with Parkinson’s support groups, a DBS specialist nurse, and even a personal trainer through Parkinson Canada’s CareFinder tool. She helped me regain strength post-surgery, and I can’t overstate how valuable that tailored support was.

For those newly diagnosed, my advice is simple: educate yourself and exercise. If you’ve never been active before, find a program designed for people with Parkinson’s. Even a daily walk makes a difference. Support groups and peer connections can also be incredibly valuable. Parkinson Canada offers many ways to connect with others facing similar challenges.

Moving Forward

Living well with Parkinson’s is possible, but it requires knowledge, support, and movement. My goal now is to share my story and help others navigate this journey. Hearing from people who truly understand the experience can be more valuable than anything else.