Carol’s Story: 25 years on from my Parkinson’s diagnosis, talking with and supporting other patients has kept me fulfilled
In 1998, I received a life-changing diagnosis: Parkinson's disease. At the time, I had a very active lifestyle; playing tennis, teaching aerobic dance classes and playing pocce in my spare time. I especially enjoyed long walks and hiking.
One day, I noticed that I was struggling to lift my coffee cup without spilling it. Upon visiting the family Doctor, I was advised to see a Neurologist. Following several consultations, I was finally given the diagnosis of Parkinson’s disease.
My first reaction was utter shock and disbelief, but I was lucky to have a loving family and supportive friends who stood by me and helped me to come to terms with my diagnosis.
Thankfully, my symptoms have remained relatively mild over the 25 years, and I mainly find that I move, eat, and speak a little slower than I used to. Luckily, Parkinson’s hasn’t cost me all my hobbies; I still play bocce and bridge and I enjoy reading. I still enjoy walking and hiking, only at a much slower pace.
From the beginning, I was determined not to be pitied. Instead, I chose to focus my energy in helping others facing the same challenges. I offered support to those newly diagnosed with Parkinson's, becoming a pillar of comfort and understanding for over 20 individuals over the years.
My advice to somebody living with the disease is simple: don’t isolate yourself. I think there is a perception that Parkinson’s is a lonely disease, but it doesn’t have to be.
In a bid to contribute further, I decided to join the Patient Engagement Council for Parkinson’s Research (PECPR). The PECPR unites Parkinson’s patients and supporting organizations worldwide and includes representation from the Parkinsons Foundation and Parkinson’s UK.
Through exchanging knowledge and patient experiences, we support a common goal: finding a cure for Parkinson’s.
Connecting with fellow patients over the years has been incredibly rewarding. Their stories provide unique perspectives beyond medical advice. Supporting others has given my life a profound sense of purpose and helped me to come to terms with my own condition.
To ensure progress in Parkinson's research, listening to patients and fostering collaboration is crucial. Symptoms can vary vastly between patients, making cohesive research imperative. By uniting researchers worldwide, we can expedite the journey to a cure.
As I reflect on my 25-year journey with Parkinson's, talking and supporting others have been my sources of fulfillment. I believe that sharing experiences and working together will lead us to a brighter future, free from Parkinson's disease.