Attending the World Parkinson Congress for the first time was an awe-inspiring and transformative experience, bringing together a global community of people with Parkinson's disease, sparking empowerment and advocacy among attendees.
In October 1984, a thirteen-year-old girl called Sara sat in a small village hall in northern Sweden enjoying a folk music concert. “Everyone was clapping their hands and stomping their feet,” Sara recalls, “and I wanted to do the same. I could clap my hands, but when I tried stomping my feet, I discovered I couldn’t. It was as if the signals couldn't go from my brain to my feet.” This is Sara’s earliest memory indicating that something was wrong.
In 1996, a 27-year-old London-based surveyor called Tom Isaacs was diagnosed with Parkinson's disease. Like others before him, he struggled to come to terms with his new identity. As he put it, “The truth was that I was now trapped inside a body that was now ageing at an alarming rate and was often incapable of responding to the demands put on it.”
Every Parkinson’s patient is curious about what the future holds. One way to anticipate what’s coming is to learn from parkies further along in their disease. Unfortunately, it turns out that while many patient memoirs chronicle the early years of PD, there are very few accounts that document the long-term trajectory of the condition. An exception is Joel Havemann’s smart book, A Life Shaken.