The Human Side of Parkinson’s: Personal Reflections
The Human Side of Parkinson’s: Personal Reflections
Parkinson’s disease is more than just a medical diagnosis – it’s a deeply personal journey that affects every aspect of a person’s life. Through the stories of those living with Parkinson’s, we gain insight into the human experience behind the symptoms.
For many, like Kathleen Blake, the path to diagnosis is not always straightforward. Kathy experienced symptoms for five years before receiving her Parkinson’s diagnosis, initially attributing changes like reduced arm swing to arthritis and aging[7]. This delay in diagnosis is not uncommon, highlighting the importance of increased awareness and education about early Parkinson’s signs.
Once diagnosed, individuals face the challenge of adapting to life with a progressive neurological condition. Cindy Feinstone’s story illustrates the complexities of navigating medical care with Parkinson’s[4]. Despite careful preparation before a knee replacement surgery, Cindy encountered numerous issues in the hospital related to her Parkinson’s medications and care. Her experience underscores the critical need for better Parkinson’s education among healthcare providers.
The emotional impact of Parkinson’s cannot be overstated. As Tammy Corrigan shared, receiving a diagnosis at just 50 years old was life-altering[5]. However, Tammy found hope and empowerment through exercise, which has helped her manage symptoms and maintain an active lifestyle. Her story demonstrates the importance of staying engaged and finding strategies to live well with Parkinson’s.
For many, Parkinson’s becomes a family journey. Ron and Amy’s experience during a hospital stay for COVID-19 highlights the crucial role of caregivers in advocating for proper Parkinson’s care[2]. Their persistence in ensuring Ron received his medications on time likely made a significant difference in his recovery.
Living with Parkinson’s often means facing fears and uncertainties about the future. As one individual shared, “There is something about aging that involves fear of the unknown. There is loss and surrender, which causes me to fear.”[10] Yet many also find new purpose and connection through their Parkinson’s journey. Kathy Blake, for instance, has become passionate about raising awareness and volunteering with the Parkinson’s Foundation[7].
Advances in treatment offer new hope for many with Parkinson’s. Kate, a 75-year-old patient, recently became the first in the U.S. to experience a groundbreaking computerized deep brain stimulation treatment[14]. This technology adapts in real-time to a patient’s brain signals, potentially offering more personalized symptom management. For Kate, it has renewed her hope of spending quality time with her grandchildren.
While medical advancements are crucial, the human side of Parkinson’s reminds us of the resilience, courage, and spirit of those living with this condition every day. Through sharing their stories, individuals with Parkinson’s not only support each other but also educate the wider community about the realities of life with this complex neurological disorder.
