I'm Zoe Jane Vanche, and I am going to share my account of the unexpected journey that began when Parkinson's disease entered my life. In 2015, my grandmother became the unwitting host to this uninvited guest, followed by my grandfather in 2020. Upon discovering my grandmother's diagnosis, we were thrust into a world we knew little about. Navigating the unknown of Parkinson's disease for her was a journey we hadn't anticipated, and we could have never foreseen that my grandfather could also be diagnosed years later. The five-year gap between their diagnoses felt like uncharted territory, a sort of "test run" that granted us valuable insights by the time my grandfather's diagnosis came around. Throughout that period, my grandmother's dependence was more pronounced than it is now. Recently, it appears that the symptoms for both of them have progressed, possibly exacerbated by the stress of caring for each other. Their individual experiences with the disease vary; as my grandmother's tremors have advanced much more than my grandfather’s, my grandfather has seen a decline in speech and his swallowing abilities. Despite the hardships, there's a certain solace in knowing they understand each other's struggles and are motivated to support where the other may falter.
Parkinson's is not a one-size-fits-all condition and shows no discrimination. It reveals itself uniquely in each individual, and the progression is a deeply personal narrative. Witnessing my grandparents grapple with Parkinson's has been an emotionally charged journey. What were once routine tasks transformed into formidable battles, and the vibrant energy that once defined their lives dimmed under the encroaching shadows of the disease.
My grandmother's severe hand tremors turned once simple tasks like sharing a meal with our family, writing, and fastening buttons into intricate endeavors that she now relies on assistance for. Conversations, once fluid, were interrupted by pauses and a diminished ability to project one's voice, creating an unspoken understanding of the lingering frustration. The gradual onset of bradykinesia affects my grandfather's once steady gait, making routine activities such as walking or dressing an almost impossible process. Both grapple with muscle rigidity, turning to reach for items or tying shoelaces into extremely taxing efforts. Postural instability heightens the risk of falls, making my grandparents cautious even during seemingly routine actions like standing up from a chair, which my grandfather can no longer do on his own. Beyond these physical symptoms, my grandparents also contend with non-motor symptoms such as cognitive changes adding layers of intricacy to their daily lives.
The stubbornness of aging aids in emotional strain due to neither wanting to admit defeat or accept help, leaving them to fully rely on each other in everyday life yet they both are facing the non-forgiving limitations Parkinson's places on its victims. Yet, in this, you can see the strength of their bond, their reliance on each other, and the resilience that comes from their commitment to facing life's challenges side by side. This complex tapestry of challenges underscores the depth of the impact Parkinson's has on our family's daily existence.
ADVICE FOR OTHERS...
As a family member alongside someone facing Parkinson's, it's been a profound experience of learning and adapting. Understanding the symptoms, the disease's progression, and available treatments have empowered us, facilitating better communication with our healthcare team and family. Regular check-ups with specialists have become a regular part of our routine, bringing both moments of hope and challenges as we navigate changes in our loved one's condition. Our home has transformed into a supportive haven, adjusting to the unique needs that Parkinson's presents. Encouraging physical activity is not just about exercise; it's a shared pursuit of finding joy in mobility and overall well-being. Embracing a healthy lifestyle has become a joint effort, symbolizing our commitment to the journey ahead. Connecting with others through a myriad of support systems has offered solace and a sense of community while staying informed about research feels like light at the end of a dark tunnel. Consulting with healthcare professionals has become a vital source of personalized guidance, reassuring us that we're not alone in this deeply personal and emotional process. Lastly, patience has emerged as a crucial virtue. There's no one-size-fits-all blueprint for someone living with Parkinson's or for those supporting them. Every individual is navigating this unique experience for the first time, as each diagnosis is distinct. Maintaining a positive outlook and having a plan to embrace each challenge that Parkinson's brings is essential, recognizing that no one is fully prepared for the unexpected aspects of living with this disease.
MY WORK WITH PAA...
Before this unwelcome intrusion, Parkinson's was a concept unfamiliar to me, and I never imagined it could touch my family, let alone fathom the profound impact it would have on the lives it touched. My grandparents' journey, coupled with my passion for aiding those affected by this disease, led me to join the Parkinson's Association of Alabama. In this role, I've witnessed their authentic commitment to improvement and the pursuit of a cure. Through sharing my story and the ongoing efforts of the PAA, I hope to raise awareness and prevent others from experiencing the impact my family and I have endured. Together, let's work towards a future free from the grip of Parkinson's.
Zoe Jane Vanche is a member of the Parkinson Association of Alabama's Junior Board serving as a young professional in leadership on special projects with the Board of Directors and Staff of PAA.