Living with Parkinson's: A Woman's Journey of Management and Resilience
Gila Batori, diagnosed with Parkinson's disease 13 years ago, shared her experience navigating the condition, emphasizing proactive management over letting the disease dictate her life. Initially experiencing a gradual slowing down, Batori's diagnosis came after a brief clinical examination. While not entirely unfamiliar with Parkinson's due to a friend's experience, she was surprised as she didn't initially associate herself with movement issues. The diagnosis came during a period of personal grief, having lost her partner 14 years prior and raising two children as a single mother while working in a job she loved.
Batori made the decision to inform her children, then in high school and the army, but stressed the importance of maintaining her independence and not burdening them with caregiving responsibilities. She believes open communication about the disease, while challenging, is less draining than concealment. Her close circles, including colleagues and friends, provided significant support, which she values highly. She feels she hasn't fundamentally changed as a person but has adjusted her priorities.
Her approach to living with Parkinson's involves making difficult daily decisions, such as stopping driving due to tremors and difficulty with reaction times, a choice made out of responsibility. Conversely, she adopted a dog, finding joy and companionship despite the physical challenges it sometimes presents. This balance between acknowledging limitations and embracing life's joys is central to her coping strategy.
A turning point for Batori was joining a dance class for people with Parkinson's. She found that the physical and cognitive benefits of dancing, coordinated with music, significantly improved her well-being. This experience led her to adopt the mantra, "I work on Parkinson's," signifying her commitment to actively managing the disease through consistent effort in areas like exercise, nutrition, sleep, and social interaction.
Planning is crucial for Batori, as spontaneity is often compromised by Parkinson's. She meticulously plans her days and even travel, considering medication schedules and potential physical limitations. She highlights the importance of continuous communication with her neurologist, advocating for oneself to explore different treatment options, including a subcutaneous pump that offers more freedom than frequent oral medication. Despite advancements, she acknowledges the reality of 'off' periods where symptoms are less controlled, underscoring the need for immense patience with oneself and others. Her advice to others facing Parkinson's is to remain engaged, seek support from various sources, and never settle for a suboptimal treatment plan.
