This month, Leslie Rodier shares with us her family’s Parkinson’s story and how she learned to care for herself while balancing her family’s needs. Leslie’s husband Bob Potter serves on PCLA’s Board of Directors.
In September 2006, Bob was diagnosed with Parkinson’s. Just writing that, I remember the punched-in-the-gut sensation even though I (we?) had suspected PD was the cause of the tremor he’d had for some months. Ironically, Bob’s diagnosis was the least horrible thing I experienced that year. That January, my father had lost tens of thousands of dollars to scam artists, so I could no longer ignore the dementia that was overtaking him. Even worse, “something was wrong” with my older sister, who was being consumed by a more virulent, early-onset dementia. Diagnosis withstanding, Bob was still working and living life as we had known it, albeit with a tremor. Our son was in second grade so life at Beverly Glen Blvd carried on while I travelled back and forth to Virginia to help family members who could no longer help themselves.
In retrospect, I’m embarrassed that Bob’s early PD years were the least of my worries, but that’s my story and I’m sticking to it. Our family processed the mental shock slowly and we tried to share the information with our son honestly, but in limited doses. Watching him process the sadness was the hardest part of those first several years. None of us wanted PD for Bob or our family, but changes were what we faced – Bob stopped riding his bike off-road as balance became trickier, and after several years he stopped working because the stress and long hours made it impossible to take care of himself. He has stuck with a regime of exercise, the best possible adherence to meds, and keeping involved. We transitioned from a two-career family to a single-earner family at the same time that I assumed increasing responsibility for my father and sister, ultimately moving both of them from Virginia (where I grew up) to residential care facilities in Sherman Oaks. I felt like a cartoon character whose eyes were spirals of anxiety and I worried I would drown in my responsibilities. Yet I survived.
How did that happen? I stumbled across a caregivers support group near our home (since relocated to Leeza’s Care Connection). It wasn’t geared towards PD but it taught me the basics of care partner maintenance and to “put on my oxygen mask first” – meaning take care of my own health with exercise and nutrition, and find ways of recreating (knitting, for me) that didn’t require me to wait until things calmed down to begin. My mantra became “left foot, right foot, and repeat.”
Going on fourteen years later, my father and sister are gone but Bob’s Parkinson’s is still here. Both things are true – he is doing as well as possible with PD, AND, Parkinson’s is a neurodegenerative disease that has changed him in innumerable ways. We’re fortunate that he is still able to drive safely and is completely independent, but neither of us can deny that will last indefinitely. All care partner’s stories are different, just like PD progression is different, but self-care is the best thing we’ve got.
Are you a care partner with a story, resources, or tips to share? Please reach out to us!