My mother was an independent and strong-willed lady. She didn’t confide in me about her medical issues, although she did tell her friends. My father reached out to me when he heard from Mom’s friends that she wasn’t feeling well, but she never disclosed exactly what was wrong.
We consulted over fifteen neurologists, and the answer was always the same—Parkinson’s disease. In 1998, we accepted the diagnosis. We had never heard of Parkinson’s Disease before that.
Our family worked with various specialists—neurologists, physical therapists, occupational therapists, and speech therapists. We tried many interventions, including medications, physical therapy, and even medical marijuana. Reading, researching, and speaking with others, I tried everything to avoid any regrets. We took her to countless doctors and specialists, hoping for some relief. Looking back, I would have done nothing differently, as no other available options would have been effective. It finally sank in—there was no cure.
By 2014, we began to notice significant changes that affected her quality of life. Mom expressed frustration with her routine activities. We noticed her left arm was hurting, and she had trouble cutting her food. Her left hand trembled, and her movements slowed down. At first, we rationalized these changes as natural aging. But as time went on, the symptoms worsened, and my curiosity turned into deep apprehension. I witnessed her daily struggles, from tying her shoelaces to holding a cup of tea without spilling it.
I had no formal training or experience as a caregiver. I stepped in because my mother needed me. I relied on my intuition, extensive research, and consultations with experts to determine what was best for her. I was soon to find out that Parkinson’s affects not only someone with Parkinson’s Disease – it takes a toll on the caregiver. I mirrored many of my mother’s struggles—health issues, physical well-being, and mental fitness. I developed acid reflux, was often exhausted, and felt at my wit’s end. Despite my efforts, I often felt unequipped and suffered alongside her. I coined the term “secondary Parkinson’s” to describe my experience of sharing in my mother’s daily struggles without having the disease myself. There was no support or help for caregivers like me. My life was difficult to manage between Mom, family, and work. Initially, caregiving felt like juggling a few tasks, but it soon became like carrying an entire universe on my shoulders.
Sadly, my mother, Sharon Riff Ackerman, passed away in 2020 at the age of 69. The combination of Parkinson’s Disease and dementia took her.
Through it all, my mother remained strong, and her spirit continues to inspire me to advocate for Parkinson’s Disease awareness and support for caregivers. My book, A Son’s Journey from Parkinson’s Disease Caregiver to Advocate, is a memoir and tribute to my mother, Sharon. It explores her journey with Parkinson’s Disease and my experiences as her caregiver.
Dr. George M. Ackerman is a college professor in criminal justice, business, and law. He received his Ph.D. from the School of Public Service Leadership, Capella University; J.D. from the Shepard Broad Law Center, Nova Southeastern University; and police certification from Miami-Dade College School of Justice. His current energy is focused on advocating for a cure for Parkinson’s disease through a wide range of avenues and outreach activities. He founded TogetherForSharon.com in memory of his mother, to increase Parkinson’s awareness and research toward a cure. His book, A Son’s Journey from Parkinson’s Disease Caregiver to Advocate, is available where fine books are sold.
