A son goes from Parkinson’s caregiver to Parkinson’s advocate
George Ackerman lost his mother, Sharon, to the disorder when she was 69
George Ackerman wrote "A Son's Journey From Parkinson's Disease Caregiver to Advocate" to help him process his grief after losing his mother, Sharon, to the neurodegenerative disorder four years ago.
George Ackerman lost his mother to Parkinson’s disease in 2020 when she was 69, and he still grieves for her. But he is also driven — to honor her, to raise awareness about the neurodegenerative disorder, and to support the search for a cure.
He maintains a website, hosts a podcast, and is the author of the recently published book, “A Son’s Journey from Parkinson’s Disease Caregiver to Advocate,” a poignant, informative, and often painfully raw book that tells the story of Sharon Riff Ackerman, from the former teacher’s early life in Brooklyn, New York to her protracted and ultimately intense battle with Parkinson’s.
The book is also meant to recount Ackerman’s experiences dealing with his mother’s disease. The two were exceptionally close. In a phone interview with Parkinson’s News Today, he called Sharon, who’d been a single mother to him and his brother, Andrew, after a divorce from the boys’ father, his best friend, someone he spoke with “a hundred times a day.” He refers to himself as “Sharon’s son.”
“Some days, even now, I can see her blowing bubbles with the children in our backyard. I thought she would do this for years, but it was not to be because of Parkinson’s,” Ackerman writes. “This saga is admittedly for my release, maybe to continue to feel close to her, and possibly to exorcise my nagging feeling that, like many relatives and friends of [Parkinson’s disease] sufferers, I could have done more. However, rationally, I know that wasn’t possible.”
For caregivers and loved ones
Another purpose of the book is to help Parkinson’s patients, and their caregivers and loved ones, confront the disease. Ackerman also hopes “A Son’s Journey,” which offers resources and practical suggestions, serves as a guide for dealing with Parkinson’s.
“My experiences with my mother and family are undoubtedly different from yours, but we all have similar feelings, questions, and thoughts,” he writes. “So, I share mine in this book. I hope my journey offers insights into yours. It is acceptable to recognize, admit, and face our painful, difficult, and sometimes contradictory feelings — and they are all completely natural.”
George Ackerman, right, lost his mother, Sharon, to Parkinson’s disease in 2020 when she was 69 years old.
Ackerman also seeks to reach people around the world who’ve never heard of Parkinson’s, which, early in his mother’s journey, included him. “Until we ensure that others are made aware, a cure will be further from our grasp,” he writes.
Several chapters in Ackerman’s contain journal entries that document his mother’s decline, the steps he took to help her, and how he was feeling emotionally.
A resident of Florida, Ackerman is a college professor with a PhD in criminal justice. He also holds a law degree and a master’s in business administration. He and his wife, Grether, have three children.
“I believe I am only the man I am today due to my mother’s sacrifices, and I am forever grateful,” writes Ackerman, whose mother and father, a physician, were married for 23 years before divorcing in 1995. After that, his mother and her sons moved to Florida to be near her mother and sister. They were happy for many years, then the symptoms began. There was no family history of Parkinson’s.
“The first troubling signs were in 1999 and progressively became worse,” Ackerman writes. Sharon was first put on medication in 2000. “In 2005, when she was in her early 50s, her left arm became rigid. I was very busy with law school, the police academy, my doctoral duties, and building my own family.”
Sharon’s symptoms got worse after a decade. Her left arm hurt while eating or performing everyday tasks, and Ackerman noticed she was having trouble cutting her food, which frustrated her.
He learned later from a relative that she may have been diagnosed with Parkinson’s as far back as 1984, but if she has been, she never mentioned it to him.
Maybe just natural parts of aging
At the time, the family dismissed her symptoms as arthritis. Sharon soon began to lose the ability to use her left arm and hand. Muscle cramps, she told herself.
“Then, I noticed other things,” Ackerman writes. “Her left hand trembled and her movements became slower. At first, I rationalized these things as natural parts of aging — so little was known about her condition or how serious it would become.
“But as time went on, the symptoms worsened, and my curiosity turned into deep apprehension. I witnessed her daily struggles, from the simple act of tying her shoelaces to the challenging task of holding a cup of tea without spilling it when her hand shook.”
Ackerman’s father was also aware of his mother’s symptoms. He was an orthopedic doctor ,but had a number of patients with Parkinson’s. He was familiar with Sharon’s mask-like visage and the “cogwheel” rigidity of her wrist that would make clicking noises when she moved it up and down.
When the dosage of her medication was changed by her doctor, it caused dramatic side effects. “It was likely the turning point that started her immediate decline,” Ackerman said.
Still, Sharon was able to live a relatively normal and independent life until the final three years, 2017 to 2020, when she needed more support and ultimately came to totally depend on Ackerman.
“One night in October 2017, I suddenly woke up at around 3:00 a.m. It was my father from New York. He was frantic and yelled that I needed to get over to my mother’s house immediately. She had managed to call him in New York to beg for help. I rushed to her home and found her having a panic attack. That night changed our lives forever.
“A neighbor of hers had called my father to let him know that, in the pitch black of night, my mother was outside, moving her furniture into the middle of the street,” he wrote.
Ackerman took Sharon to the hospital, where she was diagnosed with a urinary tract infection. “After that night, though, I recognized that Parkinson’s disease and dementia had set in and escalated, causing her delusions and hallucinations.”
After a brief stint at a rehabilitation facility, it became apparent that Sharon could no longer live alone. “This is where my journey began in search of caretakers, “ Ackerman wrote. “…The hospitalization, the rehab, and her mental crisis marked a new chapter of her Parkinson’s journey.”
‘Together for Sharon’
For Ackerman, it was all so overwhelming. “Watching your mother who walked three to four miles a week go from a cane to a walker, then the wheelchair, it didn’t make sense,” he said in the interview. “All the anguish, fear, sadness, and depression. From a healthy, beautiful weight to bone thin.”
As Ackerman and his wife looked after Sharon, they were thrust into the world of home care aides and long-term care. “We started an in-depth journey to learn what Parkinson’s was. From that night, everyday things continued to worsen and became especially severe over the final year before she passed on New Year’s Day of January 2020,” he writes.
Ackerman established a website, TogetherForSharon.com, which includes interviews he conducted with Parkinson’s community members and others, information about Parkinson’s organizations people can donate to, and more about Parkinson’s, the writer, and his family’s mission.
Ackerman also hosts a podcast with his wife, also called TogetherforSharon, where he works to raise awareness about Parkinson’s and speak to his hope for a cure. The podcast, which is produced 30 times a month, also seeks to offer support and share inspiring journeys and advocacy efforts.
“I have hope we’ll find a cure, but the awareness is not easy,” he said. “I don’t sleep. I’m trying to figure out how to end this disease.”
Ackerman said the book was difficult to write, but working on it helped him cope with his loss. “I felt that the world needed to hear a son. There isn’t one book in the world from a son who lost his mother to Parkinson’s.”
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