My Mom and Grandfather Had Parkinson’s Disease Like Michael J. Fox. Am I Next?

Author grapples with her destiny after watching new Fox documentary ‘Still’

Bobbi Dempsey,

AARP

Comments

En español

Published May 16, 2023

Michael J. Fox in a frame from his 2023 documentary STILL

Michael J. Fox in "Still: A Michael J. Fox Movie."

Apple TV+

I can’t recall the precise moment — or even the year — when my mother, Marcelle, received her Parkinson’s disease diagnosis. I’m not even sure it was ever actually delivered in an official way.

My sister and I spotted it long before any doctor put it on paper. We exchanged silent glances when her hands started twitching with involuntary movements or the changes in her gait made her steps unsteady.

The first tremor was surely terrifying for her, although it would have been almost imperceptible to an observer. No doubt, she felt an immediate and overwhelming sense of dread, knowing all too well the significance of what it could — inevitably would — mean. Parkinson’s was, after all, the disease that had cruelly ravaged her father’s body several decades before.

Plagued by anxiety her entire life, my mother had likely been on alert since my grandfather’s death, watching for the slightest sign that the disease that took control of his body was silently lurking in her own DNA.

By contrast, one of her heroes says he knew almost nothing about the disease before he received the shocking diagnosis — although he has now become the public face of Parkinson’s.

An unexpected diagnosis becomes a mission

In a new documentary, Michael J. Fox recalls his first reaction upon receiving his Parkinson’s diagnosis at the unusually young age of 29: “How could I possibly have this old person’s disease?” The actor — who was achieving incredible success and enjoying all of the perks of being a young Hollywood A-lister — then cynically viewed the news as a sort of karmic attitude adjustment. “I should have seen it coming,” he recalls in the film. “The cosmic price I had to pay for all my success.”

In reality, of course, Parkinson’s is neither a condition that only affects older people nor the universe’s way of leveling the score for someone basking in the spotlight. It is, however, a progressive, incurable condition that can have a life-changing impact for those with the disease and their families.

In Still: A Michael J. Fox Movie (in theaters and on Apple TV+ May 12), Fox provides updates about his health and shares (often literally painful) insights about his daily reality of living with Parkinson’s disease, while also narrating highlights of his early years and the evolution of his acting career. It isn’t your typical “feel-good” movie, although it will surely leave you feeling inspired. The film is powerful, well-made and at some points tough to watch, especially for anyone whose family — like mine — has been touched by Parkinson’s.

We watch as Fox struggles to answer questions, his speech becoming more incoherent as he realizes he waited too long to take his Parkinson’s meds. Then we realize his face is bruised, which he explains is the result of one of his frequent falls. And later, he actually falls as the cameras are rolling, while he’s taking a walk with the assistance of his physical therapist — a walk in which each step seems to take considerable effort and concentration on Fox’s part.

Bobbi Dempsey and her mother Marcelle a few months before Marcelle's death

Bobbi Dempsey (right) with her mother, Marcelle.

Courtesy Bobbi Dempsey

Parkinson’s impact on generations of my family

As Fox said in a recent interview, “You don’t die from Parkinson’s; you die with Parkinson’s.” That’s because, technically speaking, people with the disease commonly die not from the disease itself but from falls, choking or other dangers for which they are at significantly increased risk.

My grandfather — who had severe Parkinson’s symptoms for the last few years of his life — died in 1976 at the age of 65 from aspiration pneumonia, which is caused when food, liquid or other substances are inhaled into the lungs instead of being swallowed. It’s a condition that frequently occurs among people with Parkinson’s. Given that it had killed her father, the prospect of choking was something that terrified my mother.

The trajectory of my mother’s disease was fairly typical. Her tremors and other symptoms gradually worsened. While the tremors and unsteady gait were the most obvious, the symptoms that were most distressing to my mother were the hallucinations. She experienced both auditory and visual hallucinations, which frightened her greatly.

In her last few years, she also suffered several serious falls — one of which caused a head injury, and another on Christmas morning that left her with a broken arm.

We tried to eliminate any possible tripping hazards. We bought her special spoons for people with Parkinson’s and encouraged her to use a headset or speakerphone when talking on the phone so she wouldn’t keep hitting herself in the head with the receiver. But we eventually realized it was impossible to make her world completely Parkinson’s-proof.

Poverty determines the patient experience

Several things make Fox’s experience highly unusual. There’s the age at which he was first diagnosed, much younger than the average. Now 61, he has lived with Parkinson’s for more than half his life.

Also — and this is something Fox has consistently acknowledged — he has resources and connections that give him access to the best specialists and the most innovative, cutting-edge treatment.

Sadly, my mother wasn’t so fortunate. Having spent her entire life in poverty, her treatment options were limited by her government-provided health insurance and the fact that she lived in a rural high-poverty area. Our town only had one neurologist and — even after we stressed that my mother urgently needed treatment — the office said she would have at least an eight-month wait for an appointment.

Although she was eventually able to get sporadic treatment from a doctor who established a part-time office in town, my mother’s treatment was primarily an ad hoc constantly fluctuating state in which her patchwork of doctors would try — and then often quickly abandon — a seemingly endless series of medications and therapies. She had several other serious health conditions, including diabetes, clinical depression and respiratory issues, so trying to find medications that helped her Parkinson’s symptoms yet wouldn’t aggravate her other conditions or negatively interact with her other medications was like an endless game of Whac-a-Mole.

Bobbi Dempsey's mother Marcelle visiting her feather's grave at cemetery

Marcelle visiting her parents' grave at the cemetery.

Courtesy Bobbi Dempsey

Contemplating an answer I might not want to know

A few years ago — when my mother’s disease was nearing an advanced stage in her early 70s — one of my doctors asked if I’d be interested in genetic testing, and I said I’d be open to learning more about it. Soon after, I received a packet in the mail from a laboratory connected to a major university, which was conducting a genetic research project specifically focusing on people with Ashkenazi Jewish ancestry and a family history of Parkinson’s disease. I fit their criteria perfectly. If I participated, researchers would analyze my DNA to see if I carried a genetic mutation that’s been linked to a greater risk of Parkinson’s disease.

I read the paperwork several times over the next few days, and even started to unwrap the packaging for the tube where I would collect my cheek swab sample. During that time, I went through a seesaw of thoughts likely very familiar to anyone who has contemplated the prospect of genetic testing for any sort of medical condition or inherited risk. While on the phone with my mother, who was distressed about her worsening symptoms, I glanced at the packet of paperwork sitting on my desk nearby. Do I really want to know what my future might hold? I wasn’t sure if I could handle the prospect of trying to proactively address any of my own dormant symptoms that might be on the horizon while simultaneously helping my mother navigate hers.

I’m a pragmatic person who tends to dive into a problem and attack it with practical solutions and an action plan. But there would be little I could do about whatever my DNA-driven destiny might be. As someone already prone to severe anxiety, it just seemed like I’d be giving myself something else to worry about.

In the end, I decided I just wasn’t mentally and emotionally up to it. At that point, my children were already young adults, so I worried about what the results might mean for not just myself, but also for them. As they watched their beloved grandmother live with the physical challenges of Parkinson’s, could I raise the possibility that their mother — or perhaps they themselves — might also have this disease at some point?

Recently, though, I’ve begun to think about it differently. While I’m still not certain I would want to know what my future might hold, I would like the opportunity to assist in research that might help identify genetic markers that could in turn lead to improved treatment for Parkinson’s, and perhaps even a cure.

I see that the foundation bearing his name, The Michael J. Fox Foundation for Parkinson’s Research (MJFF), has been leading similar research projects, and I know much of the research has led to important breakthroughs. I’m considering reaching out to see if the foundation is looking for volunteers for future research initiatives.

Michael J. Fox

Apple TV+

Using his platform to push for research — while sharing inspiration

My mother died from COVID-19 in February 2022. In the three weeks between her first COVID symptoms and her death, she was shuffled between numerous hospitals and other facilities within 45 minutes of her home. Ironically, even though our family had moved out of that city many years ago, she said her last words — telling me to “be careful” as I left to drive home in a winter storm — in the same hospital where her father had died 46 years before.

Obviously, she didn’t get a chance to watch Fox’s new documentary — and, frankly, I’m not sure she would have been mentally or emotionally strong enough to handle it. But she would have been thrilled to know that he is still enjoying many happy moments with his family. In the film, we see the entire family exhibiting incredible strength and support, while also making a point to treat Fox no differently than any other father or husband, with all the good-natured ribbing that entails.

Although they come from very different worlds, my mother was always a fan of Fox and greatly admired the important work he and the MJFF do to support people with Parkinson’s disease and to promote research aimed at finding a cure.

The fact that Fox continues to live his life publicly, accomplishing impressive things despite obvious physical pain and mobility challenges, is also important because it shows other people with Parkinson’s that there is reason for hope.

In the documentary, Fox notes that people tell him he has inspired them to do challenging things. The ambassador role is one he takes seriously. “That’s a huge responsibility, and I don’t want to f--- it up.”

Yet it seems unfair to expect Fox — who is clearly experiencing increasing physical challenges and admits he tried to strategically time his on-camera interviews to coincide with his medication regimen — to bear that weight on his own famously slight frame all the time. In the film, we see his physical therapist remind him on screen, “It’s OK not to be Michael J. Fox sometimes.”

%{postComment}%

Bobbi Dempsey is a freelance writer who has written about a variety of topics, including health and entertainment, for aarp.org and AARP The Magazine. Her work has also appeared in Parade, The New York Times, Harper’s and other outlets.