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.
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.