Parkinson’s disease (PD) is the fastest-growing neurological disorder in the world, yet the standard treatment for it, levodopa, is already 50 years old. Diseases like breast cancer, AIDS and polio have strong advocates and champions, which is why funding for their research and treatment eclipses that of PD.
“Still” (2023) is an Emmy-nominated documentary about PD’s ultimate poster boy, Michael J. Fox. Beautifully directed by Academy Award winner Davis Guggenheim (“Training Day,” “An Inconvenient Truth”), “Still” explores the life of the well-loved actor and what ensues when “an incurable optimist confronts an incurable disease.”
The editing is brilliant. While incredibly moving and inspiring, it’s not depressing. Fox entertains and pops out the funnies, like “Gravity is real, even if you only fall from my height,” in explaining his many injuries due to PD. When asked why he made the film, the 62-year-old (diagnosed at age 29) said he did it while he still could. It gave me a sneak peek into what may be my future.
After my previous article (“I have Young Onset Parkinson’s Disease: What it’s like,” Oct. 3), some people reached out regarding my Young Onset Parkinson’s Disease (YOPD). A friend worried that she might be afflicted with it; as neurological issues run in her family, she exercises like a beast, hoping to prevent it. A few suggested doctors or alternative treatments; others offered prayers and verbalized support. One revealed a family member stricken with PD after getting COVID-19, while another shared her mother’s experience with the disease before she passed away. A stranger my age has my symptoms and sought me out to connect and swap stories.
These conversations are what I want to normalize with my disclosure. While friends spoke of my purported courage, I see nothing brave about it. It was scary to “show my cards,” and it did make me feel vulnerable, but I realized that the only way to wrangle with PD is head-on. There is nothing to gain from tiptoeing around the elephant in the room.
Genetics, other factors
“Parkinson’s disease is not just about movement problems, but a multisystem condition with nonmotor symptoms,” said neurologist Dr. Allan Wu in a 2022 “Brain & Life” podcast.
The process leading to PD may be an environment with a fertile genetic background, theorized Jeff M. Bronstein, MD, PhD, director of the Movement Disorders Program at the University of California, in “The Latest in PD Research 2023,” a YouTube presentation for the Parkinson’s community. Only about 30 percent of PD can be explained by genetics, with PD pathology originating in the gut and nose, entry points for environmental toxins.
Other than genetics, advanced age, being male, pesticides, air pollution, solvents and head trauma increase one’s risk for PD. Smoking/drinking alcohol/coffee, exercise and a Mediterranean or vegan diet are associated with a lower risk (but don’t start smoking or drinking just to avoid PD!).
Bronstein explained that the symptoms one experiences depend on what part of the nervous system is involved. Constipation happens in the gut, loss of smell affects your olfactory system, sleep problems and depression impact your brain stem (serotonin neurons), while tremors (which occur in four out of five Persons with Parkinson’s or PWP), stiffness and slowness involve the substantia nigra (dopamine neurons). It is at this point that PD is diagnosed. Then, cognitive problems occur in the cortex. Others present with acting out dreams (during rapid eye movement or REM). Since these symptoms aren’t particularly definitive of PD, consulting with a neurologist can confirm any suspicions.
He added that the disease process spans decades: 20 years before clinical onset, the patient may be having hyposmia (decreased sense of smell), constipation, or a bladder disorder. Ten years later, there may be sleep problems, obesity and depression.
PD is usually uncovered when there is already unilateral tremor, rigidity and akinesia (inability to move one’s muscles and limbs at will). In 10 years, balance issues may be experienced, followed by falls, dependency and cognitive decline. In 20 years, the patient may have dementia or be chair- or bed-bound.
Assurance
In an episode of “Substantial Matters: Life and Science of Parkinson’s,” Dr. Michael S. Okun, a neurologist, said, “It’s not a death sentence, so don’t panic. The outlook can be good if you have a strategy that’s gonna lead to short-term and long-term success.”
This was the same assurance my neurologist gave me, and she encouraged me to continue with my physical activity and even amp it up, as “forced exertion” has been proven in studies to manage symptoms.
I went through a period of self-flagellation, racking my brain for what I may have done wrong. Was it using nonstick pans for cooking? Not buying organic? Most likely because I’m chronically sleep-deprived. I already exercised almost daily and adhered to a vegan diet. Then I read about astronauts, musicians and athletes getting PD despite being physically and cognitively fit.
Wu advocated for society to educate themselves about the disease and be nonjudgmental and supportive of patients affected by neurologic conditions. He encouraged PWP to engage brain and body movements simultaneously for cognitive and physical health.
My bucket list items have been fast-tracked. Overcoming anxiety, I’m now more intentional about connecting with friends and joining online communities like Parkinson’s Fight Club. On top of jogging and yoga, I have returned to jiujitsu and taekwondo for extra mind-body challenges, something I learned was crucial in the Power for Parkinson’s HIIT workouts for YOPD on YouTube that I’ve also tacked on. I may never get to the bottom of how I got PD, but I’m doing my darnedest to keep my symptoms mild for as long as possible. —Contributed