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Vicky Stanich is all suited up, her fists poised in Barbie-pink TITLE boxing gloves; she’s ready to throw a punch at Parkinson’s disease. Stanich is in a St. Paul, Minn., gym among hanging punching bags, squat racks stocked with free weights, two boxing rings, and posters of champion fighters. When the coach gives the go, she lets loose with a left jab, then a right cross, followed by a feint and a bit of fancy footwork before a further one-two of punches. The jaunty taunt of a fellow boxer — Muhammad Ali, who also fought Parkinson’s — comes to mind: “Float like a butterfly, sting like a bee.”

Stanich, 65, is part of a Rock Steady Boxing class, along with 20 other boxers on this day. Each one has Parkinson’s and each one is fighting back against the disease.

Rock Steady Boxing is one of several progressive functional therapies for Parkinson’s disease (PD). Such therapies are based on movement as varied as tai chi, tango dancing, and cycling. A growing body of research shows that exercise is one of the best — and simplest — antidotes for this disease that has no cure.

Vicky Stanish
Vicky Stanich, 65, fights her Parkinson’s disease in a Rock Steady Boxing class in St. Paul, Minn

Movement aids mobility, agility, balance, and strength — motor functions affected by PD. This then boosts nonmotor functions like neuroplasticity, cognition, and mood. And the boxers have to remember sequences of punches and footsteps, which aids memory and eye–hand coordination.

In addition, programs like Rock Steady offer socialization and camaraderie, which can suffer when someone has a neurodegenerative disease. Plus, participants have to get up in the morning, round up boxing togs, and get to class — no small matter for some people with PD. These exercise-therapy classes are like support groups without the chairs.

“I get up in the morning and I’m stiff and hunched over. Then I box and I feel wonderful. I’m a lot more flexible and clear in my mind. Boxing got rid of my tripping when I walked. I have way more energy, and it helps me the rest of the day.”

“I never dreamed I’d be a boxer,” Stanich says, but after she was diagnosed in December 2018, she discovered the Rock Steady Boxing classes. She has been throwing punches now for four and a half years.

“I get up in the morning and I’m stiff and hunched over,” she says. “Then I box and I feel wonderful. I’m a lot more flexible and clear in my mind. Boxing got rid of my tripping when I walked. I have way more energy, and it helps me the rest of the day.”

After a moment to hydrate and catch her breath, Stanich is ready to go another round.

Understanding Parkinson’s

Like an earthquake, Parkinson’s often begins with a tiny tremor.

“I used to be an expressive, high-energy person,” recalls John Clayton. “But about seven years ago I found myself tired, exhausted, and trembling.”

His doctor remarked that his face seemed frozen into a mask and wondered aloud whether he might have Parkinson’s disease. Clayton went to a neurologist for the first of a seemingly never-ending battery of tests.

He was also starting to stumble as he walked. He began to have a difficult time swallowing, which led to drooling. He felt mired in sluggishness. He woke from sleep unrested and still weary.

Worse yet, he suddenly found himself without will — apathetic, lethargic, his only desire a lack of desire, as he describes it. “Sometimes I sit at my desk just looking into space while torpor and self-pity fill me.”

Clayton, now in his late 80s, notes on the first page of his memoir, Parkinson’s Blues, that PD settled on him like “a vulture.”

A novelist and professor emeritus of modern literature and fiction writing at the University of Massachusetts Amherst, he began documenting his experience with PD following his diagnosis. In part, it was to explain to himself and the world what he was going through. It was also to inform us all about living with the disease.

“I’m in a place I’ve never heard anyone describe: both alive and not alive. Like a ghost, I can look from a distance upon my children, my wife, our friends — and love those I look upon. . . . But secretly, inwardly, I’ll be separate, taking in the world without acting in it.”

But his writing had another motive as well. “The most painful part of having PD is what it does to my thinking,” Clayton explains. “Say I’m taking part in a discussion and I have an idea. The idea is clear enough when I start to speak, but at once the idea is gone. I try to get it together, but I can’t. I ask the other discussants to wait and I struggle to find the idea. But I can’t bring it back.”

Writing, too, is tough. But it’s also empowering and liberating — a way to step back into a semblance of his old self. “Paradoxically, writing about disorientation helps orient me,” he notes.

I’m in a place I’ve never heard anyone describe: both alive and not alive. Like a ghost, I can look from a distance upon my children, my wife, our friends — and love those I look upon. . . . But secretly, inwardly, I’ll be separate, taking in the world without acting in it.”

The Parkinson’s Pandemic

Chances are, you know someone with Parkinson’s. Some 1.2 million Americans are living with the disease as of this writing in March 2024; the counter at www.pdclock.org/counter/ updates approximately every seven minutes — the same rate at which a new person is diagnosed with PD in the United States. Ten million people worldwide have PD, according to the Parkinson’s Foundation.

There are a range of what are called “parkinsonian” or “parkinsonism” syndromes that can be caused by a stroke, brain injury, medication use, or infections, resulting in tremors and movement issues. Parkinson’s disease is one of these — and it is the most common cause of parkinsonism. In fact, PD is the second-most common neurodegenerative disease after Alzheimer’s. And no two people with PD exhibit the exact same symptoms, age of onset, rate of progression, or treatment response.

The prevalence of Parkinson’s is “rising exponentially,” says Ray Dorsey, MD, the David M. Levy Professor of Neurology at the University of Rochester and coauthor of Ending Parkinson’s Disease. “Parkinson’s disease is the world’s fastest growing neurological disorder.”

“Parkinson’s disease is the world’s fastest growing neurological disorder.”

This has spurred physicians and scientists to label it a pandemic.

“From 1990 to 2015, the number of people with Parkinson’s disease doubled,” Dorsey and his co-authors noted in a 2018 report in the Journal of Parkinson’s Disease. “Just due to aging, this number is projected to double again by 2040.”

“Today, more than 200 Americans were diagnosed with the disease and another 100 died from it,” Dorsey says.

And a growing aging population means that more people will experience Parkinson’s, he notes.

And sadly, he adds, it’s a largely preventable pandemic.

A Pandemic of Our Own Making

Parkinson’s is a “human-made pandemic,” Dorsey explains. Genetics, family history, and head injuries are among the myriad factors that cause PD. Yet only about 15 percent of all people with the disease have an identifiable genetic risk factor, he says.

The main culprits in Parkinson’s are human-created industrial chemicals, pesticides, herbicides, and solvents that are attacking us via air and water pollution and other chemical contact.

“The evidence for this connection is overwhelming,” Dorsey and his coauthors write. “Countries that have experienced the least industrialization have the lowest rates of the disease, while those that are undergoing the most rapid transformation, such as China, have the highest rates of increase.

“All of the evidence indicates that the full effect of the Parkinson’s pandemic is not inevitable but, to a large extent, preventable.”

“All of the evidence indicates that the full effect of the Parkinson’s pandemic is not inevitable but, to a large extent, preventable.”

The disease was first discerned and described as “the shaking palsy” in 1817 by future disease namesake Dr. James Parkinson in Great Britain at a time when industrialization was beginning to boom. But it wasn’t until recent years that scientists made the connection to industrial pollutants.

Our understanding of Parkinson’s as a disease largely of our own making comes thanks substantially to the trailblazing research of Caroline Tanner, MD, PhD, currently the vice chair for clinical research and a professor of neurology at the Weill Institute for Neurosciences at the University of California, San Francisco.

The first clue was uncovered in 1982. J. William Langston, MD, was then the chair of neurology at California’s Santa Clara Valley Medical Center, an affiliate of Stanford, and he was investigating a garage-brewed version of the opiate Demerol that caused parkinsonian symptoms in users. Langston zeroed in on the chemical MPTP, an accidental byproduct of the synthetic heroin, which was found to kill dopamine-producing nerve cells in the brain.

“Dr. Langston and others realized that this drug caused selective injury to the area of the brain that is also damaged in Parkinson’s disease,” Tanner told Neurology Today. “They figured out that it blocked mitochondrial respiration and caused oxidative stress, and when it was observed that MPTP was structurally very similar to pesticides like paraquat and rotenone, that led to the idea that agents like these might be potentially contributing to Parkinson’s.” (Learn more about the importance mitochondria and how to keep these power houses health at “The Care and Feeding of Your Mitochondria.”)

Tipped off by this connection, Tanner began in the mid-1980s to study the effects of pesticides, herbicides, solvents, and other chemicals. In the 40 years since, she has been prolific and tireless in leading the understanding of the environmental factors now linked to Parkinson’s.

Chemicals linked to Parkinson’s include:

  • Paraquat and other pesticides and herbicides: Also known by the brand name Gramoxone, paraquat is banned in 32 countries but is one of the most widely used weed killers in the United States.Its use tripled between 2008 and 2018.
  • Chlorpyrifos: The most widely used insecticide in the country, it’s sprayed on everything from golf courses to utility poles as well as crops, including almonds, cotton, apples, and other fruits. Other problematic pesticides include rotenone and 2,4-D.
  • Trichloroethylene: An industrial solvent also used in dry cleaning, TCE is found in between 4.5 and 18 percent of the U.S. drinking-water-supply sources that are tested on an annual basis, according to the Centers for Disease Control and Prevention (levels are typically below 30 parts per billion). It’s also a carcinogen.
  • Other industrial chemicals and metals: Polychlorinated biphenyls (PCBs) were used as coolants and insulators in electrical equipment. Although they’ve been banned for several decades, PCBs continue to exist in the environment because of their long half-life.

Welding work has been associated with a greater risk of PD, possibly due to manganese in fumes; exposure to other metals, such as iron and lead, is also believed to increase the risk of PD. And the exhaust fumes from road traffic has also been associated with an increased risk of the disease.

Parkinson’s Pathology

Unlike Alzheimer’s, the pathology of Parkinson’s is well understood. Parkinson’s and other parkinsonian syndromes stem from a loss or impairment of brain neurons that produce dopamine. Dopamine is a neurotransmitter and hormone that plays a role in myriad aspects of our behavior: It governs our thinking, planning, focusing, and striving, and it helps us coordinate our movements. It’s also involved in regulating our sleeping; controlling nausea and vomiting; and facilitating certain cardiovascular and kidney functions.

New research suggests that there may be several subtypes of PD: Some may be caused by pathologies in other brain regions involving nondopaminergic neurons as well.

For some people, Parkinson’s may even begin in the gut. As a study published in the Journal of Gastroenterology and Hepatology Open in 2020 explains, “It has been postulated that gut pathogens and dysbiosis can contribute to peripheral inflammatory states or trigger downstream metabolic effects that exacerbate the neurodegenerative process in PD.”

“Most PD cases likely have a multifactorial etiology, or causes, resulting from the combined effects of environmental and genetic factors,” explains David K. Simon, MD, PhD, a neurology professor at Harvard Medical School and director of the Parkinson’s Disease and Movement Disorders Center at Beth Israel Deaconess Medical Center, and other authors in a 2020 status report on Parkinson’s knowledge.

The decline in dopamine production leads to some of PD’s earliest and most visual symptoms affecting motor activities, which bring on tremors, stiffness, slowness of movement, and balance issues. For this reason Parkinson’s is often called a movement disorder.

But the disease also sparks what are known as “invisible” symptoms: depression, anxiety, apathy, issues with pain processing, memory problems, dementia, and even psychosis. Other nonmovement symptoms include autonomic dysfunction, including constipation, low blood pressure, sexual dysfunction, and more.

These nonmotor symptoms are “the hidden face of the disease” — and they are often overlooked, according to Indu Subramanian, MD, director of the VA Southwest Parkinson’s Disease Research, Education, and Clinical Centers and a clinical professor of neurology at University of California, Los Angeles. “Tremor doesn’t affect quality of life as much as depression or anxiety,” she says, calling for greater awareness of the intricacies of PD among both the public and her fellow doctors.

While multiple factors may be involved in PD’s pathology, the fallout from environmental pollution, industrial chemicals, and synthetic pesticides is clear, according to Dorsey: “People with the most exposure have higher rates of the disease than the general population.”

In recent years, several advances have helped physicians identify Parkinson’s. In 2019, a skin biopsy test became available that detects PD via a misfolded version of the alpha-synuclein protein  in patients’ skin. And in 2023, a biomarker that signals protein dysfunction was found that can help discern Parkinson’s disease in patients.

What causes the degeneration or death of the dopamine-producing brain cells in the first place?

Age-related changes in neurons certainly play a part. Neurons may degenerate as the result of oxidative stress, mitochondrial dysfunction, inflammation, and other causes. Lewy bodies, or abnormal clumps of proteins, may also block dopamine production and transmission. And research published in 2023 suggests that chronic brain inflammation or systematic inflammation or both may contribute to the disease. (Our bodies need inflammation to fight off infection, but too much of it for too long can spur a wide range of illnesses. Learning to manage it effectively is key. Learn more at “How Chronic Inflammation Affects Your Health.”)

While multiple factors may be involved in PD’s pathology, the fallout from environmental pollution, industrial chemicals, and synthetic pesticides is clear, according to Dorsey: “People with the most exposure have higher rates of the disease than the general population.”

PD is a lifelong and progressive disease, and symptoms slowly worsen over time. There currently is no known cure.

The disease itself is not fatal: PD won’t kill you, like a heart attack or stroke can. But it can lead to an increased risk of dying from things such as a fall due to motor issues; pneumonia from progressive problems with swallowing and aspiration; pressure ulcers from immobility; or infections.

As Clayton writes in his memoir, “Parkinson’s won’t kill me. But it’s a preparation for death. A rehearsal.”

Parkinson’s Medications and Treatments

“Although Parkinson’s is a progressive disorder, most people can still live long and productive lives,” says Dorsey. While Alzheimer’s sufferers lack medications that make a meaningful difference, Parkinson’s patients are fortunate to have a drug available that helps many people, called levodopa. Below is a survey of current — and some possible future — medications and treatments.

Medications
There is a range of medications to help with Parkinson’s motor symptoms, the most commonly prescribed being levodopa. The drug is absorbed through the intestine and the brain converts it to dopamine. The U.S. Food and Drug Administration (FDA) approved levodopa as a treatment for PD in 1970. And there are other medications, such as carbidopa, that can help support levodopa and alleviate its side effects.

For nonmotor symptoms, a range of medications, supplements, diet, and lifestyle choices can help. The Michael J. Fox Foundation offers a helpful guide at www.michaeljfox.org/medications-treatments. Talk to your healthcare provider for more personalized advice. (For more on natural supplements to boost your mental health, see “8 Key Supplements to Boost Your Mental Health — Naturally.”)

Deep Brain Stimulation
John Foley of Minneapolis was 65 when he was diagnosed with Parkinson’s, although his doctors believe he may have had it for some four years by that time. Soon after his diagnosis, Foley consulted with neurosurgeon Kendall Lee, MD, PhD, at the Mayo Clinic, and opted for deep brain stimulation surgery. DBS involves making small holes in the skull to embed electrodes into the brain. The procedure also includes implanting a pacemaker-like pulse generator under the skin in the chest that is later programmed to send continuous electrical signals to the brain.

In 2019, Johns Hopkins Medicine researchers found that “deep brain stimulation using electrical impulses jump-starts the nerve cells that produce the chemical messenger dopamine to reduce tremors and muscle rigidity that are the hallmark of Parkinson’s disease,” according to a study press release.

DBS is a complex and “potentially risky procedure,” the Mayo Clinic warns on its website. And it’s not right for all PD patients. Still, it may make a difference for some: “Deep brain stimulation won’t cure your condition, but it may help lessen your symptoms.”

For Foley, DBS has been life-changing. “I just returned from my baseline checkup, and I’m better today than I was two years ago,” he says. He has stopped taking PD medications and he holds his hands out to show that they no longer tremble.

After his PD diagnosis, Foley began doing something he’d never considered before: He started writing poetry. “I began writing poetry as a catharsis for dealing with the disease and treatments,” he explains in the introduction to his collection, No Turning Back, which includes artwork by Mary GrandPré, who illustrated the U.S. editions of the best-selling Harry Potter books.

The book is also his testament to the efficacy of DBS. As he writes in his poem “Aftermath”: “Behind the tremors, behind the verdict, it’s still me. / I’m not lost, just working on a new map.”

Focused Ultrasound
In 2018, the FDA approved MRI-guided focused ultrasound (MRgFUS, or sometimes simply FUS) as a noninvasive treatment that helps some Parkinson’s patients manage tremors. Ultrasound is guided by an MRI to the specific areas in the brain. The high-temperature ultrasound waves destroy brain cells that cause movement problems.

FUS is currently approved for use on only one side of a patient’s brain, so it helps with symptoms on only one side of the body. When done on both sides of the brain, FUS may cause speech, swallowing, or memory issues. Researchers are looking to perfect FUS for both sides of the brain.

Vaccination
Vaccines empower antibodies in the body’s immune system to fight off harmful agents, such as the viruses that cause polio or chicken pox. Vaccines can also be aimed at proteins, which may be the key to developing a PD vaccine: “This is convenient in the case of Parkinson’s because misfolded forms of the alpha-synuclein protein — that major factor in the disease — could be targeted,” explains Dorsey and his coauthors in Ending Parkinson’s Disease.

Vaccine studies began in 2017 and continue today.

Parkinson’s Therapies

In recent years, progressive new therapies are helping those with Parkinson’s like never before. Subramanian calls the new understanding of the benefits of exercise, diet, and social connection “game-changers.” Below is a survey of current therapies.

Exercise and Movement
The power of exercise for people with Parkinson’s disease is remarkable and represents one of the biggest advances over the past 20 years or so,” says movement scientist Gammon Earhart, PT, PhD, associate dean and director of the Program in Physical Therapy at Washington University School of Medicine in St. Louis. “To date, exercise remains the only approach that may modify disease progression.”

Volumes of studies and trials have validated the benefits of exercise as therapy for PD. And while most research focuses on a specific type of movement, in the end it appears that simply moving is the key.

“Exercise has positive effects on movement, mood, thinking, and quality of life, just to name a few.  And it is never too early, or too late, to start exercising.”

Exercise has positive effects on movement, mood, thinking, and quality of life, just to name a few,” Earhart explains. “And it is never too early, or too late, to start exercising.”

Earhart led trials on tango dancing as Parkinson’s therapy. “Tango has lots of features that enable people with PD to practice things, within the context of the dance, that are often challenging for them. For example, starting and stopping, moving at different speeds, walking backward, turning, and multitasking,” she says. “It is also a social activity that allows the person with PD and their partner or friend to participate on equal footing, which helps with engagement as well as motivation and desire to continue.”

PD therapy classes featuring tango and myriad other styles of dance — Zumba, ballet, and more, both in person and virtual, and in several languages — are offered around the country.

A recent long-term study in China on the effects of tai chi as PD therapy found numerous benefits. “Tai Chi training reduced the annual changes in the deterioration of the Unified Parkinson’s Disease Rating Scale and delayed the need for increasing antiparkinsonian therapies,” the authors note. “The annual increase in the levodopa equivalent daily dosage was significantly lower in the Tai Chi group [compared with a control group].”

Davis Phinney is a former professional bicycle racer who won an Olympic bronze medal as well as two Tour de France stage wins. In 2000 at age 40, he was diagnosed with early-onset PD. He cofounded the Davis Phinney Foundation for Parkinson’s with his wife, Connie Carpenter Phinney. One of its key programs is Pedaling for Parkinson’s, with in-person classes using stationary bicycles at YMCAs, community centers, and gyms across the country. The program also offers virtual classes.

“Participants who ride three days a week over eight weeks have shown improvement in their Parkinson’s-related symptoms by as much as 35 percent,” the group’s website states. “Exercise not only improves your general health, but it also has specific physical, mental, and emotional benefits as you live well with Parkinson’s.” (See “The Health Benefits of Cycling” for more about boosting your overall health with a bike ride.)

“The data that physical exercise is beneficial for people with PD is overwhelming,” says Simon, the Harvard Medical School neurology professor. “Some studies suggest more intense physical activity yields the most benefit, but other studies suggest substantial benefits from moderate-intensity exercise. The exact optimal amount is unclear, but generally we recommend aiming for at least 150 minutes per week of at least moderate-intensity exercise. However, even less than this recommended amount likely still has benefits.”

Exercise may even help prevent PD in the first place.

Exercise may even help prevent PD in the first place. Following the publication of a paper in Clinics in Geriatric Medicine on the status of Parkinson’s research, coauthor Tanner, of the Weill Institute for Neurosciences, predicted in the Washington Post that the 90,000 new Parkinson’s cases currently diagnosed annually among Americans age 65 or older could drop by nearly half by 2030 if everyone simply exercised more regularly and vigorously.

One of the next goals in PD treatment is to create guidelines for exercise prescriptions.

“We have long known exercise is good for Parkinson’s patients,” Giselle Petzinger, MD, associate professor of neurology at the University of Southern California’s Keck School of Medicine, tells the Post. “What we are trying to do now is further refine what we already know into practical applications for patients.”

(For more on how exercise benefits the brain, see “How Exercise Benefits the Brain.” And for advice on exercising safely with Parkinson’s, visit “Exercising Safely With Parkinson’s Disease.”)

Motor Skills and Speech Therapy
Lee Silverman was an individual with PD whose speech abilities were affected by the disease. This is a common occurrence, as published studies have found that some 70 to 90 percent of people with PD show some type of speech disorder during the course of the disease. Lorraine Ramig, PhD, now a research professor emeritus of speech, language, and hearing sciences at the University of Colorado Boulder, was called in to work with Silverman in 1987. The speech therapy Ramig and her colleagues developed was named in Silverman’s honor as Lee Silverman Voice Treatment (LSVT) LOUD.

LSVT LOUD retrains soft-talking individuals with PD to use their voice at a more conventional volume. “Key to the treatment is helping people ‘recalibrate’ their perceptions so they know how loud or soft they sound to other people and can feel comfortable using a stronger voice at a normal loudness level,” the group’s website explains.

The group subsequently launched LSVT BIG, offering therapy to recalibrate motor skills, including both small-motor tasks like buttoning a shirt and large-motor skills such as maintaining balance while walking.

LSVT has certified speech clinicians and physical and occupational therapists in its programs in 70 countries.

Nutrition and Psychobiotics
Diet is key to overall health, but certain “neuroprotective” foods may be especially beneficial to those with Parkinson’s. “In PD, there are some foods that may help to ease symptoms and help brain health, while others can affect the way medications work,” states the Parkinson’s Foundation website. “While there are many things about PD that cannot be changed, the informed choice of diet can help people to live better with the disease.”

The foundation offers the following advice:

  • Anti-inflammatory foods are important for brain and overall health. These include oily fish, like salmon, tuna, and mackerel; dark leafy green vegetables, like spinach, Swiss chard, kale, and collard greens; as well as soy products and herbs such as rosemary. Fats like medium-chain triglycerides may also tamp down inflammation: Coconut oil is a good source. (See “5 Rules for Anti-Inflammatory Eating” for more.)
  • Antioxidants in foods can also protect the brain. They fight free radical molecules that can damage neurons and other healthy cells. Purple and red fruits, like blueberries and raspberries, contain a group of antioxidants called anthocyanins, which, according to one study, can increase blood flow to and activate areas of the brain that control, memory, attention, and language. Studies also find that drinking green tea, which has the antioxidant-like catechin EGCG, has both anti-inflammatory and antioxidant effects.
  • Nuts and spices also offer strong neuroprotection. Nuts deliver healthy oils, essential fatty acids, minerals, vitamins, and antioxidants. Among the best are walnuts, pistachios, macadamia nuts, cashews, almonds, and Brazil nuts. Spices include turmeric (which offers the powerful anti-inflammatory curcumin) and Ceylon cinnamon, which in animal studies has shown potential for normalizing neurotransmitter levels and other PD brain changes. (Turmeric is a potent, anti-inflammatory spice with a wide range of promising therapeutic properties. See “The Health Benefits of Turmeric” for more on this healing spice.)

(For more on eating habits and nutrition to support your brain, see “Healthy-Brain Food.”)

The connection between Parkinson’s and the gut microbiome — the trillions of microbes in your intestines — is one of the newest, most innovative fields of PD research. More research is needed, and ongoing trials are looking at probiotics and prebiotics that may affect PD, including helping with side effects such as constipation.

Probiotics are living microorganisms found in fer­mented foods, such as yogurt, kimchi, and sauerkraut, and available in supplement form; they can help create and sustain a diverse microbiome, supporting the intestinal lining and enhancing nutrient absorption, which aids overall digestive health. Prebiotics are types of indigestible, fermentable fiber that help the growth of the beneficial bacteria.

Future therapy may include “psychobiotics” — a combination of beneficial bacteria that can influence your neurological health and mental well-being via the gut–brain axis. (For more on the power of your microbiome to heal and protect your brain, from neurologist David Perlmutter, MD, FACN, ABHIM, see “Healthy Gut, Healthy Brain.”)

Parkinson’s Trends

The prevalence of PD is growing so rapidly it seems difficult to track. A 2022 study by the Parkinson’s Foundation, the Michael J. Fox Foundation for Parkinson’s Research, and the Institute for Clinical Evaluative Sciences shows the incidence of Parkinson’s disease in the United States is about 50 percent higher than previous estimates: In 1978, 40,000 to 60,000 cases were reported annually; some 60,000 to 95,000 Americans are now newly diagnosed with PD each year.

The World Health Organization reported last year that PD’s prevalence around the globe has doubled in the past 25 years. The number of deaths caused by the disease in 2019 was twice the number reported in 2000.

Why the rate of Parkinson’s has grown so dramatically is a larger question. “The reasons for a greater incidence . . . remains to be explained, but could represent either improved ascertainment and clinical recognition of PD or reflect the impact of risk factors for PD,” explain the authors of the 2022 study, published in the journal npj Parkinson’s Disease.

The Parkinson’s Foundation estimates that the combined direct and indirect cost of PD, including treatment, social security payments, and lost income, is currently nearly $52 billion per year in the United States alone. And it’s projected to surpass $79 billion by 2037.

As the incidences increase, so do the economic costs of the disease. The Parkinson’s Foundation estimates that the combined direct and indirect cost of PD, including treatment, social security payments, and lost income, is currently nearly $52 billion per year in the United States alone. And it’s projected to surpass $79 billion by 2037.

There are other, hidden costs as well. Most people with PD are looked after by informal caregivers such as spouses, adult children, friends, or other nonpaid individuals, according to a study published in the Journal of Neurology in 2023. Looking at five European countries plus Japan and the United States, the authors found that 70.4 percent of caregivers were spouses and 71.6 percent were female. The average caregiver age was 62.6 years old, and they had been caring for the person with PD for an average of 4.6 years.

The authors warn of an impending crisis. As the prevalence of PD increases over the next 20 years, a greater burden will fall on healthcare systems and caregivers.

Early-Onset Parkinson’s

Actor Michael J. Fox was just 29 in 1990 when he first noticed a tremor in his pinkie. The trembling wouldn’t stop: It was like his littlest finger was possessed. After rounds of tests and doctor’s visits, he was diagnosed with Parkinson’s, although he didn’t share this with the world for seven more years. In his 2002 memoir, he writes on the first page not of his stellar television and movie career but about PD.

The title of Fox’s autobiography? Lucky Man.

In interviews after revealing his diagnosis, Fox referred to his PD as a “gift” — an epithet that did not please others with the disease. As he clarifies in his book, “If it is a gift, it’s the gift that just keeps on taking.”

Instead, the gift Fox was describing was the personal journey Parkinson’s led him on.

“These last 10 years of coming to terms with my disease would turn out to be the best 10 years of my life — not in spite of my illness, but because of it,” he writes.

“Coping with the relentless assault and the accumulating damage is not easy. Nobody would ever choose to have this visited upon them. Still, this unexpected crisis forced a fundamental life decision: adopt a siege mentality — or embark upon a journey. Whatever it was — courage? acceptance? wisdom? — that finally allowed me to go down the second road (after spending a few disastrous years on the first) was unquestionably a gift — and absent this neurophysiological catastrophe, I would never have opened it, or been so profoundly enriched. That’s why I consider myself a lucky man.”

In the years since revealing his diagnosis, Fox used his celebrity status to make himself the face of PD. And in 2000 he launched the Michael J. Fox Foundation for Parkinson’s Research, which remains one of the primary organizations worldwide dedicated to ensuring the development of improved therapies for those living with PD — and to ultimately finding a cure for the disease.

Age may be a key risk factor for Parkinson’s, but it is not just an elderly person’s disease, as Fox’s story shows. An estimated 4 percent of people with PD are diagnosed before age 50.

Women and Parkinson’s

In the United States, men are between one and a half to two times as likely to get PD than women. But Parkinson’s is in no way an affliction of just older men. In fact, 40 percent of those worldwide with the disease are female, says Indu Subramanian, MD, director of the VA Southwest Parkinson’s Disease Research, Education, and Clinical Centers and a clinical professor of neurology at University of California, Los Angeles. And in Asia, the ratio is equal.

“People think of this white older man who’s bent over with a cane — and that is the picture that has been propagated time and time again,” says Subramanian. And she warns that doctors may even overlook classic PD symptoms if they present in young people, women, BIPOC, or members of the LGBQTIA+ community.

Subramanian and her coauthors outlined such disparities in diagnosis and treatment in a report published in 2022 in the journal Movement Disorders, entitled “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies.”

“There’s a huge gap in advocacy as well as research,” she explains. “You look at trials: Most of them are of white, affluent men whose wives bring them in for study visits.” In fact, clinical trials haven’t always needed to collect or report data on biological sex. It was only in 2016 that the NIH began requiring researchers with NIH funding to report results by sex, which means it can be impossible to know who was involved in certain studies conducted before that. Then, Subramanian adds, trials data is extrapolated to others in a “cookie-cutter approach.”

Women may endure a faster progression of the disease and a higher mortality rate. Many women have less body weight than men and metabolize PD drugs differently. Women’s symptoms can differ and present differently as well.

Women may endure a faster progression of the disease and a higher mortality rate. Many women have less body weight than men and metabolize PD drugs differently, Subramanian says. Women’s symptoms can differ and present differently as well.

“One of the things that is often not said is that women who get Parkinson’s disease often have shame about their diagnosis,” she notes. “They have a huge stigma about having the disease and they feel that it might have been something that they did; they don’t want to tell people. They have low self-esteem since much of what determines their own sense of self is their ability to be a caregiver for others such as their children, grandchildren, or husbands.”

She calls for a “rebranding” of Parkinson’s because it affects “everyone across the globe — no one is spared.”

Ending Parkinson’s

In their book Ending Parkinson’s Disease, four leading experts — Ray Dorsey, MD; Todd Sherer, PhD; Michael Okun, MD; and Bastiaan Bloem, MD, PhD — offer a prescription for curtailing the disease. Their action plan is summarized in the acronym PACT.

Prevent:

  • Ban herbicides and pesticides like paraquat and solvents like trichloroethylene. Reduce your risk of exposure if you work with such chemicals by wearing masks, gloves, and protective clothing. Accelerate the cleanup of contaminated sites.
  • Eat healthy. Buy organic when possible and avoid foods that may be contaminated with herbicides and pesticides. Wash your produce thoroughly. Eat a Mediterranean or similar low-carb, plant-based diet.
  • Drink clean water. Test your water and use water filters to reduce exposure to chemical contaminants.
  • Exercise. There is no exact optimal amount of exercise, but David K. Simon, MD, PhD, a neurology professor at Harvard Medical School and director of the Parkinson’s Disease and Movement Disorders Center at Beth Israel Deaconess Medical Center (who was not involved with the book), generally recommends at least 150 minutes per week of at least moderate-intensity exercise. Still, even less than this recommended amount likely has benefits, he says.
  • Protect your head. Avoid activities with a high risk of concussion or wear a protective helmet.

Advocate:

  • Share your story: Attend a Parkinson’s support group in person or online.
  • Call your government representatives and push for more research funding via the National Institutes of Health.
  • Donate to Parkinson’s foundations and stay informed.

Care:

  • Get the care you want and need by going to a medical center that specializes in Parkinson’s.
  • Advocate for training of more specialists and clinicians in PD care.
  • Expand access to care. Ask your government representatives to request ongoing Medicare coverage of telemedicine so Parkinson’s care is available to more patients.

Treat:

  • Consider genetic testing to assess your family history regarding Parkinson’s.
  • Join a clinical study. As Jim Hunt, who has Parkinson’s, explained during a break in a Rock Steady Boxing class, “I’m a research subject volunteer. It’s not going to help me, but it may help the next generation.”

About John Foley 

John Foley of Minneapolis was 65 when he was diagnosed with Parkinson’s. Following his diagnosis, he began writing poetry as a catharsis for dealing with the disease and treatments. His collection, No Turning Back, included artwork by Mary GrandPré, who illustrated the U.S. editions of the best-selling Harry Potter books.

Illustration by Mary GrandPré
Michael
Michael Dregni

Michael Dregni is an Experience Life deputy editor.

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