Fighting Back Against Parkinson’s - Pacific Standard

Fighting Back Against Parkinson’s

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Individuals struggling with the mysterious, debilitating disease are finding relief in an unlikely place: the boxing gym, where patients battling uncontrollable tremors are transformed into fighters.

By Tovin Lapan

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(Illustration: Oliver Barrett/We Are Mystery Box)

Through the strain on Kevin Krejci’s bespectacled, reddening face, a flicker of a smile flashes as glove hits canvas, a spray of sweat punctuating every hit to the heavy bag. There is joy and fury in every swing. Pummeling the bag soothes his stress and frustration. Emotional and physical relief comes with each blow.

Thwack! Thwack-thwack! A jab-jab-cross combination pecks the bag as the trainer patrols the line, offering pointers. “Keep your hands up!” she yells. “Turn your hips!”

Krejci is in a group of boxers that includes women, septuagenarians, and every weight class from fly to heavy. They are all training to fight the same opponent.

The bell rings after a three-minute round, and the fighters circle around Kim Woolley. It is here, in the quiet of taking instruction from their trainer, where the signs of disease are easier to spot. Krejci’s left arm hangs stiffly at his side as he walks over. Another boxer’s right hand trembles as he listens. Some have a pronounced hunch, their spines curving just below their shoulders, while others speak haltingly. They all have Parkinson’s disease.

“I love hitting the heavy bag. I feel like it’s such a stress relief, and I think the symptoms are often brought on by stress,” Krejci says as he unwinds his yellow hand wraps at the end of another session. “I started seeing noticeable improvements after about three months. My stiffness and walking improved.”

Krejci, the father of two young boys, received his diagnosis three years ago, when he was 48, and he immediately wondered what the implications were for his family and future.

“Looking back, I probably had symptoms for 10 years, but I ignored them,” he says. “All of the signs were there but I didn’t take my health seriously enough.”

The diagnosis shocked Krejci into action. He vowed to be an active participant in his treatment, and do all he could to hold the developing symptoms at bay. He was the first to sign up when Rock Steady Boxing, a non-contact training program designed for Parkinson’s patients, launched a chapter in San Francisco a year after his diagnosis. Krejci joined a growing movement of Parkinson’s patients bucking outdated exercise recommendations. New programs that push Parkinson’s patients to be more active and improve their fitness are popping up around the country and growing steadily. Besides boxing, the new movement therapies incorporate dance, drumming, golf, and tai chi.

Not only is some physical therapy not as helpful as previously thought, vigorous, sweaty exercise, which some patients were previously instructed to avoid, can relieve symptoms and perhaps even slow the disease’s progression. Now, Parkinson’s specialists are advocating a shift in therapy guidelines to help patients work toward increasingly intense physical exercise.

Losing Yourself

Parkinson’s is the cat burglar of ailments, disturbingly effective at pilfering precious possessions through mysterious methods. Approximately one million people in the United States are living with the degenerative disease, and it sneaks up on many of them with initially mild, easily ignored symptoms. It robs them of balance, coordination, speech, and, later on, memories and the most basic, previously routine functions.

The cause is unknown, but scientists know it kills off neurons in the substantia nigra, the portion of the brain managing dopamine production, which is needed to control the body���s nerves and muscles. By the time most people are diagnosed, the disease has already disposed of 80 percent of these neurons.

A common treatment for Parkinson’s is a class of drugs that help produce dopamine, but after years of use they can cause dyskinesia — involuntary muscle movements. Another treatment, deep brain stimulation, involves a surgical implant in the chest that sends electrical pulses to the brain. Physical therapy is typically prescribed for specific symptoms such as hand tremors.

“Parkinson’s is the cat burglar of ailments, disturbingly effective at pilfering precious possessions through mysterious methods. Approximately one million people in the U.S. are living with the disease, and it sneaks up on them with initially mild, easily ignored symptoms.”

Patients are condemned to a slow deterioration of their bodies and minds, but never know which of the myriad symptoms will strike.

“People with Parkinson’s disease lose a sense of who they are,” says Joyce Johnson, executive director of Rock Steady Boxing. “The tremors and symptoms aren’t who they used to be. They may no longer have control of their appearance, speech, swallowing — even their facial expressions.”

Krejci, confronted with such a confounding disease, did not want to be a passive observer to his own physical and mental decline. “When I was first diagnosed I went to the World Parkinson Congress,” he says. “It was very sobering, both depressing and inspiring at the same time, because you see people at different stages and you share notes. You also see that people are trying all types of therapies and treatments.”

At the conference, Krejci was inspired by a talk from “e-Patient Dave,” a kidney-cancer patient given six months to live in 2007 who beat the disease and became a well-known advocate of patient engagement and personal health data. Krejci already tracked his sleep, but post-diagnosis he became a devotee of the quantified-self movement, tracking his heart rate, moods, activity, and other metrics.

“There has not been a lot of focus on simply improving quality of life,” Johnson says. “All of the money is spent on researching a cure or the cause, and very little money is spent on programs that help people with Parkinson’s live better lives. Even if they find a cure, it will be another 20 years before they approve it for the general public. We need ways to fight back against the symptoms.”

Brain Fertilizer

The stories of Rock Steady boxers tend to have a common prologue: Upon diagnosis they muster their positive side and vow to resist the disease head-on via exercise and fitness, only for their doctors to demur.

Nearly all of the Parkinson’s patients interviewed for this story say their initial doctors never mentioned exercise as part of their therapy. Fighters in the Rock Steady Boxing class say their physicians worried about falls and injuries, and several of them, including Krejci, switched doctors in order to work with one that supported their fitness goals. After decades of research, though, those attitudes have begun to change.

“Twenty years ago they told people with Parkinson’s it’s progressive, not to expect to get better, and gave them a walker,” says Stephanie Combs-Miller, a professor of physical therapy at the University of Indianapolis. “Even 10 years ago the benefits of exercise were not as clear, and the research just wasn’t there yet. But the knowledge has increased five- or 10-fold; it’s amazing how far we’ve come.”

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Left: Hitting the bags. (Photo: Rock Steady Boxing) | Right: The fighters gather for a meeting. (Photo: Rock Steady Boxing)

In 2003, Parkinson’s researcher Jay Alberts participated in a long-distance Parkinson’s-awareness tandem bike ride with a patient who reported some of her symptoms improved or disappeared altogether during the trip. Intrigued, Alberts, who works at the Cleveland Clinic, launched a trial in which Parkinson’s sufferers climbed on stationary tandem bikes with healthy riders who pushed the pace. This “forced exercise” had already been shown to produce increased neuroprotective effects in animals over exercise performed at a self-selected pace. Alberts’ work, published in 2011 in the American College of Sports Medicine’s Exercise and Sport Sciences Reviews and presented at the 2012 annual meeting of the Radiological Society of North America, showed Parkinson’s patients who did the forced exercise exhibited better motor control and other lasting improvements.

Combs-Miller started researching Rock Steady Boxing classes nine years ago. She has found those in the non-contact program maintain higher levels of balance, flexibility, and overall enjoyment of life than those in other forms of community exercise.

Scientists say any vigorous, sweaty, heart-pumping exercise can have these positive effects. Combs-Miller believes boxing, a total-body workout with both cardiovascular and strength training, provides particularly comprehensive benefits. And Rock Steady Boxing includes elements specifically designed for Parkinson’s, such as talking out loud to the group to help with speech problems.

“There is a certain social community aspect as well,” Krejci says. “It’s not quite forced exercise, but because the trainers and the fellow boxers motivate you, you do more than you would otherwise.”

One woman with a newborn had too much hand pain to fold her infant’s small clothing, but now does the laundry without issue. One 69-year-old fighter hiked 72 miles on the Continental Divide Trail.

There are, of course, limitations. The boxing classes are strictly non-contact. Every fighter gets a 90-minute evaluation to determine their level of fitness and function, and those with the worst symptoms are assigned a “cornerman,” a friend, caregiver, or family member who guards against falls and injuries.

Parkinson’s patients, specialists in the field, and therapists are in agreement that, in general, the medical community is just starting to pick up on the new research and support more robust exercise programs. Combs-Miller says movement-disorder neurologists, who see Parkinson’s cases regularly, have mostly caught up to the literature and are pushing exercise, but there is still a lag among family physicians and general neurologists.

“When a Parkinson’s diagnosis is given, along with the meds they need to be told that exercise is as important as taking the medication,” Combs-Miller says. “We know people do better if they regularly exercise.”

Krejci found that boxing even helps with fine motor movements. He has, for instance, doubled his typing speed since joining Rock Steady Boxing, and also improved his speech, walking, and stiffness.

“My physical therapist told me I could stop coming to treatments because boxing was doing so much for me,” Krejci says. “Now I just check in once a year with them.”

Yet initiating an aerobic exercise program is still not among the general guidelines for physical therapists treating Parkinson’s patients, according to Dr. J. Eric Ahlskog, a neurologist at the Mayo Clinic and author of The New Parkinson’s Disease Treatment Book: Partnering With Your Doctor to Get the Most From Your Medications.

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A version of this story first appeared in the

September/October 2016 issue

of Pacific Standard.

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“My view is that vigorous exercise may slow the progression of Parkinson’s disease by a direct effect on the brain,” Ahlskog says. “Exercise increases synaptic connections, reduces the normal attrition of brain circuits, and appears to liberate neurotrophic factors, among many other favorable brain influences. Within the brain, these trophic factors are like putting fertilizer on your lawn.”

Additionally, a large-scale study from England’s University of Birmingham published in JAMA Neurology in March found general low-dose physiotherapy and occupational therapy is not as helpful for mild to moderate Parkinson’s sufferers as previously believed. A total of 762 patients from across the United Kingdom were recruited for the randomized controlled trial of routine physical therapy that lasted for more than a year; no meaningful benefits were documented. While targeted physiotherapy for specific symptoms can be beneficial, this paper suggests non-targeted therapy has little impact on quality of life.

Ahlskog noted that, among people with Parkinson’s disease, “physical therapy referrals should target specific problems that are likely to benefit, such as inability to initiate walking (i.e., gait freezing).” He also added that “physical therapy practices should begin to incorporate facilitation of ongoing aerobic exercise and fitness.”

Considerably more research is needed to determine the most beneficial practices, Parkinson’s experts generally agree — specifically, well-constructed, longitudinal studies over several years that track the progression of the disease and closely monitor exercise programs.

For the boxers, the changes in their lives are all the proof they need. One woman with a newborn had too much hand pain to fold her infant’s small clothing, but now does the laundry without issue. One 69-year-old fighter hiked 72 miles on the Continental Divide Trail.

For Krejci, boxing has given him more time to hike and play beach soccer with his wife and two young sons, and it means he is holding on to his goal of being able to pick up his grandchildren someday.

“I love boxing so much, when I get there I just give it my all. I can hear the Rocky theme playing in my head,” Krejci says. “I’d love to see the day when they prescribe boxing as if it were medicine.”

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