Reclaiming Control in the Face of Parkinson’s
The first time I met Joe was in an empty chapel in Palo Alto, Calif. I’d come there because one of his students, a friend of mine, told me he was a medical mystery. A 77-year-old Parkinson’s patient who’d had the disease for at least 11 years but, with only a small dose of medication (carbidopa-levidopa), was able to drastically improve his motor skills and quality of life beyond what even his physicians could believe. He was now teaching Qigong and Tai Chi in the community on Wednesday afternoons in a spacious, wooden room in a church on Cowper Street.
The chapel had no pews, only a single carpet in the center. Joe, the only other person in the room, stood on the border between concrete and carpet, with a walker. Today, no other students showed up; it would just be Joe and me. Joe had been diagnosed with Parkinson’s disease (or as his neurologist Helen Brontë-Stewart calls it, PD), a neurodegenerative disorder that correlates with depletion of dopaminergic neurons in the central nervous system, resulting in slow movement, rigidity, tremors and postural instability.
He is among nearly one million Americans who will be diagnosed with Parkinson’s by 2020. Parkinson’s affects both motor skills, leaving patients shuffling when they walk, and cognitive skills. Unlike the other 40–50 percent of people with PD, Joe is not suffering from clinically significant depressive disturbances. His fine motor skills have not deteriorated to the point of a severe loss of independence and control of his own body, leading to a loss of dignity, a progression that can be daunting for many.
Joe was first diagnosed with Parkinson’s 11 years ago, in 2008, because one of his Qigong teachers suggested that he should see a neurologist. He had fallen flat on his face several times. He had trouble dialing the phone, and he knew it. When he visited a neurologist’s office, the first physician said, “I am happy to tell you that you have an incurable disease!” The physician presumably meant to say, “I am happy to tell you we have a diagnosis. Unfortunately, it’s an uncurable disease,” but the words had come out too quickly. Joe, of course, was shocked. The physician never apologized for the impact of his language, but his language prevented Joe from further medical inquiry for some months.
Joe put himself under the care of another physician, one who remains his current neurologist. Brontë-Stewart, PD specialist and renowned Stanford researcher on movement disorders, came into the profession from her experience as a former ballet dancer interested in how bodies can understand what we ask of them. She placed him on medication to manage his progressive symptoms like tremors and falls. The medicine, levodopa and carbidopa, replaces the dopamine no longer provided by the dopaminergic neurons. But after half a year of monitoring Joe, she realized something about him was different. Joe remembers her saying to him, “Of all of the people I know who have Parkinson’s, you handle it better than anyone else I know, besides only one other person—a 30-year yoga practitioner.”
I had come to see in what ways Joe was different. Joe welcomed me to his class. I walked onto the carpet, shoes off. Joe turned towards the wall to park his walker, knees rolling slightly in and out in a tremor, and his hands quivered as he set the walker down.
We began the Qigong lesson by moving into the first standing pose. Qigong, a moving meditation originally from China, integrates body posture, movement and meditation. It might work to help Joe with his symptoms because his focused attention on his body allows him to still the body. Eastern medicine calls it Qi or Chi (life force); Western medicine’s full understanding of its biological mechanism is still unclear.
I began to mirror Joe’s stance, knees slightly bent, spine tucked under. The deeper we got into the standing posture, the more I noticed Joe’s tremors subside. Within only a few minutes, the tremors had completely dissipated. His entire body opened and closed with his breath, and his movements calmed. I was in awe at the transformation.
I asked Brontë-Stewart what the possible mechanism could be for Joe’s transformation. She remembers 20 years ago, “when I first prescribed exercise, my colleagues thought I was nuts.” They teased her that she was prescribing yoga all day long. But in 2006 the American Academy of Neurology changed their guidelines based on evidence, recognizing exercise as neuroprotective.
These days, exercise, according to Brontë-Stewart, “is the buzz word.” Exercise has been shown in over 20 studies in both mouse and human models to reduce neurodegeneration and neuroinflammation while increasing the growth and connections of new neurons. Particularly for neurodegenerative disorders like Parkinson’s, exercise can help reverse the disease process, Joe being a vivid example of how powerful exercise and movement practices can be.
For her patients, Brontë-Stewart doesn’t care what type of exercise they do, as long as they enjoy it and feel in touch with their bodies. She prescribes yoga, Tai Chi, tango, boxing, cycling and many other forms of exercise. She says that the most important question for patients is “how do you feel your own body?” She sends many of her patients to a Rock Steady boxing class where she said, “they feel like they can finally do something, and their sense of self is much better.”
Even with Tai Chi, patients, she said, “get a sense of having a beautiful way of moving again.” Especially in light of a shifting body image, this was a powerful feeling for Joe, the feeling of connectedness with his own body, its movement in space, and the flow of life force within his body.
Randomized control trials show that tapping into the mind-body connection via physical exercise rehabilitation programs drastically improve quality of life and motor outcomes for patients with Parkinson’s, even leading to Harvard Medical School opening up a 12-week Tai Chi program for Parkinson’s. In 2016, Brontë-Stewart worked with the architect of the Stanford neurosciences building to include a dance studio for PD patients, now one of the most lively spaces that not only encourage movement but provides a sense of community. Meanwhile, Dance for PD under Mark Morrison’s Dance Group, has opened classes in over 25 countries in the world.
While exercise has been shown to help the motor aspects of Parkinson’s, some of the next questions for Parkinson’s involve the nonmotor symptoms. This is what Joe cares about. Neurologist Kathleen Poston, Stanford researcher on the cognitive and memory problems in people with Parkinson’s, recognizes that beyond the physical impairment, “much of the emotional stress on a person comes from increasing cognitive difficulties and dementia.”
According to Poston, exercise may also contribute to slowing the progression of nonmotor symptoms, though studies have only included nonmotor symptoms as secondary outcomes, “those [results] of which are still questionable.” Her research focuses on the nonmotor symptoms as the primary outcomes. While we know that the mind-body connection is important, the full pathophysiological understanding of PD is still unclear: “We need to push.”
For Joe, Qigong and Tai Chi have served a profound role in his life for managing both motor and cognitive aspects of PD. When he is not teaching classes or handling the details of his life, he spends his time reading up on the literature, as noted by his stack of neuroscience, sleep medicine, and Chinese medicine books on top of the chapel piano. I asked Joe, “What can you teach doctors about how to best care for patients when there’s not always a cure?” He replied with confidence, “We change what we believe depending on the evidence. If we could all soften our belief systems and be humble about what we believe … because in the end, healing is a one-to-one project.”