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Moving On with Parkinson’s

Of the 1.5 million Americans with Parkinson's disease, up to 225,000 are under the age of 50. Whatever your age, if you're in the early stages of the disease, yoga may slow its progression and help you lead a full life.

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Seven years ago, I was sitting in a neurologist’s office with my husband awaiting the results of an MRI brain scan. I had suspected that the symptoms I’d been having—months of stiffness in my left arm and hand—meant that I might have carpal tunnel syndrome or a pinched nerve, and I was nervous. Turning to the security and comfort of my longtime yoga practice, I put my body and mind into a meditative state. I silently chanted Om and imagined a serene seascape far from the sterile room. A few moments later, my doctor announced the results: “You have Parkinson’s disease.” I did not register anything else she said. All I could hear was the word “Parkinson’s” rolling over and over like a crashing wave.

I glanced at David—my partner of 36 years—who’s usually cheerful and stoic. He looked as shaken as someone who had been tossed out of a moving car. We stumbled out of the office in disbelief. “This has to be a hideous mistake,” I said to him.

There was no way I could have a disease that, in my mind, targeted frail 95-year-olds. Wasn’t it obvious to this doctor that I was an active woman in my 50s with boundless energy, a thriving career, and a wonderful marriage? Didn’t she know that I couldn’t possibly have a chronic degenerative illness that would usher me into an entirely new—and unwelcome—stage of life? To show her how wrong she was, I made an appointment with another neurologist. But his diagnosis was the same. And months later, when a third specialist rendered the same verdict, I had no choice but to finally pay attention.

Having embraced denial like a life preserver, I threw it overboard in exchange for the tool needed to meet this challenge—knowledge. The more I learned, however, the more overwhelmed I became at the thought of losing my mobility and day-to-day life as I knew it. I needed to find a way to cope with the changes ahead of me, so, once again, I turned to yoga, which I had been studying for the previous 10 years. Today, seven years into this battle against the relentless progression of Parkinson’s, yoga has become my constant companion and, as it turns out, a new kind of lifesaver.

Getting to Know Parkinson’s

My first order of business was to investigate Parkinson’s disease, or PD, the ill-mannered houseguest who had shown up at my doorstep. I did not like this intruder but knew that, having no choice in the matter, I had better respect and learn from it.

Setting forth on my quest, I quickly found out how ignorant I had been about PD. I was amazed to discover not only that was I not too young to get Parkinson’s but that I was at a typical age for the diagnosis. According to Dr. Jill Marjama-Lyons, the author of What Your Doctor May Not Tell You About Parkinson’s Disease, PD’s incidence of onset peaks between the ages of 55 and 60. Up to 225,000 Americans under 50 have been diagnosed with what is called “young onset” Parkinson’s. Although high-profile celebrities with the disease—such as Michael J. Fox, Muhammad Ali, and Janet Reno—all have noticeable tremors, that is not the only telling symptom. While I didn’t have a tremor, there are plenty of other ways the disease first makes itself known, such as the stiffness I experienced.

Whatever the early symptoms, PD is a degenerative disease characterized by a loss of dopamine-producing nerve cells in the substantia nigra region of the brain. Dopamine is the chemical responsible for coordinating muscles and quick, smooth movements. For reasons that aren’t clearly understood, a person with Parkinson’s loses these cells and produces insufficient amounts of dopamine for normal motor control. An estimated 1.5 million Americans have PD, and about 60,000 new cases are diagnosed each year, according to the National Parkinson Foundation. Unfortunately, by the time a problem is noticed, most people are producing only about 20 percent of the dopamine they normally would.

It’s easy to confuse the warning signs—most commonly stiffness in the trunk and limbs, tremors, slowness of movement, and trouble with balance and posture—with those of other conditions: carpal tunnel syndrome, arthritis, or even a stroke. At a recent family gathering in Florida, for example, my family and I were convinced that my 89-year-old mother, who was slurring her words and losing her balance, had suffered a slight stroke. No one was more surprised than I to discover that she, too, had PD.

Degeneration in Parkinson’s patients is usually tracked over five stages. Very often a spouse or a friend will notice that you’re taking smaller steps or you’re having a problem with balance; other clues are a softening of the voice and tremors on one side of the body. By the second stage, symptoms begin to affect both sides, and day-to-day tasks become more difficult. After stage three, people lose the ability to walk straight or to stand. Tremors and severe immobility take over motor control at the fourth stage, when assisted-living care usually becomes necessary. At the final stage, a person may not be able to walk or stand, and one-on-one nursing care is then required.

Although no one knows what causes PD, there is some evidence that a person’s risk of developing the disease can be attributed to genetics and possibly to exposure to pesticides. There is no known cure, and symptoms only worsen over the years as the brain produces less and less dopamine. It soon became clear to me that there’s no going back once a person is in the early stages of PD, but I wasn’t willing to give up and not try to apply brakes to the progression.

Taking Action

Early on, I was put on a slew of dopamine boosters, including Stalevo 50. The drawbacks of these drugs are numerous, but they allow me to continue everyday activities like meeting with my book club and going to yoga class. Unfortunately, the effects of these medications can wear off unexpectedly. One morning last spring, I got up to start making breakfast and found that I could not walk. I was terrified, thinking that my Parkinson’s had gone from stage one to stage four overnight. I panicked and called out to David, who was working in his study. Because I go to a specialist out of state, it took more than an hour to drive to the doctor’s. During that long, frightening ride, I pictured myself trapped in a wheelchair, never able to dance, hike, or do yoga again. This was too soon, I thought. I wasn’t ready for this.

It turns out that I was experiencing a normal “off” in my medication and that everything would be working again shortly. This on-off effect, as it’s called, inhibits my days, making a shopping trip nearly impossible because I don’t know if the pills might fail me. I often feel like Cinderella, worrying that if I don’t catch my coach to get home in time, I’ll be left in rags, carrying a pumpkin.

In addition to prescription drugs, treatment for early-stage Parkinson’s begins with a call for regular exercise, which helps with stiffness and encourages mobility. Early on, my doctors prescribed a strong yoga practice and meditation in addition to daily medication. It’s unclear how many other specialists recommend yoga to their patients, but in 2002, a study performed at the John F. Kennedy Institute in Denmark recorded a 65 percent short-term increase in dopamine levels during restorative yoga and meditation in the test group. Today, researchers at the University of Virginia and Kansas University are testing the physical benefits of yoga in people with PD.

“We need more studies to determine the most effective type of yoga for people with Parkinson’s and at what dosage,” says Becky Farley, a physical therapist and research assistant professor at the University of Arizona. “However, I’ve seen what happens when people with PD embrace yoga…It [induces] relaxation, which helps control tremors, activates affected muscle groups, and can be a steady reminder of where your body should be and how it should move.”

In her own research, Farley found that certain exercises that target the torso and trunk can help prevent rigidity and maintain normal walking and a sense of balance. Stiffness in the body’s core is one of the most debilitating symptoms of PD because it hampers a person’s ability to walk across a room or simply stand upright. Restorative twists and poses that strengthen the trunk are thought to reduce stiffness and improve mobility. And they give me the energy I need to counteract insomnia (a nasty side effect of the medication I take) and the lethargy that Parkinson’s brings on.

The instructions a yoga teacher gives in class, of course, build awareness by getting you to concentrate on the details of the poses. But they also focus the mind and therefore bring you to the present. They ask you to tune in to subtle movements of your body. For someone with Parkinson’s, this is particularly helpful. As dopamine levels decrease, it’s also common to become less and less aware of the motor control that you’re losing. My body perception had become so distorted that I didn’t even realize that I was taking smaller steps and not swinging my left arm until David pointed it out to me. But the mind-body awareness that yoga encourages helps me self-correct and compensate for these new impairments.

A Little Support

The stereotype is that people with Parkinson’s are somehow resigned to a life defined by tremors and doctor’s visits. Before my diagnosis, I suppose I felt the same way. Depression and isolation are common results of the disease, but finding a community to help you cope can make a huge difference. I found mine in a Parkinson’s support group, family and friends, and yoga classes.

In 2005, a pilot study conducted at Cornell University placed 15 people with Parkinson’s in 10 weeklong yoga programs, after which participants reported less trunk stiffness, better sleep, and a general feeling of well-being. “A surprising side effect was the social support the class provided,” says neurologist Claire Henchcliffe, director of the Parkinson’s Disease and Movement Disorders Institute at Weill Cornell. “I think a lot hinges on sharing problems that doctors simply don’t have firsthand experience with. At a support group, people get great firsthand information and become proactive.”

I knew all of this—and more—from my twice-weekly hourlong yoga classes with Kripalu-trained Barbara Gage. We begin our sessions with a chant, then move into a short series of warm-up poses, and then lie in Savasana, while Gage leads meditation. As we move through the rest of the asanas, amazingly, my stiff body starts to feel like a young willow tree swaying in the wind. During Uttanasana (Standing Forward Bend), for instance, I feel a gentle stretch, and my lower back seems to open up. Virabhadrasana II (Warrior II)makes me feel grounded, calm, and even brave. The class comes to an end with the words “I am relaxed and alert; I am at peace” and Jai Bhagwan (“I bow to the Divine in you”).

Sometimes during the meditations and poses, I get back in touch with the playful, childlike part of myself that had become lost in the serious, grown-up world of coping with Parkinson’s. I love the words “the Divine in you” and have discovered during these moments of reflection that my divine, authentic self is whimsical, quirky, and fun.

One day I got inspired to install a stylish art deco bathroom in my home. Another time I organized a Nancy Drew costume party for my friend Val. The evening of the party, I donned my schoolgirl costume and was transformed into a healthy 17-year-old detective. Parkinson’s disease was not invited to the party.

Practice Acceptance

I often leave yoga feeling as majestic and empowered as the Lion Pose we do during class. My stiff left arm usually feels more limber, and my shoulders and back are free of the tension they tend to carry. And the energy crises I experience, caused by the PD-induced insomnia and drugs, may be doubly relieved, leaving me not only with an energy boost but also with better sleep, which in turn steadies my mood and makes me feel more confident.

Sam Erwin, coordinator of the American Parkinson Disease Association in Iowa, also grapples with PD. “For me, yoga is much more than exercise,” she says. “It’s a way of life. And my breath, which is an essential part of yoga, is always reminding me to slow down—an important thing for people with PD.”

Most of the evidence showing that yoga is beneficial in slowing down the disease’s progression is, for now, anecdotal and comes from yoga instructors, people with Parkinson’s disease, and physical therapists. “The people with PD who take my class seem to move better and enjoy a better quality of life,” says Lori Newell, a yoga teacher and the author of The Book of Exercise and Yoga for Those with Parkinson’s Disease. “Family members, too, will tell me that their spouse is walking better or getting out of chairs more easily than before.”

This is all encouraging news. Today, most people don’t understand when I tell them I have Parkinson’s—they think I don’t look like a typical patient. The truth is that I go out into the world only when my medicine is working full blast and I am moving really well. I have an excellent doctor and take medications that put dopamine back into my body, but moving fairly easily and enjoying a high quality of life are outcomes I attribute to yoga.

The practice is good medicine and confers its power over PD in less visible ways, too. One such intervention is yoga’s teaching of self-acceptance, which comes in Tadasana(Mountain Pose). And while practicing Vrksasana helps with balance, of course, imagining myself as a tree can also awaken a deep sense of acceptance.

Novelist Willa Cather once wrote, “I like trees because they seem more resigned to the way they have to live than other things do.” While in Vrksasana, I find imagining a tree to be grounding and comforting. Some days I’m a flexible willow; other days I feel like a sturdy oak. But the image I like best is that of a giant redwood that has survived for centuries.

The redwood watches a deer walking gracefully below or a hawk soaring above. The tree doesn’t make herself miserable trying to emulate the mobile creatures around her; she doesn’t strive to be something she isn’t. Instead, she knows how to be a tree, and she’s good at it.

Today, I am still learning to accept the restrictions that Parkinson’s disease has imposed on my life. Rather than fear what’s ahead of me, I try to branch out and nurture the seeds of acceptance and inner awareness that my practice has planted. While I’m gliding through the postures, I sometimes forget, if only for a few brief moments, that I have Parkinson’s. Unlike the rest of the day, when my mind often races ahead to the next task at hand, I can relax and be fully present in the forest of my meditation. And for that magic span of time, as I move normally, I simply feel like myself.

Although practicing Vrksasana (Tree Pose) helps with balance, of course, imagining myself as a tree also awakens a deep sense of acceptance.

Staying in Motion

When I was diagnosed with Parkinson’s, one of the first people I told was my yoga teacher, Barbara Gage. In her 32 years as an instructor, she’s worked with several students with Parkinson’s, multiple sclerosis, and other degenerative diseases. So when I explained to her what was happening to me, she wasn’t fazed.

Together we came up with a set of asanas that I could do each day at home. The emphasis is on keeping my core mobile and flexible as I slowly lose motor function, while helping me with the insomnia that my medications cause. The poses are simple but strengthening, energizing but calming.

This is only a suggested sequence for early-stage Parkinson’s and can be done in any order. I cannot recommend this practice for people who struggle with their balance without a chair or wall nearby during standing poses. If you have Parkinson’s, be sure to talk to your doctor first about treatment. Then meet with an experienced yoga teacher who can develop a practice that meets your needs.

Many of the American Parkinson Disease Association (APDA) Information and Referral Centers, more than 50 of which exist across the United States, maintain a listing of support groups and yoga instructors. To locate a group or suitable yoga teacher in your area, call your local APDA chapter, which can be found by going to American Parkinson Disease Association.

Peggy van Hulsteyn is the author of six books and has written for the Washington Post, Los Angeles Times, USA Today, and Cosmopolitan. She lives in Santa Fe, New Mexico, and is at work on a book tentatively titled Living Creatively With Parkinson’s.