By Shirley Vanderbilt
Originally published in Massage & Bodywork magazine, October/November 2000.
In August 1977, Angelina Hekking was living on a kibbutz in Israel, exploring new horizons and possibilities for her life. She had been experiencing problems with headaches and strange sensations in her body before leaving her native Holland. During her 2 1/2 years in the kibbutz, the symptoms gradually worsened.
Journal notes from her book, Seeds of Light: Images of Healing, best describe her situation: “My right leg is weak and I have difficulty walking. I went to a doctor, he thinks I have a tumor. I am going back to Holland. I am extremely scared. I had planned an active life, I love horseback riding and dancing. What am I going to do now? Life seems so hard and complex. My symptoms are strange and confusing. My right leg is beginning to drag. My health is like a roller coaster. I am well for a short time, then I am sick again. There is no energy in my body.”1
Hekking was 21 years old when she was diagnosed with multiple sclerosis (MS), a chronic, incurable, neurologic disorder that steals movement and strength from the body, yet leaves the mind clear and desperate for health. Suddenly, her life was limited by a disease she had never heard of, nor wanted to accept. And she was facing a future of struggle, both with her body and her mind.
Over the next several years, Hekking experienced the relapsing/ remitting process of the disease. At times her symptoms subsided, at other times she would find herself feeling completely drained of energy. She moved from her native Holland to San Francisco with her future husband and his daughter. Despite her desire to remain strong and independent, the relapses continued to occur, leaving her frustrated and angry.
December 1981 — “One of my biggest fears with MS is paralysis...My spirit feels trapped in a body that is not mine anymore.”2 As the disease progressed in its relentless assault on her body, Hekking was eventually forced to rely on a cane for steadiness and a wheelchair to enjoy time with her family outside.
January 1983 — “I have reached a point of devastation! The wheelchair has become the only means to get around outside of the house. Where is my energy? I need so much more...I refuse to allow my disease to take away from my life.”3
It was around this time that Hekking took firm control and began exploring new alternatives. An avid photographer, she completed a community college program in photography and embarked on a project of self-portraits, which eventually culminated in publishing her book. “It was like making a movie of myself,” she said. “It was therapy, to show what it feels like to have MS.” The process of this self-motivated work to describe her journey into MS not only boosted her self confidence, but also served to fire her determination to experience a more normal life within the confines of her illness.
February 1983 — “My ability to change comes from inside of me...I am able to see the cycles in my illness...Surely I can change myself.”4 In addition to photography, Hekking took up visioning techniques, meditation, Hatha Yoga and the I Ching. But it wasn’t until she met Peter Chiu Pak Chung that this gradual transformation became a solid framework for her future.
May 1984 — “A friend told me about a slow-movement martial art exercise, called t’ai chi. I went to Washington Square Park with my cane where I met my t’ai chi teacher, Peter Chiu Pak Chung. Peter believes I can learn t’ai chi and that it will help with my walking. He makes me feel good. He helps me believe in myself.”5
Chung spoke little English. Hekking spoke no Chinese but tried her hand at learning a few basic words for social interaction. Chung instructed her through motions — up and down, left and right — with a calmness that inspired her spirit. He became like a second father to her, teaching her the moves and the inner peace that would bring balance and strength to her failing body. After just three months of t’ai chi practice, Hekking was walking and standing better, and had more self confidence.
“T’ai chi is the best thing in the world,” said Hekking recently in her San Francisco home, “but you have to do it every single day of your life. This is not a one time, once a week thing. You have to do it every day.” And she did, meeting with Chung and his group at 6 a.m. every morning.
Hekking discovered that t’ai chi helped her to become more alert and focused. In a sense, it became a time of meditation for her. “The concentration that it takes is fantastic,” said Hekking. “It is a fluid movement and productive. You (people with MS) have to keep moving. Physical exercise is the most important thing. I never knew that people like myself could do such a thing. You don’t have to be perfect, just trust in yourself. It makes people feel so empowered. Because it is so simple, some people don’t think it’s real. I know the chi is real even though I can’t see it. I know it is there.”
The T’ai Chi Pilot Study
Hekking went on to learn the swords of t’ai chi and became a teacher herself, working with groups at Washington Square Park. In 1996, she was contacted by researcher Cynthia Husted and asked to take part in a pilot program being conducted at the University of California in Santa Barbara (UCSB). Husted, director of the Center for the Study of Neurodegenerative Disorders in the Neuroscience Research Institute at UCSB, met Hekking while both were giving presentations at a local chapter of the National MS Society. Husted’s early work with integrative approaches to neurologic diseases had inspired her to pursue forming a movement-oriented class for people with MS. Although she had originally targeted yoga as the movement modality, her meeting with Hekking started a series of events eventually leading to the formation of the pilot project with t’ai chi.
According to the study report published in 1999, the objective of UCSB’s pilot was to “explore psychosocial and physical benefits” of t’ai chi for the MS population. Although the study was limited (nonrandomized and noncontrolled with a small sample of subjects), the conclusions drawn hold great promise for people with MS and hopefully inspiration for more full-scaled and detailed research.6
Participants for the eight-week project were recruited through a local California chapter of the National Multiple Sclerosis Society. The group of 16 women and nine men met for one hour each week with Hekking as their instructor. As a woman with MS, Hekking’s awareness of the limitations incurred by the disease allowed her to appropriately gear the classes to meet the special needs of her students, such as their predisposition to fatigue, overheating and imbalance. Of the 19 participants, five were diagnosed as chronic-progressive MS and 11 as relapsing-remitting. The remaining four did not know their type of MS.7
Measurements to determine outcome focused on motor function and assessment of quality of life. Before and after the study period, participants were given two tests for motor function: “(1) measurements of the speed at which participants could walk 25 feet and (2) hamstring flexibility, an indicator of overall flexibility.” A short form of the Medical Outcomes Study (SF-36), was administered at completion of the eight weeks to assess changes in “physical functioning, social functioning, mental health, general health, bodily pain, vitality, ability to carry out physical roles, and ability to carry out emotional roles.”8
It is important to note that results of the study do not qualify as statistically significant because of the small sample size and lack of control group. But Husted pointed out that qualitative assessment of positive results was readily apparent through her weekly observation of the class. “For example, when physical outcomes were measured before the program began, one participant could not stand upright without leaning against a wall because he could not maintain his balance.” She noted that toward the end of the program, he “was able to stand freely without support and perform the t’ai chi movements without losing his balance.” A wheelchair-bound participant was able to stand periodically near the end of the program, while another was able to forego use of a cane to practice the movements.9
Assessment of motor function indicated a 21 percent increase in walking speed for 25 feet and a 28 percent increase in hamstring flexibility. Results of the self-assessment survey indicated an improvement for all participants in areas of psychological, emotional and social function. A self-rated increase in physical function was noted only for those participants with chronic progressive MS. In addition to the measurement results, participants remarked on a variety of personal social and emotional benefits. Among their comments were appreciation of strong group support and bonding, delight over formation of new friendships and feelings of empowerment in managing their symptoms. In one case, a participant stated, “I felt graceful for the first time since I was diagnosed.”10
The research team noted that conducting a scientific study of people with MS is complicated by the disease itself. Exacerbation of symptoms are unpredictable, making it difficult to draw definitive conclusions from results of physical measurements. However, as noted in the report, the results of this study are similar to one conducted in 1996 implementing a 15-week aerobic program for subjects with MS. Findings from that study showed a positive impact of aerobics on fitness, quality of life, fatigue and depression.11
As a neuroscience researcher, Husted’s work is focused on increasing the availability of alternative treatments to those with neurologic disorders. She emphasized the importance of an integrative approach in treating all facets of MS, combining medical treatment with other therapies such as exercise and nutritional rehabilitation. “We are hoping to get more programs available,” said Husted, reflecting on the applicability of her study. But she noted that as programs become more integrated there will be an increased need to provide education to instructors regarding the special needs of the MS population.
These studies and others reflect Hekking’s assessment that movement through physical exercise is essential to people with MS, as well as some other chronic disabilities, for managing symptoms and improving quality of life. Researchers at Northwestern University Medical School, conducting a study of 22 people with mild balance disorders, reported significant improvement in balance after an eight-week program of t’ai chi.12 Studies conducted on elderly populations in China during the 1970s and 1980s confirmed not only physical benefits, but also improvement in areas of social adjustment and mood.13 Other t’ai chi studies have shown benefits such as increased upper extremity range of motion for rheumatoid arthritis patients and enhanced strength and balance in the elderly.14
In the case of MS, gradual loss of mobility is an especially frustrating and limiting symptom, affecting all phases of the patient’s life and contributing to depression and diminished social contact. T’ai chi and other gentle alternative treatments allow the patient to take an active role in their own health promotion program. Researchers at UCSB noted, “Replacing the sick role with one that encourages personal responsibility and freedom of choice leads to a sense of empowerment and independence. This in turn enhances psychosocial and physical well-being.”15
Yoga, meditation and massage are among several other alternatives recommended to people with MS to strengthen not only their bodies but also their self-esteem and peace of mind. Because exacerbations or relapses are often precipitated by stress, body-mind treatments have been found to be an essential tool for managing the disease and its symptoms. In 1998, researchers at Touch Research Institute reported results of a study on the benefits of massage for MS patients. In this randomized, controlled study of 24 subjects, “The massage group had lower anxiety and less depressed mood immediately following the massage sessions, and, by the end of the study, they had improved self-esteem, better body image and image of disease progression, and enhanced social functional status.”16 Breathwork, whether through t’ai chi, yoga or meditation, has also been recommended to facilitate increased alertness and to relieve tension.17
T’ai Chi Warriors
Despite her hard work to maintain walking skills, Hekking is now in a motorized wheelchair. Diagnosed with progressive/relapsing MS, she is prone to recurring attacks in reaction to stress. The death of her t’ai chi teacher two years ago and the serious illness of her father initiated the relapse. But Hekking has not allowed her grief and the decline of her health to dampen her spirits. She is a fighter to the core, once again working hard to generate movement in her body through a self-disciplined program of qi gong, horseback riding, swimming and yoga. Although getting around is difficult for her, she still goes to Washington Park occasionally to join the t’ai chi group. And she has resumed visits to her karate class where she earned a brown belt and is now teaching t’ai chi to the disabled from her wheelchair.
When working with her students, Hekking emphasizes the importance of breathing in performing t’ai chi movements. “Many people do not know how to breathe. In fact, some people stop breathing,” she said. “And it’s a lot of work to remember each step. I get a sense of the student, what they are capable of doing, and encourage them to just let go and be...go with the breathing. Every movement is with the breathing.” Hekking also emphasizes the push/pull action of t’ai chi. “I tell my students to push out the bad and pull in good energy, to bring in something new with the movement.
“The body tries to heal itself and we have to give it the option. You are your own motivation,” said Hekking. “Exercise should come from your heart, with an attitude of willingness and believing that it will work.”
Joe Stannard believes it will work. Stannard attends a Health Recovery class twice a week at the Taoist T’ai Chi Society in Denver, Colo. During an interview earlier this year, Stannard exhibited his determination by performing “danyus” while holding onto a wooden bar that runs the width of the practice room. According to Kara Lang, a Health Recovery instructor at the center, this t’ai chi movement of raising and lowering to a squat stretches the back and opens the tissues. “It’s important for increasing strength to get in and out of a wheelchair,” said Lang.
Pulling toward the bar from his wheelchair, Stannard rocked forward and backward, gaining momentum, then hoisted himself to a standing position. The bar shook violently from the tremor in his hands, but he continued, raising himself to the bar and back, almost touching the wheelchair, then forward again. After some time, Stannard paused upright and was asked, “How many is that?” He replied, “Now I’m just standing.” Then after another pause, he said, “It brings back old memories.”
Stannard has been in a wheelchair for five years and when he began t’ai chi three years ago was unable to get out of the chair on his own. “T’ai chi is an exceptional thing,” said Stannard. “It makes me stronger and more relaxed. I’m more focused and calm.”
Like many health and exercise programs across the country, Denver’s Taoist T’ai Chi Society is offering people with MS an opportunity to explore new avenues for coping with their symptoms. In the Health Recovery class, disabled participants learn the 108 movements of t’ai chi at their own pace, in small segments and according to their abilities and energy levels at the time. Once a week they join a continuing class where they can experience the flow of the full set of movements, and learn by watching others. “They learn how the moves work with the body,” said Steve Harris, who also teaches Health Recovery classes.
“We see how the bodies work and focus on what is needed to make the body work well,” said Harris. “Such as, how the weight is shifted, where the weight is, helping to shift differently, or to put weight where they haven’t been able to before. I have seen people go from the wheelchair to the walker to crutches to a cane. With pain, a large component is lack of use. Tao calls the tendon the whole system: muscle, tendon, all the tissues. When there is atrophy, there is pain if they move even a little.
“There’s no real difference between the mind and the body,” said Harris when asked about the benefits of t’ai chi for increasing self-esteem. “We don’t talk about these things. They happen as you do them,” he replied. As for those he works with, Harris said, “They work hard. Harder than I do.”
The results of Stannard’s hard work were readily apparent when Massage & Bodywork visited Health Recovery class again several months later. Even though he appeared fatigued that evening, he approached the bar with the same determination as before and was visibly stronger in performing his danyus. He had just returned from an intensive class at the Taoist T’ai Chi Society’s residential Health Recovery camp in Canada. Joking with his classmate Valerie Wycotton, Stannard complained that not one, but two camp instructors critiqued him while he performed danyus, making it twice as hard. But he pointed out that he had learned a lot about positioning his body to gain more strength.
A third participant in the class, a young man with brain damage due to an auto accident, asked Wycotton, “What is MS?” To explain her symptoms she said, “The message doesn’t get to where it’s going.” A few minutes later when the group was practicing a foot movement, Wycotton asked, “Can you see my foot moving?” Although her foot remained lifeless, she said, “I’m sending the message. I can see it moving in my brain.”
Hekking believes that where there is a will there is a way. “I have done t’ai chi in bed. I visualize it. I do it in my head.” And she believes that the body will eventually follow.
The words of Joe Stannard reflect that same belief. Completing his danyus, he lowered himself to his wheelchair, turned away from the bar and with a true warrior’s courage and conviction said, “I’m going to walk.”