By: Heidi A. Heltzel Issue: Transformation Section: Community Many people encounter a time when life as they know it falls to pieces. That happened to Tara Lane when she was just a teenager. An award-winning figure skater, competing at both regional and sectional levels was her greatest passion. At 16 that was all taken away from her by one 30-minute doctor’s appointment. Her intense training schedule had taken a toll on her body and resulted in several fractures in her legs and severe muscle damage. A two-year recovery period began, and competitive skating became a closed chapter in her life. “Everything I knew, identified with and that defined me as a person was instantly gone. Little did I know it was just a test for what my future was to bring,” said Lane.
After realizing she would never return to the career she once had, Tara rediscovered purpose and passion as a figure skating and power skating coach for hockey players and teams. Then another doctor’s appointment changed her life, yet again. On March 2, 2000, she was diagnosed with multiple sclerosis—three weeks after her wedding. Scared and uncertain, two things went through her mind: “My skating was going to be taken away from me for the second time, and my husband would leave me,” she said. Upon receiving this diagnosis she said to her husband Matt, “You don’t have to live with this, but I do, and I love you enough to let you go.” His response was that he had married her “for better or worse, in sickness and in health.” He was in it for the long haul and declined her offer for an annulment. After the initial shock of the diagnosis, she took a step back and realized that once again, she was going to need to adapt.
Multiple sclerosis (MS) is a chronic, unpredictable disease of the central nervous system. It is as unique to the individual as is the individual who has MS. Doctors don’t know what causes it, and there is no known cure. The disease typically attacks multiple places, causing plaques or scarring (scleroses), hence the name multiple sclerosis. Thought to be an autoimmune disorder, a person’s immune system attacks healthy tissue. Symptoms appear when an attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is often compared to the insulating material around an electrical wire—and its loss interferes with the transmission of nerve signals.
Symptoms include blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness and more. These problems may be permanent, or they may come and go. It is not considered a fatal disease as the vast majority of people with it live a normal life span. But they may struggle to live as productively as they desire, often facing increasing limitations.
Most people are diagnosed between the ages of 20 and 50, although individuals as young as two and as old as 75 have developed MS. More than twice as many women as men have MS. It occurs in most ethnic groups, but is more common in Caucasians of northern European ancestry. While there is no evidence that MS is directly inherited, studies suggest that genetic factors make certain individuals more susceptible than others.
According to the National Multiple Sclerosis Society, an estimated 400,000 Americans have MS, and every week about 200 people are diagnosed. Worldwide, MS affects about 2.5 million people. But because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, more precise numbers are not available.
Following Lane’s diagnosis, she did a lot of research and tried to manage her health, career and first year of marriage amidst a demanding schedule. Ultimately she personally felt unsuccessful at all three. So in April 2001, she knew she was going to have to make some changes and decided to focus on what she was most passionate about—her health, skating and life with her husband. But as these things sometimes do, the focus faded and she slipped back into her hectic lifestyle, and the pace put her in a 10-week relapse. “I was numb for the waist down as were both my hands,” she said.
This was the perfect lesson for Lane to realize that she had to slow down, but it didn’t come easy. However, with tremendous support from family and friends, her life took on new meaning.
Four years later Lane and her husband decided to relocate to the Vail Valley to live a dream—instead of just talking about it. In an effort to meet people and connect with the MS community, she started volunteering at Can Do Multiple Sclerosis. Founded in 1984 by Olympic ski racer and medalist Jimmie Heuga, Can Do Multiple Sclerosis (formerly The Heuga Center for Multiple Sclerosis) has been at the forefront of promoting the culture and belief that everyone living with MS has the power to live full lives. Can Do MS is driven by one simple belief: that you are more than your MS. With a vision, a mission and core values rooted in the legacy and belief of its founder, Can Do MS promotes a whole new way of thinking about, and living with, multiple sclerosis.
Through its lifestyle empowerment programs, Can Do MS is about learning the individualized skills and mind-set to take active charge of one’s health and life with multiple sclerosis. It’s about helping people regain a sense of control, dignity and freedom by teaching them and their support partner how to overcome the unique challenges of MS, while creating personalized lifestyle strategies that help them live their best lives with the disease.
Diagnosed in 1970 at the age of 26, Heuga became a pioneer in the MS care management field. At the time of his diagnosis, and in line with conventional medical wisdom of the time, he was advised to avoid physical activity to manage his condition and preserve his health. Being a high-caliber athlete and rebelling against his prescribed sedentary lifestyle, Heuga began developing his own program of exercise, nutrition and mental motivation to improve his physical condition and outlook on life with MS.
As his condition improved, he not only realized the power of exercise, nutrition, positive thinking and movement to enhance his life with MS, but more importantly, he realized that by focusing on what he could do rather than what he could not, he was able to go beyond perceived limitations to live his best life with MS. Heuga’s mind, body and wellness-based approach to managing and enhancing life with MS changed the way the MS field viewed and treated MS.
Today, as researchers continue to seek a cure for MS, Can Do MS’s interdisciplinary approach continues to fill a unique gap in the continuum of MS care management. With an interdisciplinary team of MS experts, their lifestyle empowerment programs teach participants how to take control of as many aspects of their lives and their health as possible by focusing on what they can do.
The unpredictable nature of MS combined with the complexity of its various stages, its individual nature and ability to affect any part of one’s body creates multifaceted challenges for people living with MS and their loved ones. Can Do MS is the only resource of its kind in the world. They begin where other health and wellness programs leave off, complementing the traditional models of MS care by providing a more personalized, engaging and experiential approach to enhanced well-being with multiple sclerosis. They provide one of the industry’s most comprehensive support partner programs, leveraging a range of engaging, experiential and active-learning interaction. By gaining a more in-depth understanding of their unique condition, their body and themselves, and blending that knowledge with realistic and personalized goal setting, individuals learn what is possible with MS and how to live fuller, richer lives within the constraints of MS.
The more Lane learned about Heuga’s story and Can Do MS’s philosophy, the more she wanted to attend Can Do MS’s flagship four-day CAN DO Program with her husband as her support partner. “After learning about the four-day CAN DO Program and what it offered, I realized that I had not addressed the WHOLE me, and there was more that I could do for myself and husband,” Lane said.
Having just moved to Colorado, the couple could not afford to pay to attend the program, so she applied for a scholarship and in May 2007, they attended the CAN DO Program in Vail. “The CAN DO Program is an amazing and unique experience that everyone with MS can and must experience. Meeting with the specialists and attending the lectures just confirmed that the positive living strategies that I live by are working while giving me suggestions to further improve my life, overall health and live my best life possible. Most important, it helped me realize my true potential,” declared Lane.
Today, Lane is a valuable member of the Can Do Multiple Sclerosis staff. And if you ask her, she would tell you that her MS stands for her “Motivational Spirit.” Each year she pays the scholarship she received forward by hosting an MS Skate-a-Thon fundraiser in Vail so that others will be able to benefit from a scholarship, and all that the program has to offer.
Can Do MS recently earned a four-star rating, the highest rating possible, for the fifth consecutive year for its ability to efficiently manage and grow its finances from nonprofit evaluator Charity Navigator. More than 80 percent of the dollars they receive are committed to programs and services, which are provided free of charge to more than 98 percent of their participants.
A national nonprofit organization based in Edwards, Colorado, Can Do Multiple Sclerosis is an innovative provider of lifestyle empowerment programs that empower people with MS and their support partners to transform and improve their quality of life. For more information or to support the program so that they can expand their services, visit the organization’s website at www.mscando.org, or call 800-367-3101.