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NCHPAD - Building Healthy Inclusive Communities

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Community Voice: More Than a Diagnosis


Kathy Wood, full-time director of an Independent Living Center, does some type of exercise every day and goes to the gym three times per week to perform her self-designed, multi-faceted exercise program. Typically, she walks about 1 mile per day and performs daily stretching, but frequently does light weight training in addition to a stability ball program three days per week. This sounds fairly ambitious if you are among a large percentage of the population that struggles with the motivation to meet U.S. Surgeon General Activity Guidelines. However, Kathy's routine is second nature and she wouldn't consider skipping a session. Her cerebral palsy (CP) wouldn't allow it. With exercise, Kathy has been able to work through the pain and other secondary conditions associated with CP and maintain a level of daily activity that makes her a well-rounded and physically fit person.

As a child with CP and a subluxed hip, Kathy was always told NOT to exercise. After her high school graduation, she sought alternative answers and found an orthopedic surgeon who refused to operate, advising that her limitations were only known by her and were not to be determined by a doctor. This suggestion of "lifelong self-management" inspired her to join a gym (which was rather primitive in the 1970's compared to today's facilities). Today, Kathy has been exercising for 35 years.

In Kathy's exercise program, it typically takes her about 35 minutes to walk 1 mile with her crutches (one of which is longer than the other in order to avoid wearing "Frankenstein" shoes). Her full-body weight training incorporates light weights on a Nautilus machine and focuses on correct form and proper breathing. A Swiss ball program three times per week adds to the variety of her workouts and has also helped increase her balance and stability dramatically. Since beginning the ball program, she has noticed that it is now second nature for her to tighten her core muscles (i.e., abdomen) and shift her weight instead of simply accepting a fall and meeting the ground. In performing these ball workouts, Kathy has found that only wearing one shoe is a simple, yet important, modification. Daily stretches, as well as further yoga-based stretches on gym workout days, are also an important part of maintaining Kathy's physically fit persona.

Kathy has found that when she does not exercise, various secondary conditions, such as increased spasticity and weakness, quickly become debilitating. Four years ago, she experienced a fall that required she stop exercising in order to heal and to deal with the pain. However, she found that she had to get back to exercise in order to manage the pain, as pills did not completely address the issue and only made her groggy. She currently manages her pain by stretching and breathing/meditation exercises. Kathy acknowledges that she is going to constantly have some level of pain, but exercise helps her push it to the side ("Get out of my way!") and move on with life. She likes to stay active so she doesn't have time to think about the pain.

Working out with other people provides a much needed social outlet and also helps her to not be disability-focused. Kathy finds it important to see oneself as a well-rounded individual and not concentrate on any one aspect, whether that is a disability or any other characteristic of a person. Other activities that Kathy has been involved with have also contributed to her active lifestyle, both socially and physically, including a high ropes challenge course at Westchester University in Pennsylvania and modified cross-country skiing with the Ski for Light program (http://www.sfl.org/).

Kathy expresses frustration with the limited amount of research being done on fitness in people with CP and the manner in which fitness in people with CP is viewed. Physical therapists have often responded to her workout program with "you are functioning far beyond your diagnosis." To that, Kathy says, "we have got to change the attitudes of health professionals and parents so that folks who live with CP are seen as more than a diagnosis."


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