And Proves that Success doesn't have to mean Being Sweaty!
by Amy G. L., Arkansas
A little background…I had my first brain tumor removed in 1984 and was officially diagnosed with VHL in 1992 after a second brain surgery. I’ve had two partial nephrectomies in 1993 and 1994, one eye laser in 1996, spinal surgery in 1997, and a third brain surgery in 2002. The brain tumors left me with ataxia, and after the spinal surgery I had more difficulty walking and developed RSD of the right leg (reflex sympathetic dystrophy). I’ve undergone physical therapy off and on since 1992. Today, I walk with a cane, or weave around without one on ‘better days.’ I use a wheel chair when traveling in an airport to conserve energy. I work out two or three times a week: 45 minutes on a stationary bike or elliptical machine, and another 30 minutes on machines and/or light weights. In the future, I plan to be back in a therapy pool every day and exercising, mostly using Pilates…
When I first read about Pilates (puh-LAH-teez), the exercise system that strengthens and stretches the body’s core muscles (abdominal, lower back, hips, and buttocks), I had high hopes that it would help me because the exercises were specifically designed for people with disabilities. I’ve now taken 11 hour-long lessons since May, and noticed differences almost immediately. After three lessons, an ankle that for 6 years has always swelled by the end of the day hadn’t swollen once, even after a long plane trip or a day spent mostly sitting, which I consider a minor miracle and attribute to Pilates. The exercises not only strengthen and tone the body, but also encourage more circulation. I’m walking better, standing straighter than ever before, and feel stronger and more balanced.
I cannot recommend this exercise enough. I’ve taken yoga off and on for years, and while some of the exercises remind me of yoga, Pilates makes me feel much better overall.
I think it important to note, however, that I’m touting private lessons using the Pilates equipment. While there are group classes available where you learn different floor exercises and ‘mat’ work, as well as books and tapes available for home use, Pilates takes concentration, control, and practiced breathing. You really need to know you are doing it properly from the first. I don’t discount these other ways to learn, in fact, once I’m confident I’m performing the exercises correctly I will probably go these routes, too, but this is an exercise routine that is tricky at first: there are subtle movements you must learn to make in your breathing in conjunction with your posture and abdominal muscles, and if done incorrectly, you can end up with little results, or worse, inadvertently hurting yourself. Start by investing in some private lessons; the one-on-one coaching could make the difference between failure and success.1
Doing a little web research on the subject, I learned that most instructors agreed: if you aren’t strong enough to control your muscles, you should begin by using the machines first, building towards strengthening the body. Learning Pilates takes time; my instructor calls it the "thinking person’s exercise," because you are engaging your body to work in unison with your muscles, and this takes time to learn (at least, it does for me). But it’s well worth the effort. By lengthening joints and strengthening muscles, you gradually strengthen the body to deal with daily activity and sports. Once you learn to engage core muscles, you automatically learn to hold in your abdomen all the time. This alone helps greatly with chronic back pain.
Joseph Pilates was a German with an interest in the human body. Weak and sickly as a child, he taught himself exercise techniques that were so successful he was encouraged to begin working with disabled soldiers in World War I, strengthening their muscles with mild resistance exercises they could perform in their beds using bedsprings. He eventually moved to New York, where Ballanchine dancers began using his techniques to rehabilitate their bodies. Pilates wanted people to learn to focus on their bodies and not on their injuries – thinking of themselves as healthy, normal people who happened to have injuries that needed correcting. He felt that this way of thinking enables one to take responsibility for their body’s health and overall well-being.
If Pilates intrigues you, call the National Pilates Studio (1-800-4PILATES) to ask for a master list of instructors near you, and give it a try. On the Internet, WebMD has articles on the subject.
They will warn you to find an instructor with at least a year or two of solid instruction – this is such a controlled discipline that a teacher having only a week or weekend course will not suffice!
1. Note: Some pilates movements involve sudden or prolonged hyperextension of the neck and back that could pose a problem for persons with lower brainstem or spinal cord hemangioblastomas or previous spine surgeries. Also, holding some of the positions can involve a Valsalva maneuver that can increase Central Nervous System (CNS) pressure. Anyone with CNS hemangioblastomas or prior surgeries should check with their physician before starting a program, and, as Amy recommends, learn with a personal instructor.
As printed in the VHL Family Forum 11:3, September 2003. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.