Water Training and Ehlers-Danlos Syndrome

In recent years, water training has become the basic building block of therapeutic and conditioning programs for a wide range of people: athletes, dancers, fitness, fitness enthusiasts, post surgical patients, and those with arthritis and Ehlers-Danlos Syndrome (EDS). In water, you can walk, run, jump and kick without any trauma to your weight-bearing joints. The moment you slide into the water for a workout, you feel significantly better. Pain is reduced; mobility is regained. Where you sensed helplessness, now there is hope. For in water, you can perform movements that seem but a dream on land.

I have Ehlers-Danlos Syndrome type III. I started exercising in water with Linda Huey as an alternative to physical therapy in May of 1990. I have problems with many of my joints, and was looking for a form of exercise and rehabilitation that could help me strengthen the muscles around my joints to increase stability. Further, I wanted to prevent dislocations in currently non-affected joints. Having been a runner and a volleyball player during my high school and college days, I missed being active and feeling fit. Besides finding a way to preserve my joints and decrease pain, another of my motivations was to find a way to get in shape. Running, fitness walking, and bicycling were not options because of arthritis and my frequent patella dislocations. I contacted Lynda. I was the first person she had met with Ehlers-Danlos Syndrome, and she was eager to work with me. The program she set up for me includes a cardiovascular workout and isolated exercises for my upper and lower extremities.

You can build a Water Healing Workout that protects the injured body part form further harm, while the rest of the body continues to train. Standing in chest-deep water, you weigh only 10% of your normal body weight, so every exercise is low impact. If no impact is required, you can put on a flotation device and train while suspended in water. Injury areas are immobilized to prevent aggravation either with tape, slings, braces, or waterproof casts. If you don't normally wear braces, you probably won't need them in the pool. If you do wear braces, check with the manufacturer about using them in water and make sure that you rinse them out well after the workout.

Because of joint instability, I have found it necessary to wear protective devices in the water. Deciding which braces I needed was done by trial and error. I had patella (knee cap) dislocations and ankle instability in my left leg if I did not wear knee and ankle braces into the water. I use the CTI Brace (from Innovation Sports) for my knee and a standard ankle brace with a figure-8 wrap around my ankle. Because of multiple hand surgeries, I must also wear a right hand splint for protection. Whenever I have problems with shoulder dislocations, I also wear a shoulder immobilizer. This sounds like a lot to wear during a workout, but it allows me to safely exercise without injury. If I shrug off one of more of the protective devices, I usually experience pain, instability, and/or dislocations.

You may not have exercised in months or even years, yet you can enter the water and begin immediately. Most EDS patients should begin with the Deep Waterpower Workout, in which there is absolutely no weight bearing. You don't even need to know how to swim, for you will be wearing a flotation device that will hold you in a comfortable upright position for exercising. Choose a Wet Vest ($130), a Wet Belt ($40), an Aqua Jogger ($50), or use a standard water ski flotation belt ($10-$20) -- whatever best fits your body and your pocketbook.

Once outfitted, take to the water and slowly begin water running. Keep in mind your specific limitations. You may feel terrific floating along the surface of the water, but remember to try any movement, particularly ones that involve your affected joints, with caution. Move slowly through a narrow range of motion. If such movements cause no pain, gradually reach for a wider range of motion. Add speed last and with care. EDS patients should use the resistance of the water only; don't apply undue stress to the joints by adding any of the new resistance equipment devices.

Water Running. Keep your chest and head erect. Shoulders are relaxed and down. Knees lift to 90 degrees while the arms pull forward and back with no lateral movement. Hands are relaxed with the thumbs towards the sky. Pull the elbows back, each in its turn, and touch each hand into an imaginary pocket. Don't lean too far forward, or you'll be a dog paddling. Simply lift the knee, and then push the foot straight down behind you. Don't lean to far back or you will have a tendency to kick forward into a bicycling motion. Move around the pool for five minutes as you warm up. (If the pool is small, or if you need to stay in one place because the pool is crowded, use a Perry band ($50) or StretchCordz ShortBelt ($35) to tether yourself to the side of the pool.)

I noticed results right away. I expected to be sore, but I wasn't. I had less pain in my joints after the first workout. More important was the sense of accomplishment I felt. Wow! I could actually exercise without joint dislocation; something I hadn't been able to do in years. Over the months of water training, I have noticed that my joints are getting stronger and even though I continue to have dislocations, they are not as traumatic and not as frequent. The water offers me a soothing affect after any dislocation, and helps lessen the pain. I am now in better shape. I've lost 20 pounds and I seem to have more energy during the day. After years of focusing on what I can't do, I now focus on what I can do. It’s great to be able to run in the water. I feel like a runner again!

Water Walking. Start by establishing an "opposite positions". Hold your right arm forward and extend your left forward at the same time. Begin walking, keeping both your arms and legs straight. Visually check your elbows and knees. Most people think these joints are straight when they are not. Stay upright; don't lean forward or back. Water walk for three to five minutes, or until you become confident of the movement. Insist on opposition: right arm with left leg are left arm with right leg.

Having learned water running and water walking, you can now build a training program by altering those two skills and challenging your muscular strength and aerobic skills.

I've had several interruptions in my water rehabilitation program because of joint surgery, casts, and skin and healing problems. Since I have problems with healing and am prone to infections, I wait until my incisions are completely healed, and I always check with my physician for clearance before rushing quickly back to the water. Occasionally, Lynda and I have figured out ways to keep me active during what normally would have been an interruption. After a thumb injury that required casting, I asked my doctor to use a new waterproof gortex cast padding so I could continue water training. Since I had no open wounds, he agreed and we continued. Other times, we taped my arm into a plastic bag and elevated it above water level on flotation devices.

Water running and water walking are the two key exercises in a deep-water training program. However, other deep-water exercises specifically for the abdominals, arms and legs can be added over time. If you'd like a copy of the Deep Waterpower Workout booklet, due out in early 1992, or any of the equipment listed above please contact:

Huey's Athletic Network
3014 Arizona Avenue
Santa Monica, CA 90404
(310) 829-5622
Fax: (310) 828-5401

Exercise can be very important for patients with Ehlers-Danlos Syndrome, but finding the right form of safe exercise is the hardest part. Although EDS affects all of us differently, I feel that everyone can benefit from some form of water exercise. Just check with your physician before beginning this or any exercise program

Water training has made a big difference in my life. It has helped me strengthen my joints, increase stability and stamina, lose weight, and feel better both physically and emotionally.

Lynda Huey, M.S., has water trained dozens of Olympic and professional athletes as well as worked with many pre-surgical and post-surgical patients. In 1986, she published The Waterpower Workout (New American Library) and is finishing her next book Water Healing Workout: From Rehabilitation to Gold Medals.

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