Aquatic Exercise for Muscular Dystrophy: The Story of Laura Sos, Castellón, Spain


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Laura Sos was born in June 1969 in Castellón, Spain. At age 4, she was diagnosed as having slow progression degenerative muscular dystrophy (MD). From approximately age 11, she began land-based physiotherapy-assisted active and passive stretching treatments to increase range of motion, and she still maintains this treatment.Laura functioned independently until the age of 21, at which time, she developed pronounced lumbar lordosis when walking. It was at this time that she began to have difficulty moving and required assistance when transitioning from a seated to a standing position.Walking distances became shorter, and progressive fatigue kept Laura, at 27, wheelchair bound when she left the house. Her condition continued to worsen so much so that by age 31, she had lost so much strength that she needed to use a walker to move around her house. She learned how to lean on other people, the furniture, or the wall to stand up from a seated position and grab the walker.Two years later, at 33, she used her walker and began to wear an ankle-foot orthotic to minimize the effect of pes equines. Pes equinius, also known as "clubfoot," is a deformity in which the toes are extremely flexed. Walking is performed on the dorsal surface of the toes, and the heel does not touch the ground.A year later, at 34, she could no longer get up or sit down by herself. Laura lost strength in her upper body and stopped using the walker, relying more on the wheelchair for mobilization around the house. Pain in her lumbosacral region increased, leading to even greater movement limitations. Her morale began to decline as she became less autonomous and realized that her illness was progressing with more bad days than good. By age 35, Laura's generalized loss of muscular strength and chronic debilitating pain in her lumbosacral region meant that she could not bear to sit for more than 1.5 or 2 hours at a time and spent most of the day lying down.It was then that Laura began aquatic exercises. During the first few months, we observed that she was a very withdrawn young woman, who was pessimistic. She hardly ever smiled, was suspicious of the challenges we put before her, and was afraid to try any new exercise. At home, she spent a lot of time alone in her room lying down because of back pain. Fortunately, she enjoyed being in the water quite a lot, and gradually, we were able to get her to relax and trust the aquatic program, which we designed especially for her.WHAT IS MUSCULAR DYSTROPHY?Muscular dystrophy (MD) is a term used to describe a group of more than 30 inherited disorders that cause progressive muscle weakness and degeneration of skeletal muscles that control movement. Some forms of the disease also may affect cardiac muscle function (6,7).Congenital MD, the kind Laura lives with, is a rare form of the disease that is present from birth and can affect men or women. The cause of the disease is thought to be a genetic mutation affecting some proteins used by the muscles and sometimes the eyes and brain (4). Symptoms usually progress slowly and include general muscle weakness, flaccid tone, bent joints that may be either stiff or loose, spinal curvature, respiratory insufficiency, and slow motor development (4,7). In some cases, people also may present with mental retardation or learning disabilities, eye defects, or seizures (4).

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