Exercise, Physical Therapy and FSHD
A physical therapist (PT) who is experienced with FSHD patients can be invaluable. Physical therapists administer some exercises directly (e.g., stretching) and teach patients how to perform other exercises; for the latter, the goal is to learn the exercises so the patient eventually can do them on her own or with the help of family members or friends. FSHD patients ask their doctors to prescribe physical therapy: when they feel their FSHD is progressing more rapidly than usual; periodically to monitor how they perform their exercises; and to rehabilitate specific conditions or injuries such as strained or pulled muscles or injuries from falls. Many find it useful to go to a PT for a “tune up” from time to time.
Many people with FSHD enjoy swimming and find it beneficial. Swimming has a low impact on the joints and bones and a low risk of injury. The buoyancy of the water provides resistance, which affords the opportunity for gentle exercise and also enables some people to do things they are unable to do on land - for example, someone who can’t stand or walk on land may be able to stand and walk in water. It can also be beneficial to do stretching exercises in the water. Watsu, a form of massage done in the water, combines the benefits of ordinary massage and being in the water. Both massage and Watsu should be done only by certified professionals. www.Watsu.com.
For FSHD patients with reduced mobility, being in the water can provide freedom of movement and a welcome feeling of exhilaration, energy and relaxation. In recent years there have been an increased number of therapeutic swimming pools with access and special programs for disabled people; some of these pools have extremely warm water, which can be soothing for people who can’t move quickly or who are in pain.
For some people with FSHD who can no longer walk, standing with the aid of a standing frame can be beneficial. A standing frame is a piece of equipment that can straighten and elevate a person into a standing position, and support him in that position. For some people, standing in a standing frame can help maintain range of motion and reduce the possibility of contractures, relieve pressure on the posterior, increase circulation, reduce stress, realign the internal organs and provide weight bearing to preserve bones.
As with all exercise, it’s important for FSHD patients to consult with their doctors and physical therapists before beginning a swimming program and before using a standing frame. The risk of overuse is ever present, so it's essential to monitor closely how you feel. When in doubt about an exercise, seek professional help. When in pain, stop doing it.
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Links to recent publications on FSHD and physical therapy and exercise
The purposes of these articles are to increase awareness of FSHD among clinicians; to provide an update regarding the genetics, clinical features, natural history, and current management of FSHD; and to discuss opportunities for research.
2010 FSH Society International Patient and Researcher Network Meeting
Phys Ther. 2008 Jan;88(1):105-13. Epub 2007 Nov 6.
J Neurol. 2007 Jul;254(7):931-40. Epub 2007 Mar 14.
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* * * * * * * * *The information on this website is provided for general informational and educational purposes only. The FSH Society and this website do not provide medical advice or recommendations. Licensed physicians and other medical professionals who are familiar with an individual’s specific health situation should be consulted for diagnosis and treatment of Facioscapulohumeral Muscular Dystrophy and any other medical conditions. Neither the FSH Society nor any contributor to this website can be liable or responsible for any result derived from the use of this material.
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