Key Management of Congenital Muscular Dystrophy
- It is important to encourage independence, so powered wheelchairs may be used for those with more severe forms of CMD. In stronger individuals KAFOs may be used to promote ambulation.
- All children will benefit from support for activities of daily living at home and therefore early assessment and assistant should be provided by occupational therapy.
- Encourage activity as an exercise which is symmetrical. Asymmetrical exercises can adversely impact posture and deformity.
- Low impact activities such as swimming or cycling can be beneficial but high impact sports should be avoided.
- Hydrotherapy or water based activity is recommended.
- Regular review of the spine neck and pelvic alignment are important especially when individuals are still growing.
- Neck collars may be useful when travelling during times of severe pain or fatigue, but they should not be used for prolonged periods as they may make neck muscles weaker.
- Stretching may be beneficial but beware of over stretching as it can cause pain.
- Encouraging individuals to perform their own stretches is recommended.
- Orthotics are really important in this group and may include the provision of spinal support, jackets and braces.
