Keeping mobile is important for all people affected by muscular dystrophy. There are no guidelines about the type or intensity of activities however it is recommended that any exercise undertaken is done within your limitations and ensuring you remain comfortable.
Extreme tiredness, muscle pain and cramps during or after activities can mean that you have pushed yourself too hard and therefore those activities should be avoided. Swimming is a good activity because it promotes movement of all muscles without increased strain.
Joint contractures (tightening) can occur in sarcoglycanopathies and therefore regular physiotherapy is recommended. This can be carried out by a physiotherapist or people can be taught to do this by themselves in their own home.
These types of exercise can include the stretching of all joints, in particular the ankles, knees and elbows. If ankle contractures impair mobility, referral for an orthopaedic opinion may be indicated.
Orthoses (splints) are sometimes worn day or night to enhance good positioning of the ankle joints. In the case of severe contractures, minor surgical procedures may be necessary.
People with sarcoglycanopathies are at risk of developing breathing difficulties. Therefore regular monitoring of respiratory function (forced vital capacity – FVC) is recommended for identifying any problems early on and treat them if necessary. Sometimes overnight studies are indicated (pulse oximetry) and people may benefit from treatment with assisted ventilation at night.
All people affected by sarcoglycanopathies should have the pneumovax vaccination and annual flu immunisation to prevent serious chest infections.
Because of the risk of problems with the heart in sarcoglycanopathies, regular heart checks are required and these should include an electrocardiogram (ECG) and echocardiogram. Many treatments are available and these will be discussed with you by a cardiologist.