Keeping mobile is important for all people affected with muscular dystrophy. There are no guidelines about the type or intensity of activities, however it is recommended that advice on exercise should be discussed with your consultant because of the associated heart problems.
Joint contractures (tightening) or foot drop can occur in LGMD1B 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. An orthopaedic opinion may be indicated and orthoses (splints) are sometimes worn to enhance good positioning of the ankle joints or to help with foot drop if there is weakness in the feet.
Because of the risk of problems with the heart in LGMD1B, regular heart checks are required and these should include ECG (electrocardiogram) and echocardiogram. Many treatments are available and may include the insertion of a device (defibrillator) which controls the heart rate. This will be discussed with you by a cardiologist.
With progression of the muscle weakness, people with LGMD1B may develop breathing difficulties. Therefore, regular monitoring of respiratory function (forced vital capacity – FVC) is recommended. Sometimes overnight studies are indicated (pulse oximetry).