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 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.
Although joint contractures (tightening) are not a frequent feature of caveolinopathy, they can occur as a consequence of reduced mobility. Regular physiotherapy can be useful to maintain good joint mobility. This can be carried out by a physiotherapist or people can be taught to do this by themselves in their own home.
Problems with breathing are usually not associated with LGMD1C, but many clinics obtain regular breathing assessments (forced vital capacity – FVC) as part of regular follow-up.
Regular cardiac assessment is usually not required because there is no strong evidence of heart muscle involvement in this condition. However, this can be discussed with your consultant on an individual basis.
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Alert cards are conveniently shaped to fit inside a wallet and outline key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health.