In the late ambulatory stage, walking becomes increasingly difficult and there are more problems with climbing stairs and getting up from the floor.
Continued support from professionals will be necessary to help with any learning and behaviour issues, and specific help may be needed to address coping strategies for dealing with the loss of ability to walk (see Psychosocial Management).
Rehabilitation input will continue to focus on range of movement and independence (see Rehabilitation Management). If joint tightness becomes too much of a problem for physiotherapy interventions, assessment and input from orthopaedic specialists may be necessary. It is important to make sure that there are appropriate wheelchairs with supportive seating to promote continued independence and comfort.
Ongoing management of steroid treatment is important at this stage, with attention to the specific regime and dose used (see Neuromuscular Management) as well as attention to side effects. Twice yearly assessments to monitor strength and function are important. Continued attention to weight control needs to take into account any tendency to be under or over weight with appropriate intervention if there is a problem (see Gastrointestinal Management).
From a respiratory and cardiac point of view (see Pulmonary Management and Cardiac Management), the low risk of obvious problems remains but ongoing assessment of the heart and breathing muscles is necessary. Echocardiogram and other types of tests should be done annually from the age of 10. The doctor will recommend interventions if there are any changes observed on the echocardiogram.
Information based on consensus statement (published in January 2010)