Neuromuscular management - maintaining strength and function

What assessments should be done and why

Your son should have regular checkups with a specialist physician who has the expertize to monitor how things are going and to understand if there is anything unusual that might need additional evaluation. This is important in order to make decisions about new treatments at the most appropriate time and to anticipate and prevent problems to the maximum extent possible. It is recommended that your son sees the physician every 6 months and the specialist physical therapist and/or occupational therapist about every 4 months if possible.

Tests used in different clinics to follow individuals with DMD may vary. The most important thing is that there is regular review so that interventions can be properly monitored. This regular assessment should include tests that help show how the condition is progressing, including:

Strength

Strength may be measured in a number of different ways to see if the force that can be generated at specific joints is changing.

Range of joint motion

This is done to monitor if contractures or joint tightening is developing and to help to guide what stretches or interventions will be most helpful.

Timed tests

Many clinics routinely time activities such as the time to get up off the floor, time to walk a certain distance, and time to climb several steps. This gives important information on how the condition is changing and how it is responding to treatment.

Motor function scales

There are a large number of different scales, but your clinic should routinely use the same one to monitor the condition in a systematic way. Different scales may be needed at different times.

Activities of daily living

This allows the team to tell if some additional help might be needed to assist independence.

Important facts to remember

  1. Because your son does not have dystrophin, his muscles will gradually get weaker.
  2. Some types of exercise and getting tired can make muscle damage worse.
  3. The physician understands the progression of muscle weakness and can help your son get ready for the next step.
  4. It is important for the physician to know how your son’s muscles are working so that they can start the right therapy as early as possible.

Information based on consensus statement (published in January 2010)