Care & Support Interventions

  • A neuromuscular care coordinator is a crucial member of the team and can facilitate referrals to behavioral health clinicians, social workers, counsellors, and palliative care specialists. If your team does not include a NM care coordinator, ask who you should contact for questions/concerns/emergencies between appointments
  • It is important for you to help educate your school personnel about Duchenne, so that they can be informed about your diagnosis and help to facilitate your access to everything that you need for your education, social participation, and future education and employment
  • A special individualized Education, Health and Care Plan (EHCP) should be developed to address any potential learning problems that you may have and to modify activities that might otherwise prove harmful to your muscles (e.g. physical education), further reduce your energy or increase your fatigue (e.g. walking long distances to/from lunch), impair your safety (e.g. playground activities), and address your accessibility issues
  • Promoting self-advocacy, independence and involvement in decision making (in particular, as decisions relate to medical care) and getting used to assistants (other than parents) providing your care is necessary and of significant importance to promote autonomy (see Figure 13)
  • Developing social and learning skills will make it easier for you to find a job and be part of daily life in adulthood
  • In addition to pain management (see Box 4 in section: Rehabilitation Management – Wheelchairs, Seating and Other Adaptive Equipment), palliative care teams may also be able to provide you with emotional and spiritual support, assist your family in arranging respite care if needed, clarifying treatment goals in making difficult medical decisions, facilitate communication between you and your medical team, and address issues related to grief, loss, and bereavement

If you are having issues related to anxiety or depression, you may benefit from the use of prescribed antidepressants. These medicines can be prescribed and monitored closely when these issues for which they are appropriate have been specifically diagnosed.