Late Non-Ambulatory (young adult/adult)
In the late non-ambulatory phase, core strength and upper limb strength may weaken, making function and maintenance of good posture increasingly difficult.
It is important to discuss with your physiotherapist what types of stretching, exercises, and equipment can best support your desired level of independence and function. An occupational therapist on your rehabilitation team can help with activities such as eating, drinking, using the bathroom, and transferring to and turning in bed, if needed. Assistive technology evaluations can also be conducted to assess opportunities for extending independence and safety.
You should continue to discuss steroid regimens, nutrition, puberty, and weight management with your neuromuscular care team. Current recommendations encourage the lifelong continuation of steroids to preserve respiratory and upper limb strength and function.
BONE HEALTH AND HORMONES:
Close surveillance of bone health should continue throughout your lifespan. Bone problems may lead to issues with pain, and should be addressed with your neuromuscular care team.
HEART AND BREATHING MUSCLES:
Monitoring of heart and lung function at least every 6 months is recommended, of heart and and often more intensive investigations and interventions may need to be implemented.
The palliative care team continues to be important at this stage. As mentioned above, this team includes medical providers who are focused on helping you achieve your highest quality of life, providing relief from pain and discomfort, and helping ensure that your life goals match your treatment choices. While palliative care is sometimes confused with“end of life” care, the palliative care team will help you meet challenges at every stages of your diagnosis, and will be able to help you and your family with many types of transitions across your lifespan. All people, with or without Duchenne, need to make decisions around emergency care – what they would like done to their body in an emergency, what they might not want done, who will be their medical power of attorney to make medical decisions if they cannot.
LIVING AS AN ADULT WITH DUCHENNE:
A full and productive life as a independent adult living with Duchenne requires planning. Developing a plan to transition from adolescence to adulthood should begin at least by age 13 or 14. Your personal transition plan should be based on the expectations and goals that you have visualised for your future. Your transition plan should include considerations for education, employment, housing, transportation, and mobility within the community, and transferring medical care from paediatric to adult providers (this may not be needed if your medical providers are able to continue to care for adults living with Duchenne). Regardless of whether your medical care/providers change, your resources and benefits will be impacted as your move from childhood to adulthood. Planning for these changes should include you, your family, your school, and your health care teams. This process, and all that it entails, is discussed in the section Transition of Care. Living as an adult with Duchenne is more expensive than living as an adult without Duchenne. You will require resources to support the assistance needed to reach your personal goals. Your neuromuscular team will help you to explore available resources and your eligibility to receive them, and the team will help you to navigate local and national systems of support. It is also important to continue to find creative ways to stay connected with friends at this stage, especially as your life starts to change. While many people do not experience psychosocial problems, some adults with Duchenne may experience anxiety or depression that benefit from treatment. Screening for anxiety and depression should happen at each neuromuscular visit. If you have issues with anxiety or depression, they should be treated early and appropriately.