The Big Picture in Adulthood
Adolescence is a hard time for just about anyone: the physical, emotional and cognitive changes, the budding independence, the looming future.
Now, let’s add Duchenne Muscular Dystrophy to the mix.
Included with this article is a chart from the American Association of Pediatrics’ webinar, Transitioning and Palliative Care for Individuals with Duchenne MD, with presenter Christina Trout. It illuminates the additional layers of the adult with Duchenne must navigate on top of an already challenging time.
- Relationship with others – develop skills to connect with others to manage own affairs (social outings, appointments), work towards desired level of autonomy and independence
- Education or employment – plan early for future vocation, consider classes online vs on campus, contact campus programs for students with disabilities, enlist employment or vocational planning resources
- Activities of daily living – explore funding and benefits for care, learn how to hire and train personal care assistants, endure respite for family caregivers, consider need for guardianship or conservatorship
- Health care – transition from pediatric to adult health care, move from family-centered to patient-centered interactions with providers, discuss age related changes in health care benefits, assess the need for durable power of attorney for health care
- Transportation – foster independent driving with vehicle modifications, modify family-owned vehicle, investigate accessible public transportation options
- Housing – examine where to live (family home or elsewhere), modify home for accessibility and safety, use assistive technology
Clearly, this time of life can be daunting for the families and individuals with Duchenne, but it is also a unique opportunity for personal growth.
Our adults with Duchenne are proving overwhelmingly that a muscle wasting disease can transform someone into an incredibly strong adult.