by: Parent Project Muscular Dystrophy
It’s important to ensure that even within the context of Duchenne/Becker, kids are doing things that kids should be doing, adults are doing things that adults should be doing, and families can lead the lives they want to lead. Together with PPMD, your community, and your care team, it’s all about figuring out how we can make that happen.
During the “Enhancing Social Experiences” session at PPMD’s 30th Annual Conference in June 2024, panelists shared real life examples of ways individuals living with Duchenne and Becker can participate in a variety of social experiences. The panel, which consisted of parents, an individual living with Duchenne, a recreational therapist, and a physical therapist, shared tips on how to help families get involved in different activities that match their interests. From soccer, to skiing, to musicals and marching band, the key takeaway was that anything is possible!
The Little Things Matter
During the “The Little Things Matter“ session from PPMD’s 30th Annual Conference, experts and community members discuss the significant impact of small, everyday actions in the lives of those living with Duchenne and Becker. The session highlighted practical tips and strategies for improving quality of life, emphasizing the importance of consistent care, emotional support, community involvement, and having fun in order to make life work for you and your family. Speakers shared personal stories and professional insights about incremental changes like home modifications, building relationships and seeking connection, and finding activities and hobbies you enjoy that can collectively lead to substantial improvements in quality of life.
PPMD For You
Facing unknowns can often be intimidating. PPMD is here for you with personalized support for any questions or challenges you may have through our PPMD For You program. The Enhancing Independence & Social Experiences appointments provide an opportunity to discuss considerations for living independently, life after high school, finding a job, navigating relationships, involvement in social activities, and more for yourself or your child with Duchenne or Becker.
For those with questions about practical aspects of planning for the future and facilitating independent living, the Durable Medical Equipment & Home Modifications appointments offer one-to-one guidance on necessary equipment and all kinds of life hacks for daily living.
Schedule a PPMD For You Appointment
Helpful Resources
PPMD’s Community Resource Center is intended to be a one-stop resource for every child, adult, and family living with Duchenne and Becker. Here you can find some of our favorite daily life resources and community organizations, as well as resources specific to your state.
Inspired by Angela Knight, a PPMD advocate and Duchenne mom who lost her battle with cancer in 2020, PPMD Knight Hacks has all of the tips and tricks you need to make everyday life with Duchenne and Becker a little bit easier.
PPMD’s Living Duchenne podcast brings together community voices to talk about navigating the Duchenne and Becker experience. Over the course of six seasons, the podcast takes a deeper dive into topics that impact Duchenne and Becker patients and their families on a daily basis.
