PPMD recently launched “Connect Community Chats” to provide an opportunity for families and individuals living with Duchenne to come together virtually in a small group to talk about important life topics. The most recent discussion around Accepting Help was led by Adith Thummalapalli, a 25 year old from Maryland, living with Duchenne and the Vice President of PPMD’s Adult Advisory Committee (PAAC), and Joanna Johnson, Pennsylvania Connect Coordinator and mother of Elliott and Henry, who both have Duchenne.

Adith and Joanna kicked off the conversation highlighting their experiences with receiving outside help. They shared stories and tips about incorporating PCA’s and other caregivers into the routine starting at a young age and continuing into college.  There were several themes and key points of advice provided to the group.

• “Start young, start small”

• • • Using outside caregivers to help with children as young as elementary school allows children to slowly get used to having others help with daily activities.  Starting with small activities like getting ready for school or helping to get on or off the bus prepares children for more involved help at a later date.

• Set expectations up front

• • • It’s okay when you hire someone to tell them what you/your child needs. Creating expectations in the beginning will help both parties in the long run. It’s important to be open and honest, but respectful and kind.

• Use your Social Worker 

• • • The social worker for your neuromuscular clinic will be the most helpful resource in this journey. They can help you understand your state’s benefits and what help you may be eligible for. You can always ask to speak to a social worker during your clinic visit, or follow up with a phone call for more information. 

• Be creative when searching for aides

• • • Finding aides can be a challenge. Many families have used college students, particularly those who are enrolled in colleges of health professions. If your state requires you to use an agency for hiring, many have found the person they wanted to hire through their own search, and then directed them to the agency.

• You don’t have to do it all

• • • It’s okay to ask for help. Parents often feel guilty when they reach out for help, but by creating a support network and using the resources out there, it can help parents focus on truly being the best version of themselves for their children. 

Asking for, accepting, and finding help is not always easy. But there are ways it can be done and many resources out there to help. If you are struggling with finding help or understanding your benefits, please reach out to careteam@parentprojectmd.org. We also encourage families to join their local PPMD Connect group for regional based support from other families in the Duchenne and Becker community.