PPMD's Living Duchenne

This season of Living Duchenne digs into the rich topic of caregiving and Duchenne. On this episode our host, Rachel Poysky, chats with Duchenne friends and experts, Rachel Callander (facilitator for PPMD's Lighthouse Workshops) and pediatric neuropsychologist from Children's CO, Paige Naylor, about their insights on dynamics that can contribute toward a caregiver growth mindset. Listen in on this important, wide-ranging conversation around areas such as addressing over functioning, finding "micro joys," and understanding the connection between your child's independence and your own as a primary caregiver.

Welcome to another episode in our series on Caregiver Burnout. How do you ask for help--especially if you're navigating a clinical trial experience? What does it mean to put a little more focus on yourself? How does a Duchenne caregiver structure their day? These are some of the questions we explore in our candid conversation with our host, Rachel Poysky, and guests Clare Perin and Susan Caldwell. These moms and caregivers of kids with Duchenne bring their insight and honesty to fielding the busy, ever-changing experiences in a Duchenne family.

Join us for another great episode in our Living Duchenne podcast series. This season we are bringing folks together to talk about caregiver burnout. Our fantastic host, Rachel Poysky, sits down with Duchenne Mom, Joanna Johnson, for a spirited and candid conversation about caregiving in the midst of raising a young adult. Rachel and Joanna dig into recognizing the signs of burnout, setting boundaries and limits for yourself with your family, and getting clear on what you need that is 100% FOR YOU (and letting the rest of the household know it). Joanna brings humor and important perspective on her caregiving experiences to date that are sure to resonate with others no matter where you are on your Duchenne journey.

Welcome to our third episode in this season's PPMD podcast, Living Duchenne. Our topic is Raising and Independent Child. We welcome Adam Wechsler, a 29-year old man living with Duchenne, and Gretchen Agans, mom to Liam, a young adult living with Duchenne to talk about building independence and purpose in this time where young people are transitioning into early adulthood. Our host Rachel Poysky talks with Adam and Gretchen about remaining open to the many opportunities that exist for young men living with Duchenne--higher education, service, volunteerism, entrepreneur possibilities, consulting, and so much more. Join us and share to invite others to the conversation!

Please join us as we continue our discussion on Raising an Independent Child: The Middle Years. Our guests include Colleen Labbadia and Kate Vanderweele sharing their experiences parenting in those adolescent and early teen years (middle school and high school ages) with a mindset of preparing their children for a future with independence. Listen in on this great conversation where Colleen and Kate talk through successful practices to build ownership, self-advocacy, and incorporate "low stakes" situations that empower their young boys to autonomy.

Welcome back to PPMD's podcast, Living Duchenne! This season we're discussing Raising an Independent Child. The path to purpose and independence begins at an early age for every individual. For those on the Duchenne journey this means tapping into creativity, community, and resources. This episode finds guests Christopher Bennett and Amy Ridolphi talking with our host, Rachel Poysky, about building a strong foundation for empowerment during those grade school and pre-adolescent years. Both guests share practical methods such as introducing chore responsibilities and socializing habits along with mental and emotional frameworks that benefit the entire family. Join us for a fantastic conversation!

We're rounding out Season 6 of Living Duchenne talking about the impact of Duchenne behavior on siblings. This conversation features fantastic guests, Colleen Labbadia, a Duchenne mom and counselor, and Hannah Divin, an older sibling of a brother with Duchenne. They join our host, Rachel Poysky, to share honest, heartfelt, and humorous perspectives on the world seen and experienced through a sibling's eyes. In this episode we chat about having open discussions about your sibling's needs, feelings, and experiences; making sure there's room for everyone's emotions; and finding the right ways to acknowledge that "everybody has a 'hard'" and it's important to keep an open, fluid dialogue about each family member's unique relationship to Duchenne. Join us!

Join us for another great conversation on Living Duchenne in our season focusing on the intersection of behaviors and the Duchenne experience. In this episode, our host Rachel Poysky chats with Dr. Felix Wu, PhD in Industrial Organization Psychology who also lives with Duchenne. Dr. Wu gives candid insight into the behaviors he's grappled with as his Duchenne has progressed. He talks about "understanding the why" behind various behaviors--recognizing that factors such as frustration, anxiety, grief, and insecurity (on both the part of parents and family members) play roles in the Duchenne dynamic as much as biology and neurology.

On this episode of Living Duchenne, host Rachel Poysky is joined by her husband, Dr. James Poysky, a Pediatric Neuropsychologist, for a conversation about insights into the connections between the Duchenne brain and challenging behaviors. Join us for a wide-ranging discussion between two Duchenne parents about managing expectations, bringing more transparency to the neurological nuances of Duchenne, and finding the right resources and practices that work for your family. From the cast: "Neurologically things are harder for them, and we have to take that into account." -James Poysky.

Join us for a new season of Living Duchenne! In these episodes our host Rachel Poysky sits down with guests to talk about understanding and normalizing behaviors related to the Duchenne experience. In our first episode, “It Just Might Look a Little Different,” guests Jessica Rownd and Dawn Rezkalla discuss the challenges of behaviors impacting daily life with Duchenne. They offer practical strategies that have empowered their sons and improved their families’ quality of life. From educating the educators to finding support and giving themselves room to breathe and innovate as parents doing their best, Jessica, Dawn, and Rachel share valuable insights, humor, and tips every family can use!

For a lot of people fall is synonymous with football and for those in the muscular dystrophy community, that means Coach To Cure MD. Parent Project Muscular Dystrophy's nationwide initiative partners with the American Football Coaches Association (AFCA) to educate about Duchenne and Becker and raise funds for research. Every September high school and college coaches sport the “Coach To Cure MD” patches at games and talk about ways to support individuals with Duchenne at press conferences and other media events. These coaches, along with their teams, also forge special connections with families and individuals with Duchenne both on and off the field. In this episode, we hear from Jack, Brian, and Karen Wolf and Coach Keith Otterbein of Hillsdale College about their enduring friendship sparked through this incredible program.

Dystrophinopathy is not exclusive to males. Though rare, women can also be affected by the disease, which raises different kinds of questions, challenges, and discoveries. On this episode, Deb Jansen and Mariana Livingston join host Rachel Poysky to offer their thoughts and insights about the complexities of the way the disease manifests in women and what we can do to raise awareness and provide more support for women living Duchenne.

The good news: there is no wrong way to practice self-care. The even better news: self-care comes in all shapes and sizes; it’s infinitely customizable by you, for you! Our host Rachel Poysky sits down with Duchenne moms, Betty Vertin and Jill Castle for some candid conversation about the many paths to self-care empowerment.

Whether you’re a woman who is a carrier for Duchenne or are close to a family member or loved one with a carrier status, it’s important to put physical and emotional wellness in focus. On this episode, we’re joined by Trina Stelly and Mindy Cameron who talk candidly with host, Rachel Poysky about their experiences navigating a carrier status and what they find both rewarding and challenging about taking control of their health.

From siblings to grandparents to aunts and uncles and partners–a Duchenne or Becker diagnosis impacts across every family member, many of whom take on their own type of caregiving roles. Our host Rachel Poysky sits down with guests Susan Samuelson, Alyson Teal, and Hilary Becker who offer their unique insights on caring for a loved one with Duchenne and Becker, supporting primary caregivers, and sharing their own struggles and discoveries as people who “live Duchenne and Becker” from a different perspective.

We're getting excited for PPMD's 2022 Annual Conference with this special BONUS EPISODE of Living Duchenne about making the most out of YOUR Conference Experience. Join our host Rachel Poysky along with special guests, Jessica Rownd, John Killian, and Linda Cripe as they share their insights and stories on what makes conference a positive, empowered, inspiring event for the entire family.

Ralph Waldo Emerson wrote: “It is a happy talent to know how to play.” Fun, joy, laughter, letting loose, and taking breaks from our routines to relax and play are all vital parts of physical, mental, and emotional health and wellbeing. On this episode Rachel sits down with Duchenne parent Colleen Labbadia and Physical Therapist Claudia Senesac to chat about the importance of making time for family fun and how to spot creative opportunities to add more play into your day.

Let’s face it, sometimes taking a yoga class or finding time to try meditation is not simply realistic in a family with Duchenne. Why follow the wellness rules when you can simply make your own? Duchenne parents Tiffany Herring and Kindann Fawcett join Rachel to talk about accessible, reasonable ways to incorporate nutrition and physical activity into your busy routines. Listeners will hear creative solutions by real people that they can easily customize to fit their unique family dynamic.

“You’re doing great!” “Keep going!” “You’ve got this!” We all see the cheery, inspirational posts on social media, but maybe you find yourself thinking: “I don’t have this at all.” Not only is that okay, but guess what? You’re not alone. On this episode, Rachel leads a refreshing, lighthearted conversation about managing expectations when things look or feel less than “perfect.” Guests and Duchenne parents, Jessica Divin and Alisha Taylor, join Rachel for some candid talk and humorous stories about navigating roadblocks and finding the lighter side of “parenting fails” that make us human.

For some, counseling and therapy may seem a bit mysterious or even a little scary or overwhelming. The good news–it doesn’t have to be! On this episode, Rachel chats with guests Lauren Fritz (Duchenne parent and licensed counselor) and Maria McDonnell (Duchenne parent) as they share their individual experiences with counseling and how it has positively impacted their mental health and wellbeing.