Family, Friends and Duchenne

The Adult with Duchenne ?? Common DMD Barriers in Adult Relationships Many of us are familiar now with the fact that Duchenne Muscular Dystrophy affects far more than just muscles. The lack of dystrophin affects the brain, too, creating common patterns in behaviors, cognitive functioning and emotional states. While these effects on the brain seem to wane as the individual with Duchenne ages, they are still prevalent enough to interfere with creating - and keeping - human relationships. Whether you're an adult with Duchenne yourself, or your loved one has Duchenne, the attached article is a must read. It can help both the adult with Duchenne identify ways to achieve the relationships he or she wants, and it can also help extended family and friends understand their loved ones with DMD a bit better. https://lnkd.in/e7yXFQ-c --- For more ideas about relationships and adults with Duchenne:? https://lnkd.in/g29FvJuq... -Family, Friends and Duchenne https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

Children with Duchenne ?? An Environment of Predictability While Duchenne is widely known as a progressive muscle disease, its effects don’t stop there. It also affects the brain, emotions and behaviors, too. Understandably, children with Duchenne often behave in ways that are socially unexpected. They might fixate on ideas, avoid eye contact, interrupt repeatedly, not talk at all, meltdown when changing activities... the list goes on. It’s not purposeful and it's not manipulation. And when adults respond with rewards, punishments, or even threats, the situation predictably worsens. One of the most effective ways that we can support these kids is with an environment that provides more predictably and feelings of safety. It takes a little bit of thinking, problem solving, and planning – but it can happen. Learn more here: https://lnkd.in/g6p5M-iQ --- for more about supporting children with Duchenne:? https://lnkd.in/esdNwrif -Family, Friends and Duchenne https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

Embracing the Individual with Duchenne: ?? Kids Have Questions About Duchenne, Too “Miss Jones… how come Robert sits a lot during recess? Why doesn’t he want to play with us?” “Mom, why does Pete yell and scream so much when things don’t go his way? Is he spoiled?” --- Just like adults, kids want to ask questions about Duchenne, too. This BrainPop video on YouTube is one of the many outstanding kid resources to start those Duchenne conversations with our younger generations. The video covers a wide variety of Duchenne topics – from Gower’s maneuver to fatty deposits in muscles to the power chair to basic genetics – in an interesting, kid friendly way. Any of the topics it covers could start great conversations between a child and an adult. Kids have questions, so let’s talk with them. Let's talk about Duchenne. https://lnkd.in/eC-xGUxQ --- For more about childhood and Duchenne: https://lnkd.in/gKri8_Tp ?- Family, Friends and Duchenne https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

Duchenne Family Dynamics: ?? The Female Faces of Duchenne Duchenne Muscular Dystrophy isn't just a male's disease. It's a female's disease, too. Many moms of children with Duchenne are carriers. In fact, many of them are actually manifesting carriers to varying degrees. They have to manage not only the declining health of their son(s), but also their own complications as well. It's a lot. A whole lot. Definitely way too much sometimes. The link below explains more: https://lnkd.in/g59cZrib --- For ways to support the Duchenne family:? https://lnkd.in/g-2gg_sk -Family, Friends and Duchenne https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

Holidays & Duchenne:?? Social Tips for Duchenne Inclusion As those with Duchenne already know, DMD is much more than just a muscle disease. For many individuals with Duchenne, the social aspects of inclusion are the part they struggle with the most. Society itself just isn’t designed to accommodate those living with Duchenne. As we wait for society to change, it’s up to the individual, their families, and their friends to do everything they can to ensure their social inclusion. Attached is a list of articles that explain social roadblocks for individuals with Duchenne, and ways to navigate them. Whether you're extended family and friends, or you're a Duchenne family looking for new and creative tips, this link is for you. learn more here: https://lnkd.in/e8Wcfz7R --- for more ways to support the Duchenne family: https://lnkd.in/eCm3Anmr -Family, Friends and Duchenne https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

We are always here... ?? ?? https://lnkd.in/eBuawCRw

Loss, Grief and Duchenne: ?? A Deep, Collective Sorrow Our Duchenne community is incredibly close. In fact, we often call ourselves a family. When one child dies, the news is shared and we grieve. We all grieve deeply in complex ways. Lauren Fritz, mother of two sons with Duchenne, explains the situation well, "One part of being in the Duchenne community is coming to know other parents and families who travel this journey. This offers a beautiful sense of camaraderie and support. It also means that when one of our boys or young men dies, we share in a deep, collective sorrow. This has been happening often recently... I think about what words can be offered up at times like these. This isn’t about the fervent development of research, or the insistence of ever-burning hope. This is something different..." read more here: https://lnkd.in/gwtH75YX --- for more about loss, grief and Duchenne: https://lnkd.in/gR3AbBpw... -Family, Friends and Duchenne https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

Personal Duchenne Stories:??? Big Sister Zia In 2021, my good friend Melissa Vanderburg and her family received the diagnosis of Duchenne for their toddler, Jericho. Since then, Melissa's whole family has been adjusting to the news. Her oldest daughter, in particular, Zia, has been grappling with it for some time. I asked if Zia wanted to share her experience with us and she said yes. Below is the Duchenne story of 15-year-old Zia in her own words. https://lnkd.in/eM3nhW8N --- For more Duchenne Stories, visit: https://lnkd.in/eVb_pTUt... - Family, Friends and Duchenne? https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

Duchenne Stories ?? Like a Hard Level in a Video Game What may have started out decades ago as a frivolous way to pass a few hours, has actually turned into a vital lifeline for many adolescents and adults with Duchenne. Gaming has become an outlet for competition, socializing, and participation in pop culture. It's a pretty reliable conversation starter with people outside our DMD community. In some cases, our individuals with Duchenne can even enjoy financial income from gaming. And - perhaps even the most important reason - a temporary escape from the reality of Duchenne. In the link below, 15-year-old Carlito Jacobus explains how gaming changes him "from the outside in." https://lnkd.in/e4UQ4DNY --- For more about adolescence and DMD: https://lnkd.in/eyXM-ywt - Family, Friends and Duchenne? https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4

The Adult with Duchenne ?? The Next Best Thing Oliver Groom is 31 years old with Duchenne Muscular Dystrophy. He lives independently in New Zealand, loves music and his cats, too. A funny, warm, and determined individual, Oli has personal experience with employing and managing carers, living independently, traveling with a disability, dealing with hospital appointments and life with DMD. One of our favorite quotes from Oli is, "Duchenne is currently incurable but knowledge is the next best thing."?Brilliant. Thank you, Oli. For more of Oli's story - in his own words https://lnkd.in/g8DSdsas --- for more about living as an adult with Duchenne? https://lnkd.in/g5qCkZqg -Family, Friends and Duchenne https://lnkd.in/gBUF4bzp https://lnkd.in/eqJZXy5a https://lnkd.in/egJPUDt4