Understanding and managing healthcare and the healthcare system can be daunting for all of us. Attitudes of both providers and patients toward healthcare have experienced significant changes over the past few decades, shifting away from a focus on providers addressing problems as they arise, to more of a partnership and a shared decision-making process to maximize function, well-being, and reduce potential morbidities [1].
A bold and contemporary discourse of the intersection of disability studies and queer studies
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Wouldn’t it be great if inclusive, accessible playgrounds were in every community for all to enjoy? Although progress is being made in certain areas, there is a lot more work to be done to literally level the playing field and help communities and designers understand what makes an inclusive accessible playground and why they are important for people of all abilities.
An approachable guide to being a thoughtful, informed ally to disabled people, with actionable steps for what to say and do (and what not to do) and how you can help make the world a more accessible, inclusive place.
LittleWins harnesses the power of community to empower people with disabilities with the tools they need to thrive! From buying, selling, and donating medical equipment and supplies, to obtaining needed information and connecting with others – LittleWins is the one-stop community resource for families, parents, caregivers, in-home nurses, and all people with disabilities.
Judy Heumann’s candid, intimate, and irreverent memoir about resistance to exclusion, invites readers to imagine and make real a world in which we all belong.
Author Andrew Soloman proposes that being exceptional is at the core of the human condition—that difference is what unites us.
Almost all of us can vividly conjure up an episode of being bullied that occurred in our own lives. Hopefully, fewer of us will have memories of being the bully. These experiences and remembrances often are formative, perceived as hurtful, and can have a long term impact on our health and well-being. For me the memory of being the center of attention in a negative way never quite fades, but with age, the perspective changes to a challenge.
Written by cerebral palsy specialists, Drs. Peter Rosenbaum and Lewis Rosenbloom, this book gives a comprehensive, yet accessible and readable overview of cerebral palsy across the lifespan.
Written for fifth and sixth graders, this is the story of a young girl with cerebral palsy who utilizes a communication device to interact and participate.
Comedian Zach Anner opens his frank and devilishly funny book, If at Birth You Don't Succeed, with an admission: he botched his own birth. Two months early, underweight and under-prepared for life, he entered the world with cerebral palsy and an uncertain future.
Individuals with Cerebral Palsy frequently participate in Adaptive Sports and Therapeutic Recreation programs. Though there are often many similarities in programs and frequently the terms are used interchangeably, there are differences that are highlighted here.
Written for both clinicians and families, this comprehensive guide to complex cerebral palsy utilizes the ICF to organize and guide the subject matter in order to assist both clinicians and families to maximize participation for those who are impacted more significantly by cerebral palsy.
Don't miss Part 2 of this very special podcast series when podcast host Cynthia Frisina dives deeper with Michael Kutcher into his life growing up with cerebral palsy, his "coming of age" as the twin brother of actor Christopher "Ashton" Kutcher, and what Michael is doing now with his new "diffability" concept and continued advocacy work on behalf of people with disabilities and organ transplants recently featured in Forbes Magazine https://www.forbes.com/sites/karlmoore/2021/07/08/michael-kutcher-on-turning-obstacles-into-opportunities/?sh=6ed0e70f722f
For three editions now, a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children have shared vital information through this authoritative resource for parents, who will turn to it time and time again as their child grows.
Frame Running is becoming increasingly popular as a recreational and competitive sport for individuals with cerebral palsy across all GMFCS levels. Tune in to learn more!
A parent's perspective as she recalls the moment she realized that a wheelchair meant freedom for her son and not a barrier to his progress.
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does.
In this episode, Mary Gannotti, PhD, PT, discusses fitness, health and function across the lifespan for individuals with cerebral palsy.
In this first episode, listeners will meet the host, Jen, learn about her background, her son, Bower, and the reason for creating this podcast. Enjoy!
Wonder what it's like to grow up as Michael Kutcher? On this episode of "Let's Talk CP" Michael Kutcher and host Cynthia Frisina dive deep into Michael's childhood and journey to adulthood - including the good, the not so good and the very surprising. You won't want to miss what Michael has to say in this very candid and intimate conversation.
There are multiple factors that impact bone health, including birth weight, nutrition, medications for seizures and/or reflux, genetics, and physical activity. Targeted exercise to improve bone health in childhood can be sustained into adulthood, and childhood is the best time to promote bone health.
There are many kinds of physical activities that people with cerebral palsy can participate in – for both ambulatory people as well those who use various mobility devices. Knowing just what activities are right for whom can be tough, this article helps to sort that out.