Breakthrough Parenting for Children with Special Needs challenges families and professionals to help children with special needs to reach their full potential by using a proven motivational, how-to approach.
An incredible story of Johnny Agar, born with cerebral palsy and whom doctors thought would never walk, overcoming the odds to compete in Ironman triathlons.
In this exhilarating and inspirational memoir, the first man with cerebral palsy to climb Mount Kilimanjaro and complete the brutal Ironman competition shares the exhilarating adventure that led to his achievements—redefining our ideas of normal and proving that life is never truly limited for any of us.
As a child, John Quinn had a dream of a naval career despite his affliction with cerebral palsy.
In this groundbreaking book, Dr. Karen Pape tells the story of how some children with early brain damage astounded everyone around them.
What is neuroplasticity? Is it possible to change your brain? Norman Doidge’s inspiring guide to the new brain science explains all of this and more.
Nineteen people from across the globe, ranging in age from twenty to seventy-plus, tell their stories of living and thriving in diverse fields — in sport, the arts, medicine, business and more. With refreshing frankness, they share their successes along with their struggles — grit is the one characteristic they all have in common.
Born premature Matt Levy was thrown into the world and given two choices: to sink or to swim. Beating all the odds, he emerged as a Paralympic Gold Medallist, public speaker, and a business manager–all due to a mindset shift he experienced fighting for life at the bottom.
"Do you know what grit means? Well, my mom says I have it. Having grit means you keep working toward your goal even when it's hard. Someone who has grit is fearless and unstoppable." - Frankie
How would you feel if you weren’t allowed to make decisions about your life? What if someone had the power to tell you where to live, who to spend time with, and what to do? What if that person had control of your money and health care? Isn't that hard to imagine?
Do you need a way to discuss Cerebral Palsy with your child, friends, family, or caregivers? Xander explains about cerebral palsy, what causes it, the 4 types, and how it affects him and his friends who also have cerebral palsy. He also shows how he is an important member of his family and how what HE can do MATTERS.
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].
Nuestros discusiones educacionales continuó con un grupo de expertos el Jueves 25 de Marzo 2021. Este evento virtual contó con un panel de discusion multidisciplinario.
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
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.
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.
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.
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.
Can there be a genetic cause of Cerebral Palsy in some cases? Let's Talk CP host, Cynthia Frisina talks with Dr. Michael Kruer about this topic and his ground-breaking research in Part 2 of a two-part discussion about the possible genetic causes of CP. When Michael Kruer was in medical school, he knew he wanted to work with children. With advancements in gene therapy opening up incredible opportunities in neuroscience, he realized he could be a part of something much bigger than himself and give children affected by movement disorders like cerebral palsy hope that didn’t seem possible just a few years ago.
On this episode I talk with two of the world’s leading researchers… Dr. Madison Paton and Dr. Iona Novak on stem cell treatment for cerebral palsy. Stem Cells have been a hot topic in Cerebral Palsy for at least 15 years now, with many parents and researchers hoping that at the least, stem cells will lessen the impact of CP and at most hold the key to a cure. Dr. Paton and Dr. Novak will share their insider knowledge into this subject and help us sort through the hype and so we can hold onto our hope.
On this episode with Dr. Amy Bailes, we discuss the Gross Motor Functional Classification System (the GMFCS), the Gross Motor Functional Measure (the GMFM), and the corresponding motor curves. The GMFCS is an important classification system that is relatively easy to understand and it helps create a shared language and framework for understanding a person with CP’s physical function. This can be very helpful for patients, families and providers of all sorts, especially as it relates to both and acceptance and understanding of the diagnosis and family-centered shared decision making.
Our educational series continued with a panel of experts from Nationwide Children's Hospital on Monday, March 29th, 2021. This virtual event featured a multi-disciplinary panel discussion.
Our educational series continued with a panel of experts from Scottish Rite for Children and the University of Texas Southwestern Medical Center on Thursday, March 25th, 2021. This virtual event featured a multi-disciplinary panel discussion.
Drooling is an important problem for many individuals with CP and there are a number of interventions available to treat symptoms. If an individual with CP or their caregiver have concerns about drooling it is important to discuss with a health care provider. Care pathways such as the AACPDM pathway can be a starting point for shared decision making. In all cases, working together as a team is important in choosing the best alternative. Children and adults with CP may have trouble with drooling, or saliva management. In the medical world, drooling is referred to as sialorrhea. Saliva plays an important role in eating but also can interfere with airway clearance and breathing, as well as social participation. When drooling has this kind of impact it becomes important to consider intervention.
If you're interested in learning more about what is involved with genetic testing and how a visit with a genetic counselor might be helpful, join Cynthia Frisina, the host of Let's Talk CP, as she dives deep with licensed genetic counselor, Danielle Lemke and they talk about what genetic counseling really is, how it can help and what it might be used for as it relates to potential genetic causes of cerebral palsy.
