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.
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.
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.
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 1 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.
Wondering what to expect if your child has an appointment with a pediatric orthopedic surgeon? Still confused about the different types and levels of cerebral palsy? Dr. Hank Chambers, who is also the father of an adult son with CP, talks about different considerations for different ages and stages of a child with cerebral palsy.
Preparing yourself and your child well for medical appointments means a better experience for everyone. Our “Let’s Talk CP” podcast series continues Cerebral Palsy Foundation host, Cynthia Frisina talking with Physiatrist Dr. Lisa Thornton about cerebral palsy, spasticity and what to expect at many kinds of medical appointments. Questions include what to expect when procedures like botulinum toxin injections are recommended, how to talk with a clinician when “little ears” are listening, and much more. This episode is made possible with the support of Ipsen Biopharmaceuticals.
Our “Let’s Talk CP” podcast series kicks off with a great conversation about what questions to ask your child’s clinician when your child has cerebral palsy. How should you prepare for a medical appointment? What questions should you ask? Should you get a second opinion? Join Cerebral Palsy Foundation host, Cynthia Frisina as she shares candid talk, lessons learned and great advice with fellow moms, Wendy Sullivan and Jennifer Lyman. This episode is made possible with the support of Ipsen Biopharmaceuticals.
Welcome! The Cerebral Palsy Foundation is connecting the Cerebral Palsy community one podcast at a time with “Let’s Talk CP” - the new podcast series bringing you education, conversation, support and much more on a variety of topics. Join Jason Benetti, White Sox and ESPN sports announcer, and friends, as we get real with families, clinicians and researchers asking the questions you want to know about your CP journey. We’re all in this together.
Spasticity is usually caused by central nervous system injuries, such as brain injuries or spinal cord injuries. Spasticity is a little different from stiffness.
This podcast is a place for conversations with experts about issues related to cerebral palsy that affect health, fitness, function and participation. We will cover a range of topics including: treatments and therapies, nutrition, neuroplasticity, genetics, exercise and fitness, adaptive sports, accessibility, and new trends.
Cerebral palsy refers to a group of conditions that are caused by problems in brain development and that affect how movement and motor control happen in children. Problems with walking and talking are often the way people start a conversation about cerebral palsy.
As your child with CP is becoming a teenager, there are a couple of things you may want to think about.
It's important for all of us who are imposed with certain physical boundary conditions to push those boundary conditions as far as possible and maintain as much independence as absolutely possible.
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
Children with cerebral palsy have more complex self-management and self-care demands than children who are typically developing. They have to learn how to deal with medications and they may have to deal with medical equipment. At some point, they're going to have to learn about medical appointments.
I have cerebral palsy spastic diplegia. So it affects my legs and sometimes my fine motor skills. I walk with two canes. I do things a little slower, but I get things done.
One thing that parents can say to start a conversation with their kids is, "Let's talk".
As we all know, becoming a teenager means significant upheaval, not only physically, but in terms of friendships, in terms of learning, and life outlook. This is also true for adolescents with cerebral palsy and other developmental disabilities. We know that whilst we may of spent a lot of time focusing on their physical abilities and other difficulties it is not the only part of their life.
I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
Up to 50% of adolescents with cerebral palsy have an intellectual disability, as well as a physical disability. Adolescents with intellectual disabilities still need sexual health education, they just need it in a way that's more individualized so that they can understand it and use it.