We rely on assistive technology for everything from holding utensils better to using a complex communication device. Makers Making Change is helping to create both custom and affordable assistive tech for all abilities and needs.
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.
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!
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.
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!
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.
Our 3rd Virtual Town Hall featured experts from the Shirley Ryan Ability Lab and Northwestern University in Chicago. This multi-disciplinary panel discussion highlights the latest updates in care of children with #CerebralPalsy.
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.
Neuroplasticity is the ability that the brain has to form new connections between different cells or between different areas of the brain.
It is recommended that women start having mammography screenings starting at about the age of 40, and it becomes more difficult to obtain these services if you have a disability.
The findings of this article demonstrate the need for improved screening rates in women with CP, and highlight areas for improving their screening experience.
As a parent, when it comes to different types of interventions for infants with cerebral palsy, how do you know what you have, what you don't, and what you could get?
Exploration for an infant means discovering anything about that environment. If that infant needs an opportunity to be brought to them, that's okay. Let an infant explore through their senses, whether it's touch, or smell, or taste, or sight, or hearing.
Spasticity is a condition of muscles that is a velocity resistance to stretch. What that means to a child and to a parent is that if you move the limb slowly, you have a difference than if you move that limb fast. Spasticity restricts movement and it creates a break on the system. It's as if they're trying to move, but they're held back. By treating spasticity, you may improve the range of motion or the action of the movement.
My name is Nathalie Maitre, I work at Nationwide Children's Hospital. I'm a physician and a researcher
Diagnosing cerebral palsy (CP) at an early age is important for the long-term outcome of children and their families.
Early diagnosis of cerebral palsy (CP) is critical in obtaining evidence-based interventions when plasticity is greatest.
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
"If you don’t know the solution to the problem now, you will find it"
PTSD can be common in parents after a child with Cerebral Palsy has left the NICU. One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.