CPF Executive Director Rachel Byrne and Christina Smallwood talk about parenting, raising a child with cerebral palsy and helping her learn to advocate for herself.
A lot of people with cerebral palsy will experience pain over the course of their life. Through better assessment we can provide better interventions, which will lead to a better quality of life.
The Cerebral Palsy Foundation has created a factsheet to help guide you in understanding and treating pain with CP. This fact sheet has been created for individuals with cerebral palsy to provide basic guidance surrounding common causes and potential treatment of pain.
CPF Executive Director Rachel Byrne and Peter Rosenbaum, MD, developmental pediatrician and CPF Scientific Advisory Council member discuss how current thinking about Cerebral Palsy has changed over time with advances in research.
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].
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.
Shelby Nurse discusses how pain has been part of the reality throughout her life. In this video Shelby talks about what strategies and pain management techniques have worked for her and how this have changed and different times.
I suppose there has to be one silver lining that comes out of being sheltered in place for months on end (due to Covid-19): I’ve finally been catching up on sleep. The recommended nightly hours of sleep is between 7 and 9 hours . For me, getting a good night’s sleep has been the best way to regain a sense of control and ease during such unnerving times. Not only does sleep improve mood and
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.
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.
There are so many different causes for potential pain that it can be hard to find the cause. If you have CP or are a parent of someone with CP it is really important to empower yourself with information on pain including what causes it and options for treatment. You need to work out what is causing the pain not just mask it with pain medication.
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
Cerebral palsy is caused by damage to the infant brain. This damage can involve not only the motor parts of the brain, but also the parts that deal with vision. This is not related to damage to the eye but is related to damage of the parts of the brain that process visual information.
Many of our products today have accessibility supports in them to the extent where we don't have to purchase anything else. It's already in there. Your phone, your tablet, your smart home devices. If you're going to look for these features on your devices, you can start in your settings. There should be something in there that says accessibility. Go in there, see what's available. The manufacturers have done a really nice job of describing these features right within the settings to give you a sense of what they're going to do.
If you’re a history nerd like me, then you probably wondered about the origin of cerebral palsy at least once in your life. As an ever-inquisitive kid, that was certainly at the forefront of my mind, especially when I was old enough to truly comprehend that I had CP.