An employment agreement spells out the rules, rights and responsibilities for both the Personal Care Attendant (the employee) and the individual with cerebral palsy or family who is hiring the Personal Care Attendant.
Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
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].
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.
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.
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 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 first episode, listeners will meet the host, Jen, learn about her background, her son, Bower, and the reason for creating this podcast. Enjoy!
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.
As cities and states across the countries are lifting the COVID-19 lockdown orders, people are returning to work at their offices. However, since the virus is still very much going around, employers must be vigilant about keeping their workplaces as safe as possible. Although we might be seeing a sense of “normalcy,” there’s still a long way to go before reaching the pre-pandemic normalcy—if we
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.
Around the age of six all children are going off to school. Children move from explorative play, which is fairly informal to a much more formal day. That can be a lengthy day and it's quite structured. There are a lot of challenges faced by children with cerebral palsy throughout the school year.
There are a couple of key things to think about in helping children and adolescents make the transition into young adulthood and independence. One of those things is called mastery motivation and we can see mastery motivation early in life. It's the ability to persist in the face of challenge. If you're growing up with a disability, it can be harder to do things. If you are not challenged, if the environment is not set up correctly, or if you don't have the resources, then you start to feel that you can't master certain kinds of tasks.
Oropharyngeal dysphagia, or OPD, is an impairment of the oral or pharyngeal phases of the swallow. This can impair muscle movements and coordination of the mouth, such as the lips, tongue, jaw, cheeks, palate, and also muscles of the pharynx and the entry to the airway.
In order to get a good education, children need to access the curriculum. That's at the heart of their education. Some of the key challenges of getting students both their education and access to their voice in the class is simply understanding. Preparation for the student with disabilities is key. We have to foster success. We have to build a sense of success in the beginning. That starts with understanding the abilities of that student.
As the COVID-19 outbreak continues to sweep through the country, there are increasing orders from local governments for residents to stay at home, unless they’re essential workers. Both professionals and students are relying on Zoom and other video conferencing software to work or learn from the comforts of their home, although such measures, in most cases, were not permitted before the pandemic.
Weight, height and body composition are important indicators for development. The tools used to measure these can be different for children with cerebral palsy.
Children with cerebral palsy (CP) often grow poorly and assessment of growth in this population is further complicated by two main difficulties. Firstly, children may have joint contractures, muscular weakness, scoliosis, and/or involuntary movements that make standing or lying straight difficult, if not impossible.
Saturdays were special as a kid growing up in Port Washington, New York. Saturdays meant Burger King outings with my grandparents, a great big slice of trade-marked Hershey’s chocolate pie for me and piping hot oatmeal for them. And we can’t forget about the Kids Meal toys. But on this particular Saturday, everything was different - at the tender age of five, I started to notice that certain aspects of my life were just off.
I don’t know if this is just me, but my time in quarantine has made me have weird flashbacks to my childhood. As a kid growing up with CP, especially with a speech impediment and mobility limitations, my lifeline to making and keeping friends was through AIM (AOL Instant Messenger, for those of you who are too young to remember) and one of the first video chatting platforms, ooVoo. Fast forward 15 years, many of us are in a similar situation. To slow the spread of COVID-19, most of life has moved online, including friendships.
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.
Cerebral Palsy can be described by the way it affects movement and motor function, the part of the body affected and by how severe the impact is.
For some the day-to-day problems faced by children and adults with cerebral palsy, and their carers, are not motor ones alone. It is important that you discuss other areas of your child's development if you have concerns.
