People who have dyskinetic cerebral palsy experience involuntary movements that are difficult to control. These movements can be slow, twisting and writhing, or rapid and jerky, and can impact movement in the hands, arms, feet, legs and even the face or tongue.
Welcome to the second part of my travel series! In the previous post, I wrote about how I found my love for traveling through my trip to Madrid and Paris. Looking back, not only do I realize that these trips took place during very different phases of my adult life, but they also mark the different phases of my CP in recent years. Although CP is the result of a non-progressive brain injury, many folks experience a decline in their physical abilities in their adult years — the inevitable effect of aging, not just for those with disabilities, but for everyone.
In the next couple of blog posts, I’ll write about some of my favorite trips that I took over the years. I’ll travel down memory lane of all the new places I explored in recent years and eagerly wait until my next trip.
My cousin, Reeva, had recently moved to Kyoto, Japan to learn Japanese for a year, and she convinced me to visit her there. I didn’t know anyone else living in Japan and Reeva was going to be there short term, so I couldn’t possibly pass up going! I was admittedly pretty nervous about traveling all the way across the world— a 24-hour long plane trip, including a layover— especially to a country that uses a language that isn’t remotely like anything I was used to. But, again, I wasn’t going to miss this once-in-a-lifetime opportunity.
Do you or your child have movements that are difficult to control? Is your mobility and function impacted by abnormal movements and cause pain? If so, you or your child may have Dyskinesia. If you want to learn more, including how it is treated, please join us on for a new educational Town Hall with experts Dr. Susan Biffl, from Rady Children's Hospital, and Dr. Mark Gormley, from Gillette Children's.
This webinar with Rachel Byrne, Ashley Harris Whaley and Debbie Fink, focusses on the shifting attitudes towards disabled individuals and authentic representation in media, social media and more.
This webinar with Rachel Byrne, Executive Director of CPF, Ashley Harris Whaley, Director of Communities and Engagement at CPF and individual with with CP, and Debbie Fink, Vice President of Education and Inclusion at the Cerebral Palsy Foundation, overseeing its flagship “Just Say Hi” program, focusses on concepts and definitions addressing disability and how language has evolved.
This webinar, with Ashley Harris Whaley, Director of Communities and Engagement, Rachel Byrne, Executive Director of CPF, and Debbie Fink, Vice President of Education and Inclusion at the Cerebral Palsy Foundation, overseeing its flagship “Just Say Hi” program, focusses on the terms "ableism" and "allyship" and ways to facilitate making connections in the schools and communities.
This webinar with Ashley Harris Whaley, Director of Communities and Engagement, Rachel Byrne, Executive Director of CPF, and Debbie Fink, Vice President of Education and Inclusion at the Cerebral Palsy Foundation, overseeing its flagship “Just Say Hi” program. It It aims to provide an overview of disability history and laws.
Are you wondering how spasticity impacts movement, mobility and function? What tools do physicians have in their tool box to treat spasticity and how do can you help to maximize the impact of these treatments? This virtual event covers it all featuring two of the leading experts in Spasticity and Spasticity Management.
The American Academy of Pediatrics has updated its recommendations for Primary Care Providers to provide a "Medical Home" for children and youth with cerebral palsy. This comprehensive update gives primary care pediatricians the guidance they need to address the many needs that children and youth with CP experience and coordinate care across disciplines. The Cerebral Palsy Foundation has created a checklist to help guide you in raising your child with CP to living the healthiest life possible and ensure that you and your pediatrician are addressing all of your concerns.
Living With Cerebral Palsy by Paul Pimm describes the varying effects of cerebral palsy, how different people manage to live with this condition, and where to get more information.
Theodore "Armpit" Johnson tries his best to keep out of trouble after being released from juvenile detention. But it's hard to do when the only person who believes in you is your ten year old neighbor with CP, and people from the past are trying to get you back into bad habits.
In I Funny: A Middle School Story by James Patterson, middle schooler Jamie Grimm faces bullying and self-doubt as he chases his dream to become the world's greatest comedian.
Noah, a cello prodigy from a long line of musicians, wants to stick to tradition. Daisy, a fiercely independent disabled violinist, is used to fighting for what she wants and likes to take risks. But the two surprise each other when they play. They fall perfectly in tune.
You are Brave is a book for every kid who has ever thought, "What if I'm not brave enough?" It's about the courage we find within ourselves, and the wonderful possibilities that open up when we have the confidence to try something new.
In "Reaching For Sun" by Tracie Vaughn Zimmer, Josie Wyatt knows what it means to be different. Even if Josie wants to forget that she was born with a disability, her mom can't seem to let it go.
Medicaid Waivers, Katie Beckett or TEFRA are all forms of benefits that an "waive" medicaid financial restrictions for parents of children who have a developmental disability acquired prior to the age of three. Kidswaivers.org has provided a comprehensive, interactive website of all available medicaid waiver programs by State across the US.
NCART Standing Device Funding Guide contains all the information needed to choose, measure, and write a letter of medical necessity for a standing device.
A new school year means new teachers, a new grade, new friends, new goals and maybe even a new school. Our friends at Learning Disabilities Online have put together these helpful tips to help you and your child or teen transition back to school a little easier.
Standing devices and standing wheelchair devices are frequently prescribed and often denied equipment options for individuals with cerebral palsy. The attached paper provides evidence and guidance to help appeal to insurers for this equipment.
The National Institute of Neurological Disorders (NINDS) and the National Institute of Child Health and Human Development (NICHD) are hosting a national cerebral palsy research workshop that will help develop the next US strategic plan for cerebral palsy research, to be held virtually on August 17 and 18.
