Author summary on stakeholder perspectives of pediatric powered wheelchair standing devices.
In cerebral palsy (CP) muscles are often shortened so much that they restrict joint range of motion and the muscles themselves are weak. Thus, ‘shortness’ and ‘weakness’ are two important needs that clinicians must address.
We studied how common pain was thought to be due to muscle spasticity in the legs or arms is in children/adolescents with CP.
The Dyskinetic Cerebral Palsy Functional Impact Scale is a new tool useful measuring the functional impact of dyskinesia on children's movements and postures and the perceived impact of dyskinesia on daily activities. It can can help identify priorities for intervention.
This systematic review looks at all available evidence for pharmacological/neurosurgical interventions for managing dystonia in individuals with cerebral palsy to inform the AACPDM care pathway.
The Dystonia Care Pathway was created in 2016 based on best available evidence and is currently under revision. This link will be updated accordingly. The goal of the these Care Pathways is to help Health Care Professionals understand the research evidence on the topic so that they can make clinical decisions for the care of the individual.
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.
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.
Supportive Standing Devices, also known as Standers, are frequently recommended equipment for individuals who are primarily wheelchair users. There are lots of different types of standers which can support a range of different physical and activity needs. Learn more about them here!
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.
Jen Lyman provides a parent perspective on powered wheelchair standing devices as it relates to Dr. Lisa Kenyon's research article.
Living with CP taught Dr. Kathleen Friel much about educating others about her disability and now about her life threatening diagnosis of Metastatic Breast Cancer.
Plain Language Summaries are an excellent way to get a clear overview of clinical research. Our friends with Mac Keith Press and the AACPDM Community Council have worked together to choose articles that might be right for you.
The purpose of this study was to pilot an intervention of a sport-based youth development program modified for accessibility for children and adolescents with movement challenges, with the goal of community-based running participation using running frames.
Bimanual therapy, also referred to as intensive bimanual training, engages patients in active play or practice to improve the use and coordination of both hands. Bimanual therapy is different from similar unimanual therapies, like constraint-induced movement therapy (CIMT), because it promotes simultaneous use of both hands.
This study highlights caregiver knowledge and preferences to understanding the GMFCS and how that information should be relayed from clinicians.
The GMFCS, MACS and CFCS are all tools used by therapists and researchers to help classify the functional capabilities of individuals with CP. This research article provides evidence of their stability over time.
The GMFCS can be a helpful tool in clinical and research use and has been shown to be stable and accurate over time. It can also help individuals and families better understand cerebral palsy.
Powered mobility can offer users young and old a level of freedom and independence that may not be achieved through manual wheelchairs or other mobility devices.
Adults with Cerebral Palsy have unique care needs related to physiological changes that occurred with growth and development with Cerebral Palsy, including mental health, yet experience many barriers to proper care.