This study highlights the importance of monitoring and managing chronic conditions in adults with cerebral palsy. It also provides important information that can help healthcare professionals better understand the health needs of this population.
As spring approaches, millions of high school seniors get one step closer to their career and to becoming the person they have dreamed about growing into since they were children. Receiving college acceptance letters is one of the most profound experiences in a young adult’s life. Moving out of your childhood home and stepping into the real world is a majorly exhilarating life event.
CPF Executive Director Rachel Byrne and Jason Benetti talk about his hard work, misperceptions, resilience, and his experience with cerebral palsy.
CPF Executive Director Rachel Byrne and Xian Horn, author and disability advocate discuss breaking down stereotypes.
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.
Growing up with Cerebral Palsy I often wondered if I would ever experience my happily ever after. The fairytales my mom read me always followed the life of a beautiful princess falling in love with a handsome prince. You never read about a prince and princess in wheelchairs or with any type of disability for that matter.
Though the initial insult or injury to the brain that causes cerebral palsy is non-progressive, aging with cerebral palsy and lack of physical activity during critical periods of development can impact biologic and metabolic function for adults with cerebral palsy.
CPF Executive Director Rachel Byrne and Lily Collison with Kara Buckley and individuals from the book Pure Grit, talk about what it takes to be successful with a disability.
CPF Executive Director Rachel Byrne and Peter Trojic, professional dancer with the Heidi Latski dance Company in New York City, discuss dance and disability.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
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.
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
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.
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
A year ago, I wrote in my Forbes column about the decades-long pattern of Pride Month celebrations excluding people with disabilities. The underlying reason why Pride events were (and still are) mostly inaccessible for people with disabilities, both in terms of physical spaces and social acceptance, is that mainstream media and public don’t see them having identities outside of their disabilities.
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.
As I progress in my career as a journalist and writer, the more attention and followers I receive on social media. Every so often, I receive a direct message or email from young readers, explaining how I’ve become a role model for them. They express the inspiration they gain from witnessing me not allowing my cerebral palsy get in the way of following my dreams. It was then that I realized I am now the role model that I desperately needed when I was a young girl.
I’m at that age when Facebook friends begin to get engaged and married, and shortly after, have children. So, I feel the pressure to proceed onto the next stage of my adulthood. But, as anyone with cerebral palsy knows, everything in life is a tad more complicated with this disability.