March is National Cerebral Palsy Awareness Month. If truth be told, historically, I haven’t been one to “celebrate” any awareness months let alone my own – cerebral palsy! I like to call Cerebral Palsy the forgotten disability in adulhood. This year is different. As a dad with cerebral palsy, I felt compelled to recognize the month but to also bring attention to the unspoken truth about cerebral palsy. At least here, in Georgia. So, I thought I’d close the month out with a little not so happy awareness.
In general, people assume that with having cerebral palsy, I have doctors specializing in cerebral palsy. I wish that was the case! I’m not sure about other states, but here in Georgia once you turn 18 you are on your own when it comes to finding appropriate medical care. I hear people say call the Cerebral Palsy Association for Georgia. They must have a list of doctors. Unfortunately, that is not the reality.
The funny thing about that is that each state’s association is a franchise and that state’s franchise has the ability to decide what to focus on and who to serve. Georgia’s United Cerebral Palsy Association has decided to focus on children and not follow the adults they served as children. According to many sources, there are approximately 764,000 children and adults with cerebral palsy and about 10,000 babies born each year with cerebral palsy. Uh… just a thought those 10,000 babies will become adults … then what?
So, you’re probably wondering – what on earth got me on this soap box?? Well, let me tell you the ramp to get on this soap box has been about 2 years in the making. I turned the big 5 0 last year in the midst of the pandemic and a few years ago, my long time doctor of 20 years passed away suddenly. He knew about cerebral palsy, he was great! Now your thinking.. You found him… go find another. Yeah no, easier said than done. I found him by luck! I went to him 20 years ago because I had a cold. He walked in the room and said something to the effect “let me guess … cerebral palsy” and the rest was history. So, that was half of the ramp.
As an older adult, I have noticed changes in my body. As an older father to a young son not to mention I’m an older dad with cerebral palsy, I’m hyper-aware of my health and wonder sometimes, are the changes I see are just the rewards of reaching 50, or… is it my cerebral palsy, or is something else? A trimble in my hand… cerebral palsy or a warning sign of something else? Here in Georgia and I’m sure in other parts of the country there is not a place to call for a referral … you just spend weeks and months calling around hoping to hit the lottery of finding a doctor with at least a working knowledge of cerebral palsy. Which is why I say cerebral palsy the forgotten disability in adulthood.
I have always found interesting the raw definition of Cerebral Palsy is a brain in injury. Cerebral refers to the cerebellum (brain) and Palsy refers to paralysis. Yet… it’s not classified as a brain injury thus not eligible for the multitude of services available related to brain injuries! Again, cerebral palsy the forgotten disability in adulthood.