Today is National CP Awareness Day. Why are awareness days important? Well, the title says it all! AWARENESS! Awareness is necessary to raise funds for research, therapies and treatment. Legislation needed to protect the rights of those with cerebral palsy (and other disabilities) come through awareness. Families affected by cerebral palsy can feel isolated and alone. Awareness connects families with resources, medical communities and other CP families.
In honor of National CP Awareness Day I wanted to share 10 facts about cerebral palsy. I also wanted to share how CP has affected my life and the lives of those around me. Awareness bridges the gaps of those with CP and those without. I like to think my blog and advocacy is a brick in that bridge.
My friend Eddie and I
CP is the most common childhood disability.
According to this fact, I am not so unique. However, besides my friend and former busmate, Eddie, there was only 1 other fellow student who had CP and was also a wheelchair user. As a kid and teenager, I looked forward to camp every summer to connect with others like me. It can be pretty isolating not being able to connect with other CPers.
Children with CP are more likely to develop other conditions.
Cerebral Palsy is the result of an injury to the brain. When the brain is injured, other separate disabilities and conditions can result. In my case, I was diagnosed with a Visual Perception Deficit and Scoliosis. The Visual Perception Deficit is a result of my brain injury. However, the Scoliosis is most likely from my immobility. My Visual Perception deficit affects my independence to some degree. I can’t go into the community without a caregiver because of this deficit.
Scoliosis affects my quality of life. There are times I have to cancel activities because of the pain. I am lucky, as the progression slowed greatly during my growth years. I avoided the need for surgery and simply manage my pain.
There is no cure CP.
Cp is not progressive, which is a plus. However, there is also no cure. There is treatment and therapies to improve the deficits. As a child I participated in all forms of therapy: Physical Therapy, Occupational Therapy and Speech Therapy. I also participated in aquatic therapy and hippotherapy. For a while, I had a TENS Unit, in which electrodes were attached to me and I had mild zaps to my muscles.
Surgery is another treatment for CP. There are many options. Most of my surgeries were when I was young. I had two hip surgeries and a Selective Dorsal Rhizotomy. There are pros and cons to all interventions, so awareness helps parents make informed decisions for their children.
Most CP occurs during pregnancy.
My CP occurred after my birth. I was born three months premature. While in the NICU, I developed a staph infection, which a specialist suspects caused my Cerebral Palsy.
1/3 of people with CP can’t walk.
I happen to be one of them. I have been a wheelchair user since I was 3 years old. You think with 23 years of driving experience, I would be a pro. However, the scratches and holes in my wall says otherwise!
My friend Eddie is one of the 2/3 population of walkers. He can not only walk, he runs in marathons! Again, awareness helps give parents of young children with CP hope. It also gives them awareness of the realities they may face.
The number of people with CP is expected to increase.
Personally I was surprised by this. I would think with medical advances, the number would decrease. With awareness and an increasing CP community, I hope positive changes and medical advances will result.
1 in 2 people with CP experience chronic pain.
As discussed earlier, I have a condition that causes me to experience chronic back pain. I also sometimes suffer from knee pain which my mom and I found out was from a bizarre circumstance where my kneecap didn’t grow in the right place! When I was little my legs used to hurt so bad at times that they would keep me up. My mom would have to stretch them in the middle of the night!
Currently I use stretching, Biofreeze and CBD Oil to control my pain.
Motor disability in those with CP can vary.
I am considered to be on the severe end of the spectrum. Basically, my entire body is affected by Cerebral Palsy. I am dependent on caregivers for my physical needs. I can’t stand, walk or drive. My mobility is totally dependent on my wheelchair. However, I live in my own apartment and make my own decisions. I do this with the support from my mom and caregivers.
Those on the mild end of CP may only have one or two limbs affected. CP affects one side of my friend Eddie’s body. He actually lives in the same apartment building as I do. He does not need caregivers, has a job and even drives! As I mentioned before, Eddie runs in marathons!
1 in 5 people with CP can’t talk.
Even though I’m able to, I have a speech impediment as a result of my CP. I also struggle at times with a stutter. Some individuals with CP are completely non-verbal. I happened to know someone from camp who is nonverbal. However, that does not stop him from running his own greeting card business! When you have CP or any disability, no matter the severity, you have to focus on what you can do, rather than what you can’t.
Green is the official CP color.
Ironically, green also happens to be my favorite color! As we all know, green also symbolizes March, which is also CP awareness month! As a businessman, blogger, advocate, CPer, but most importantly as a human being, I want to say thank you from the bottom of my heart for everyone’s efforts in making sure that myself and 17 million others can live better lives!
And as always…Keep Rollin’ And Keep Smilin’!
Never stop reaching for your dreams!
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