March is Cerebral Palsy Awareness Month – A Day in the Life of Nick
What is Cerebral Palsy?
Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.
All people with CP have problems with movement and posture. Many also have related conditions such as intellectual disability; seizures; problems with vision, hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures). (https://www.cdc.gov/ncbddd/cp/facts.html)
Spastic Cerebral Palsy is the most common type and affects 80% of people with CP.
A Day in the Life of Nick
Nick was born with Spastic Cerebral Palsy. Nick will be 46 years old this year.
A day for Nick looks a bit different than a day for a person without a disability.
Nick has care providers that assist him 24 hours a day.
Nick starts his day much the same way as you might: he wakes up, takes a shower, and gets dressed.
Nick has to do some things you might not have to do like take medications and do stretches of his entire body. Some of the medications Nick takes help with things like his breathing and spasticity in his muscles. The stretches Nick does twice a day help reduce spasticity in his muscles and help him move easier.
Nick uses a power chair to get around. Nick uses his power chair like you would use your legs. Like other people who use a wheelchair on a daily basis, accessibility is very important to Nick. This means he has to pay special attention to making sure he has accessible parking as well as scoping out wheelchair ramps and sidewalks, especially at new places. This adds another layer to how Nick gets around every day. Nick’s home is accessible for him and includes ramps in his garage and outside his front door.
During the day Nick works on his business, Awesome in Action. He works to spread awareness and inclusion for people with intellectual and developmental disabilities in his community. Nick’s work is just as important to him as your job might be to you. Nick finds purpose in working to advocate for those with different abilities. One of Nick’s favorite parts of his job is working with children in his community who may not have much experience with people with disabilities.
Something that’s different during Nick’s work day is that he doesn’t take a lunch break anymore! Nick is not able to eat food by mouth and has a special pump that delivers food to him all day. Nick still loves to go to restaurants or have dinners at his home with his providers and friends. It’s all about the atmosphere!
Twice a week, Nick participates in Language Therapy where he works to use his speech device to communicate more effectively. Nick’s speech device is his voice. Nick loves to tell jokes and tell stories about his life and friends. Nick’s device uses picture and word association to help him navigate to different parts of his device like people’s names and locations. This means that it can take Nick a little longer than an average person to complete a thought or finish a sentence, so it is important to Nick when people have patience and let him finish what he wants to say.
Nick enjoys activities that you might like as well. Nick loves to shop, especially at the ARC Thrift Store! Nick enjoys spending time with his friends, going to church, watching movies, listening to music and looking at social media. Nick has gone on rides at theme parks around the country, has ridden in a hot air balloon, and loves going skiing at Eldora in the winter with Ignite Adaptive Sports!
Nick has an adaptive vehicle that makes it possible for him to get around. He loves going to the car wash!
Like all of us, Nick enjoys spending time by himself as well. Nick is able to use his hands well enough to spend time alone in his room, where he enjoys listening to his large collection of cassette tapes. The cassette tapes are just the right size for Nick to be able to manipulate them and use a tape player on his own. Nick calls this his “room time” and just like you, time alone to decompress and gather his thoughts is very important to him, especially after a long day of work.
When it’s time to call it a day, Nick needs help getting to the bathroom, brushing his teeth, and getting into bed. Nick has a provider spend the night with him every night to make sure he has everything he needs. Nick uses oxygen at night to make sure his lungs are getting as much oxygen as they need to function appropriately.
In many ways Nick’s day looks just like anyone else’s but he just needs a little help with some tasks and activities. His days are still full of fun, laughter, and new experiences just like yours.
There is no cure for CP but there are many therapies and medications that make living as a person with CP easier.
March is Cerebral Palsy Awareness Month, and the U.S. National Cerebral Palsy Awareness Day is March 25th, 2021. This helps spread awareness about CP. Wear green in support of Cerebral Palsy Awareness Month. Green represents new growth and inspires a renewed life.
Do you know someone in your life who has CP? Reach out to them and find out more about their lives and what you can do to help spread awareness about CP.