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 visionhearing, 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.

One of many stretches Nick does every day to help with muscle spasticity

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.

A ramp outside of Nick’s home, it makes it easy to go out his front door and take walks when it’s warm!

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.

Nick after his “Anyone Can be a Hero” Speech at Johnson Elementary in 2019

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!

Nick loves when his staff come over for dinner!

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’s speech device is nicknamed “Ike” after his grandpa, because the voice reminds him of Grandpa Ike!

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 skiing at Eldora!

Nick has an adaptive vehicle that makes it possible for him to get around. He loves going to the car wash!

Nick’s van is essential for him to get around, and also looks pretty cool! Nick calls it the Silver Bullet

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.

Nick’s time alone is really important to him and also gives him time to be independent!

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.

PayPal Confirmed Charity – Support AiA!

Good news Awesome in Action supporters, Nick’s non-profit is now a confirmed charity with PayPal! This makes it easy for Nick to receive and track donations, as well as offering an option for supporters to have a recurring monthly donation. This means that you can support Nick and Awesome in Action with less hassle and a safe, reliable platform.

Becoming a confirmed charity with PayPal also reduces the fees for Awesome in Action associated with receiving and transferring money. This also ensures that PayPal has verified Nick’s status as a charitable organization and that his PayPal account is linked directly to his business.

As we all know, COVID-19 has caused some problems for many organizations, especially organizations like Nick’s that rely on performing community outreach to raise money and rally support for their goals.

For the last year, Nick has been unable to perform community outreach events, go into classrooms or group gatherings to spread the word about Awesome and Action and Nick’s goal to spread awareness and spark a shift in how we think about different abilities. This has made fundraising difficult for Nick, and he really misses his community outreach opportunities.

Please consider making a one time or monthly recurring donation to Awesome in Action. You can find the donation link by clicking on the donate button on the side bar or by clicking here.

These links will take you PayPal’s secure website and allow you to select the type and amount of your donation. Your financial information is not shared with Nick via PayPal.

Nick wants to thank his supporters for continuing to be a part of Awesome in Action’s mission to support people of all abilities in his community and spark a shift in the way we think about abilities! Funding can help Nick come up with creative ideas and activities to keep Awesome in Action going strong.

We hope to have more updates over the course of the year, keep checking Nick’s website and social media platforms for news and opportunities to help Nick spread his mission during this difficult time.