Disabled friends.

Why Having Friends With Cerebral Palsy Is Important to Me

It’s very important to have people who can relate to you. Not only can this give you more comfort emotionally, but it can help build camaraderie with others. That’s why it’s always been important for me to have friends who share the same disability as me: cerebral palsy. Not only am I happier when I’m around people who share similar experiences, I also have the ability to mentor people who are younger then me and show them it’s OK to be different.

My first friend with cerebral palsy was “K.” We met at the tender age of 2 thanks to our mothers and shared the bond of sleepovers and horseback riding. We were best friends who talked about everything, laughed together and worked out together. She was there when I took my first steps in my walker and she yelled “Go Justin, go.” She was there for me when I was sad and she smiled when I was happy. When I was 14 we experimented with dating, and unfortunately this took a toll on our friendship as we no are longer as close as we once were. Sometimes I think of “K” and I enjoy reminiscing about one of the women who filled with the self-confidence I have today. If you’re reading this article I hope you’re well, sister!

There have been two constants when it comes to having friends with cerebral palsy: Kyle and Ani. Kyle and I met when we were 9 at the Center for Independence, a place where people with cerebral palsy work out to get better and build self-confidence. I served as a pseudo-mentor and we bonded over
wrestling and later women and shared experiences. Kyle’s very bright and determined and he’ll always be one of my best friends.

I met Ani a couple of years later, also at the Center. Ani is very quick-witted and funny and is not afraid to joke around with me or call me out when my ego gets too big. I still talk about the time I took her prom and bought her a corsage. We were on the dance floor all night long. Ani is an individual I can bare my soul to without fear of being judged. She will always be a person I can lean on.

One of the best things about interacting with people with disabilities is the chance to be a mentor to individuals who are younger than me. I relish the opportunity to help younger people who are having trouble adjusting to the fact that they are different. One of these girls (whom I will not mention by name), is pretty awesome in my book. She lives in a small community and often feels isolated, but when she comes to the Center you can see the effervescence and joy come out of her. I also hang out with guys who have CP and we often talk about girls, play video games or we just plain roll. The chance to give back to younger people with CP gives me happiness, purpose and understanding and helps us grow as a community together.

I enjoy having friends with disabilities because it gives me a chance to share similar experiences, be a mentor and create everlasting friendships. Having friends with disabilities is a must for me!

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Thinkstock photo by Mikanaka.


Person in wheelchair.

When People Talk Down to Me Because of My Disability

See a person as more than their said “disability.” See them as any other person who could be of value to society. Someone who can contribute, despite whatever limitations they may possess.

If you see a person who has an apparent physical disability (someone who uses a wheelchair, for example) don’t immediately assume they have an intellectual disability. Don’t walk up to them and ask them a demeaning question in a childlike voice — it gets really annoying. Treat them like a human being who is quite capable of many things.

Since I have cerebral palsy and use a power chair, it is not out of the ordinary for a stranger to walk up to me and start treating me like a child. Believe me, it happens a lot. I could write a whole book on my experiences. But I don’t get angry with the person. In fact, I usually just answer whatever foolish question they ask me and laugh about it later with my mom. This has happened so many times, it’s become a comical aspect of my everyday life. The more ridiculous the question, the more hilarious it is.

It does make me extremely frustrated, though, to think this is a societal norm. People often see a wheelchair and immediately disregard the person in it. Disregard that they might have feelings or intelligence. That is something that annoys the heck out of me. Sometimes I want to talk back to the people who “talk down” to me. But number one: I don’t want to be rude. Number two: if they’re around me long enough, they’ll get the idea that I’m intelligent. Number three: they haven’t been taught any differently. Society has made them think this way. I’m hoping with time that will change.

I hope you take these words to heart, and that the next you encounter a situation like I’ve just mentioned, you approach the person with as much respect as you would any other person. I hope you see more than their disability. If you are the one receiving belittlement, I challenge you (and myself as well) to approach people in a polite manner, while at the same time giving them a glimpse of the abilities you possess. Let’s change the societal norm.

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Photo via Thinkstock.

Children running in meadow at sunset.

How I Rise as a Mother With Cerebral Palsy

It’s not uncommon for mothers of multiples to hear, “How do you do it?” Mothers of three young children under 5 are often asked, “How do you make it work?” Mothers with a physical disability like cerebral palsy are constantly questioned, “How do you manage?” As a mother whose family tree encompasses all of those branches, there is quite a bit of curiosity as to how exactly I do it.

Being a mom with cerebral palsy isn’t easy. I have a 5-year-old son and 2-year-old twin daughters. Between my limited mobility, poor balance and my typical aches and pains, most days feel I feel like I’m the tortoise and they’re the hare. As a stay-at-home mom, that race begins bright and early and doesn’t slow down until about 14 hours later. And that’s assuming all six of those sweet little eyes close and they drift off to sleep on schedule.

Despite the long days, the double dirty diapers and the sheer fact that I have created a tiny army who has outnumbered me, I can handle it. The truth is, as a mother with cerebral palsy, the hardest thing to manage is my emotions. There is no pain like the pain of not being able to lift your crying child who’s before you with open arms. My heart breaks a little every time I can’t be the one to carry my sleeping child to bed. It hurts to know I can’t run around the yard and play with my children like we all wish I could.

But I continue to rise. I rise because there is nothing in the world that lifts me up to rise more than my children. Nothing.

That is how I do it. I do it because my children are my motivation, my greatest blessings and my world. It is my hope that in seeing me struggle and continue to try, all the while accepting my limits, my children will have greater acceptance and appreciation for all the peaks and valleys life has to offer. I hope it encourages them to always rise above life’s challenges and to find their own path. I hope as they learn and grow, they too realize that even when you are bombarded with voices that question how it can be done, with hope, determination and love in your heart, you can always rise above.

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Thinkstock photo by Zurijeta.

Surgeons performing surgery in operating room.

Why I'm Having Surgery for My Cerebral Palsy At 32 Years Old

When I entered my 30’s I thought I had reached a level of maturity and wisdom that far surpassed my earlier years. I felt educated, informed and more confident in who I am than ever before. No sooner than I felt this wave of wisdom and self awareness did I learn something that would rock my world to its core. Not in an earthquake kind of way… much more like an all-night dance party. All it took was a rough day, a loving Mom and a late night Google search that led me to an article on the Internet that would change my life… permanently.

See, one day earlier I had a meltdown. I don’t remember what happened, or if anything in particular happened at all. But I do remember exactly how I felt, because it is a feeling that had plagued me many times before. I was tired. As a mom of 3 young children, that is to be expected. What brought me to the point of hysteria was the unexpected. At 32 I didn’t expect to be in so much pain. My body ached in a way that left me panicked. I wondered if this is what my life would look like, but deep down I knew the truth. I was only going to get worse. I knew what it was. I knew why it was. What I didn’t know was how or if I could change it.

At 1 year old I was diagnosed with cerebral palsy (CP). The type of CP I have is spastic diplegia, and only my legs are affected. Cerebral palsy causes intense muscle stiffness due to spasticity. For me, this spasticity affects my balance and the way I walk. My movements are awkward, sometimes difficult and I walk with a pronounced limp. Because of muscle weakness and the energy required to move, I tire very easily.

Throughout my life my parents and I were told cerebral palsy is not progressive. However, I’ve learned through experience this isn’t true. As a child I ran through the yard with my brother and sister. As an adolescent I remember getting into a fight with my girlfriends and walking a few blocks by myself, unaided, to get home. I knew it would be hard but I was stubborn and I was sure I could do it.

As the years went on, whenever someone was kind enough to offer me a hand, my stock answer became, “I think I’ve got it.” The truth was, I wasn’t so sure anymore. My 20’s felt like a slow decline in my mobility. Soon having a hand to hold once in a while wasn’t enough. I needed a cane to navigate the world outside the house.

I hoped exercise would help me regain my strength and independence, but was met with pain that far outlasted my workout sessions. By the time I was 30, I would often lay my head down at night and cry in pain and complete exhaustion. From the moment my feet hit the floor in the morning I am stiff, and hurting. The weight of the weakness in my legs and the rubber band-like tightness are a harsh reminder of what is. Those first few steps are brutal until I find the momentum to carry me throughout my day. I thought this wasn’t supposed to happen? But it was, and it is.

On one rainy September morning, I had a meltdown. I couldn’t keep in the pain, fear and frustration any longer and I let it all out. I vented to my mother and she held me as I wept. Just getting all those emotions out was cathartic. I said my piece. The day went on and it was back to taking care of my babies, just as my mom had taken care of me.

The next day when I saw my mother, she was beaming. She sat me down and with a stack of papers in her hand; she told me she found answers. She proceeded to hand me an article titled, “SDR: Life-Changing Surgery for Cerebral Palsy.” The author Nicole Luongo described a life I knew all too well; a life with cerebral palsy. Although having CP can mean very different things for those affected, in that moment, Nicole’s story spoke to me. As I read on I was enthralled to learn that at age 40, Nicole underwent surgery to remove the spasticity from her legs… permanently.

This surgery is called selective dorsal rhizotomy or SDR. SDR is a surgical procedure in which spasticity is addressed at the neuromuscular root. During the procedure, rootlets within the spine are tested and those that are “misfiring” and causing spasticity within certain muscles are cut. The outcome is permanent and if all goes well there is the potential for spasticity to be completely eliminated.

It was as if I was floating outside my body. I read and was overjoyed with the possibility of this becoming my reality. Could this be the key to keeping me mobile and active? Could this help relieve some of the painful stiffness I have always known? Why wasn’t I ever told about this? Is this even real? It was almost too good to be true. By the end of the day I had reached out to the author of that article and she assured me just as she stated in her article, SDR changes lives for people with CP. She answered my many questions and directed me to information on Dr. T.S. Park and the St. Louis Children’s Hospital.

By the next day I had read and reread all about Dr. Park, SDR and all it entails. I learned that Dr. Park is one of the the only neurosurgeons in the United States who is willing and experienced in performing SDR on adults my age. As such, he has strict requirements that must be met for adults to be considered for this procedure. It is a three-step process, the first of which is that initial, basic criteria must be met. Subsequently, a physical therapist must work with you to complete documentation for step two, which must be sent to Dr. Park along with x-rays and more detailed personal information. Lastly, either a video or in person physical assessment must be completed before it can be determined as to whether or not you are a candidate for the surgery.

Step one was a breeze. Step two was extremely nerve wracking. At the urging of my husband, we agreed that due to the nature of the surgery and to truly feel comfortable with the outcome, whether it was a yes or no, we needed to go to St. Louis and meet Dr. Park in person.

In March, six months after learning about SDR, my husband and I flew from NY to St. Louis for my consultation with Dr. Park. Being in his office was my equivalent to waiting backstage to meet NSYNC circa 1998. I was so anxious to meet the man who dedicated his entire life to helping people like me with CP. Unlike the many neurosurgeons who perform SDR on young children, Dr. Park is rare as he saw the need for care within the forgotten adult CP community. That makes him a hero in my book! Whether he approved me for SDR or not, I was truly awestruck to have the opportunity to meet him. I knew whole-heartedly that whatever Dr. Park’s decision, it would be the right one for me.

As it turned out, thanks to God, my Mom, author Nicole Luongo, and the best husband on Earth, I was approved for SDR surgery! Dr. Park said the surgery would help me “tremendously” as far as my ease of movement, transitional movement, ability to be active and exercise, and overall comfort. Most importantly, I would in essence be given new legs. Dr. Park confirmed what I feared for years. Without SDR I would eventually lose my ability to walk. Thanks to this incredible opportunity, I believe that is a fear I can now put to rest.

I know I will have to work harder than I ever have to retrain my body to walk. I will be given access to muscles I’ve never used before, as the spasticity that restricted them will be eliminated. The post-op protocol for SDR is just as, if not more important than the surgery itself. Dr. Park will give me the tools to make the most out of this body of mine. Then it’s all on me to keep myself strong, healthy and active. I am so incredibly grateful for this opportunity and ready to work and earn my new legs.

I have such comfort in feeling the anguish of the unknown is no more. I am stepping off that downhill slope and starting anew on a much more promising path. It may not be easy, but I’m strong, capable and ready. In the summer of 2017 I will undergo life changing SDR surgery. All it took to get me to get here was 32 years, a rough day, a loving Mom and a late night Google search.

Learn more at SDR Strong.

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Woman and man with cerebral palsy talking.

10 Things You Should Know About Cerebral Palsy

Cerebral palsy is a condition that may seem confusing or mysterious, especially if you don’t know a lot about it. Instead of doing some research on the condition or even just asking questions, people sometimes button down and avoid the topic — and the people — altogether for fear of saying something insensitive or offensive. Whether you’re familiar with cerebral palsy or are totally unfamiliar with the term, here are 10 things you need to know about it.

1.    What is it?

First, let’s get some facts out of the way. Cerebral palsy is a motor disability that is usually diagnosed in early childhood. It makes it hard to move and to stay balanced when upright. It is the most commonly diagnosed motor disorder for children, with the CDC estimating that 1 out of every 345 children has been diagnosed with the disorder.

2.    It’s not a disease.

Cerebral palsy is not a disease. You can’t catch CP like you catch the flu, and it’s definitely not contagious. It’s also not a birth defect, and in most cases, it’s no one’s fault. The causes of CP are currently unknown, but you can’t catch it.

3.    It’s Not Always the Same, Part 1.

I hesitate to use the word spectrum because it is most commonly associated with autism, but CP exists on a spectrum too — the disorder affects each person differently. Even two people who were diagnosed at the same time might go two totally different directions when it comes to the development of their condition. Some people might be able to walk with little trouble, while others might need a wheelchair for mobility — it’s different for everyone. Treatment options are also different depending on the particular diagnosis. Things like exercise and hydrotherapy can be a great tool because it provides a way to strengthen the muscles even when they’re difficult to control.

4.    It’s Not Always the Same, Part 2

You don’t feel the same as you get older, right? You might start to feel more mature, or your joints might start to ache. The same rules apply for people with CP — the condition changes as the person grows up and ages. Some studies have been done that look deeper into the development of CP for those who reach adulthood, which is upwards of 99 percent of children diagnosed with the disorder.

5.    It’s not an intellectual disability.

Individuals with CP often have average or above-average intelligence, though if they have a speech impairment, they might have trouble conveying their thoughts. Talk to a person with CP like you would talk to anyone else. If they need you to slow down, or need some sort of special accommodation, they’ll probably ask for it.

6.    Get a Job!

Many people with cerebral palsy can get a job and live a full and fulfilling life once they reach adulthood. It’s important to understand one’s need for job accommodations and make sure the employer understands them as well, but beyond that, finding a job is just one more part of growing up. You might want to take the time to educate yourself on your state’s laws concerning disability and employment, just to be prepared for the future.

7.    Chase Those Dreams.

Chasing dreams is just like finding a job — there’s nothing standing in anyone’s way! If someone with CP wants to climb a mountain, go whitewater rafting or jump out of an airplane, there are ways to accomplish all of this and more. It’s got nothing to do with CP.

8.    It Doesn’t Change Someone’s Personality.

A body that doesn’t cooperate might seem like it could stifle the personality within, but that couldn’t be further from the truth. People with CP can have vibrant, amazing, exciting personalities and their movement disorder doesn’t do anything to dull their shine. CP is a fact of life, but it doesn’t stop people from laughing, crying, making friends or having relationships.

9.    It’s a Bit “Sexist.”

More boys will be diagnosed with cerebral palsy than girls. The ratio of boys to girls being diagnosed is 1.4/1, which means that for every 100 girls who are diagnosed with CP, 140 boys are diagnosed.

10.  They’re Just Like Everyone Else.

When it comes right down to it, people with CP are just like everyone else. Sure, they’ve got a condition that means their muscles don’t always work right and they might need a bit of help every now and then, but if you think about it, who doesn’t need a little help from time to time? Anyone who’s ever had to pack a house or move a sofa knows how important a little bit of help can be.

Hopefully you have a better idea of what cerebral palsy is, how it can affect someone’s life and most importantly, that it doesn’t make someone any different from you. CP is a diagnosis, a medical condition, not a person. The next time you meet someone with cerebral palsy, take the time to get to know them and ask some questions. You may be surprised how much you don’t know.

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Thinkstock photo by Huntstock.

Neha in her standing wheelchair.

Cerebral Palsy Does Not Define Me. I Define Me.

I am one of 17 million people across the world living with CP (cerebral palsy). CP is the most common physical disability in childhood.

I wanted to share what CP is to me and then bring a little light to what life is like for me with CP. When I was growing up, I couldn’t walk. My parents said I would also try to crawl with little success. My muscles were much weaker than “normal.” But the word different was never used in our household… because the only thing different about me is how I see the world. Even on my worst days, it has still been my main source of hope. I have been blessed with a sharp mind, which has helped me to keep a “can-do” attitude. I hope my hard work is an inspiration to others.

I have loving parents and a caring big sister who have supported me through it all. I would not be where I am today without their encouragement, care, and allowing me access to resources that will help me achieve my goals.

I am also blessed to live in a country that has respect for individuals with disabilities and gives us extra access to resources. I am currently working towards obtaining a college degree. I am also an advocate for CP awareness year-round. I am planning on opening an online adaptive clothing line soon in Minnesota in hopes of enriching the lives of those around me with disabilities.

My desire is that my life story will bring hope and encouragement to others.

CP does not define me; I define me. I am a strong, intelligent, and beautiful human being.

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