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.

We want to hear your story. Become a Mighty contributor here.

RELATED VIDEOS

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.

We want to hear your story. Become a Mighty contributor here.

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.

We want to hear your story. Become a Mighty contributor here.

Little girl sitting on hospital bed, smiling and excited to have a brown therapy dog on the bed with her

A Love Note to My Wife Caring for Our Daughter in a Hospital Room


Last week, at age 7, our daughter Pearl was hospitalized for the 11th time. And, just like the 10 times before, you were by her side all the while.

Together, we have overcome what feels like challenge after challenge ever since our Pearl had a hypoxic stroke that resulted in brain injury at just 6 weeks old. We have learned how to be her best parents, how to coordinate her care, how to make her life happy and healthy.

And yet, when it comes to hospitalizations, you are the one who takes it on.

So when you called to tell me you were bringing Pearl to the area’s Level 1 Pediatric Trauma Center 90 minutes away — as Pearl was sick in the backseat of our minivan — my heart ached for both of you.

Because while I cannot overstate my concern for our daughter, I also know you, Natalia.

During a hospitalization, you will go days without sleeping, eating or thinking of yourself in any way. You will steadfastly sit and sleep by Pearl’s side for as long as her stay lasts. You will survive on stale bagels and a million cups of sour coffee from the 24-hour shop in the hospital lobby. You will refuse to leave or let me stand in your place.

(Except for the one time when Pearl’s physician looked at you, red-eyed and dehydrated, and insisted I be allowed to take over, just for one night).

Only once Pearl is safely back at home, will you allow yourself to collapse with exhaustion. For weeks after such an episode, you will stumble through life seeking sleep whenever you can get it. But first, always first, everyone else has to be OK.

As Pearl’s father, your husband, and the default parent assigned to reassuring and caring for our neurotypical son during his sister’s hospitalizations, I often feel at a loss for how to best support you through these times.

Just like when — during this last hospitalization — I realized you had left for the trauma center without any food or water or change of clothing. I could not bring you supplies until noon the next day, after I delivered our son safely to school. And when I finally did see you, you said you were fine.

But I could see the exhaustion. Mental. Physical. Emotional.

As parents of a child with a disability, these episodes are frequent aspects of our family life and we continue to adjust. When hospitalizations go on for days and weeks, the cumulative effect of the sleeplessness, the worry, the loneliness, the dehydration and the poor nutrition can be devastating. It’s hard, but feels necessary to keep our family together and safe.

So, Natalia, I want you to know I see what you do and I appreciate it. And that when I show up with a change of clothing, or a thermos of herbal tea, or brown-bag sandwiches, I wish instead I was delivering you solace, and relief, and that oh-so-precious sleep. But instead, I will continue to support you, and our family, and our children, in the ways I can, and be forever grateful for your unwavering strength.

Editor’s note: This story has been published with permission from the author’s wife.

We want to hear your story. Become a Mighty contributor here.

Why I Love My Wheelchair as a Young Woman With Cerebral Palsy


We all have things we treasure — our phone, jewelry or a favorite item of clothing. The things we treasure make us feel good or benefit our life. One of mine is my wheelchair. Yes, my wheelchair! I have cerebral palsy and am able to walk short distances, so I’m only in my wheelchair part time. But I am grateful to have the chair when I need it.

At the same time as I was given my first wheelchair I had recently had surgery, so the chair I had expected to use occasionally, I needed to use full time. I remember being pleased as the chair fit me and fit through doorways easily. After having my National Health Service chair a few years, I learned to drive, and realized I could lift my chair in and out of the car. For a while I used canes, crutches and walkers, mainly because I didn’t think I’d be able to be independent in a chair. I saw friends who use chairs and they seemed to be light and easy to get in and out of the car. I decide to explore my options.

I decided to get a new wheelchair assessment. This assessment couldn’t have gone any worse. We arrived and I was told that they had a choice of two wheelchairs. Both were OK, but the crucial thing for me was could I get them in the car? Neither fit in the boot (trunk). “Put the back seats down,” I hear you say. Well that has a number of problems — one I can’t have more then one passenger, and I’d have no room for anything else. The second problem is that I am small and have poor balance, so I couldn’t safely reach the chair. At the end of the appointment there was mention of the wheelchair voucher scheme.

I came home feeling rather disappointed. My hope of being independent seemed further away. But I looked on the internet at lightweight wheelchairs, and spoke to a friend who used a lightweight chair. After looking on the internet and visiting mobility shops, I was more hopeful — but finding the right chair for me still wasn’t going to be easy.

I visited a shop and looked at two wheelchairs; the people who worked in the shop used chairs themselves so really understood the importance of getting the right chair. Both were easier than the ones I’d tried at the assessment, however I still struggled to remove the wheels. But they would fit in the car and were lightweight. A few weeks later I went back and was told that a new chair had just come in. This chair was light, fit in the boot without having the seats down and would provide me with the independence I longed for.

The wheelchair is used as the symbol for disability; the word disabled can mean less abled. This means that a wheelchair can be seen as a negative. Now I’m not saying that being in a wheelchair is not difficult; it can be very challenging. Our environment is not always built for wheeling! But for me, the wheelchair is something that helps me to overcome the effects of my disability.

I’ve had my chair for about two years now. I love my wheelchair for a number of reasons:

It saves my energy: my cerebral palsy means I use up to three times more energy. Using the chair means I can enjoy a full day out or go out after a busy week.

I feel safe: my balance isn’t great. In certain situations using the chair makes me feel much less vulnerable. I don’t have to worry about losing my balance or being trapped in a door — if I do get stuck in a door the chair gets bashed, not me! This also means that I feel more confident going to new places.

Sometimes I’m in pain: my cerebral palsy means I have muscle spasms. These can cause pain, and on bad pain days my wheelchair allows me to continue with daily activities.

It gives me more independence: before I got my wheelchair, I would only do small amounts of shopping at a time, or someone would need to be with me to help me use my NHS chair. The chair I have now is lightweight and means I can go out and about on my own.

One of the best things for me is being able to enjoy shopping for presents for my family, especially my mum. She was the person who would take me shopping; although she never know what I’d bought, she often knew the shop I’d been in, or I’d have to give my brother the money and details of what I wanted and he’d get it. I know neither my mum or my brother ever minded helping, but I always felt stressed or anxious around mum’s birthday as I couldn’t do what most 20-somethings can do. This year my mum had a real surprise and it was a gift I purchased for her all by myself.

Other occasions when the chair makes life easier is social situations, especially when I am going on my own or to a venue I don’t know. Last weekend my dad dropped me off in town and I felt safe, comfortable and confident enough to stay on my own. Having my wheelchair meant I could move around to talk to different people, get my drink from the bar, and join everyone on the dance floor for much longer than I could have otherwise.

I am writing this because as a part-time wheelchair user, I want people to understand the issues I face and challenge the idea that a wheelchair is always a negative. People have often made comments or behaved in a way they think is helpful or encouraging, but actually make me feel hurt, misunderstood and frustrated:

“You don’t need to be in that.” – I feel that people say this to make me feel that I don’t really need the chair. But to me it shows lack of understanding. If I’m in my chair I feel it is the best thing for me at that time.

“Why are you in there?” – My response to this depends on who and how I’m asked. For example, some people I see regularly have never seen me in my wheelchair. If you work with me or meet me at my local pub I will not be using my chair; meet me on a day out or shopping and I’ll be in my chair. In this instance it offers a good opportunity to explain more about my condition, and this is positive. However, some people will say it in a way that implies that they don’t really want to know, they just don’t think I should be in it.

Another problem I face personally as a wheelchair user is linked to my condition. Because cerebral palsy affects my speech, people often think that it must affect my mental function. Some people do have intellectual disabilities as well as cerebral palsy, but I do not. I also, unfortunately or fortunately, don’t look my age. I’m sure I’ll be glad of this one day! But I have been asked various times “Are you lost?” “Where’s your mummy?” People try to push my chair without asking, or even worse continue to attempt to push my chair when I’ve said I’m OK. If the person thinks you need help, it can be very hard to convince them you are OK on your own.

I also find that if I’m out with my mum or a friend, people will talk to them instead of talking to me. If I am out with my mum or a friend it’s because I enjoy spending time with them. Many activities are more fun with someone else, not because I can’t be out on my own.

Despite the challenges I face, I enjoy the freedom and independence my wheelchair gives me and see my wheelchair as a positive. If you are thinking about using a wheelchair or have a child who may benefit from a wheelchair, I would encourage you to see the wheelchair as a positive thing that can improve quality of life for yourself and your family.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Katarzyna Bialasiewicz.

Kelcie walking on the beach with a relative.

To Children With Cerebral Palsy: You've Got a Friend


Dear Children With Cerebral Palsy,

You may have seen my last letter and thought it was cool that someone would take the time to write you and encourage you. I’m a 19-year-old with cerebral palsy. I wrote that letter because when I was growing up I looked for encouragement online, but everything was for parents. I hope these letters will be the start of changing that. This letter will be more for older kids.

Growing up with a disability (and possibly a speech disorder and more movement than your friends) is definitely not always a walk in the park. You may accidentally hit a friend, say a simple word ten times before someone understands, or run over someone’s foot. But in the end, you’ll have many funny stories to tell when you’re older.

I do want you to know that not everyone has the patience to wait for you, to figure out what you’re saying, to help you. Most people are willing to help, but don’t be surprised if you meet a few people who don’t understand. Some people are scared, as silly as that might sound. It’s not uncommon to meet people with disabilities, but in some towns it is. I live in and around towns like this. I was the first girl with a physical disability at all of my schools, at the church where I grew up, and at the studio where I danced. But because of me they are now serving other people with disabilities, and they have more resources for them. You too might be the first person with a disability at some places.

Understanding people with speech disorders isn’t always easy; you might already know this. It doesn’t get much easier as you grow up either. Your family may still have trouble understanding you. But it’s OK because there are other ways of communicating, like sign language or pointing to what you want. Find a way that works for you; this might be a mixture of two or more ways. Know who you’re talking to; how will they understand you best?

People who don’t know you very well may help you too much. I don’t know why, but people often think they’re helping when they aren’t. I guess that’s just the way they are. They’ll learn over time. As I mentioned before, some people are scared of helping you, or rather they don’t know how to help you or understand you, and that’s OK. Just smile and ask someone else. Other people might be scared of helping you too much. If you’re older you can just let them know it’s OK to help you when you ask. You can let everyone know that.

If you can, stay close with the friends who support and love you at all times. As you grow up they will be the ones who really help you through the hard times in life. Trust me. No matter how long you’ve known them, they will be there. Like Hunter Hayes says in his song “Invisible,” “If you look past this moment, you’ll see you’ve got a friend, waving a flag for all you are and all you’re gonna do.” I’d recommend listening to this song if you ever feel alone; it has helped me a lot.

-A Young Adult With CP

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.