Melissa Stains
09/22/09

My Personal Experience with Cerebral Palsy


During my lifetime I have faced several life changing experiences. However, the most profound experience was when I was diagnosed mild cerebral palsy. On a scale from one to ten my cerebral palsy was confirmed to be .1. Cerebral palsy is a condition cause by spastic paralysis do to brain damage.

My parents were concerned that I was not walking at the age of eighteen months old and crawling on my arms not using the left side of my body. My pediatrician Dr. Spevack referred me to an orthopedic specialist named Dr. Katz. After several MRIs and examinations I was diagnosed with Cerebral Palsy due to a stroke I had in uteral. This was cause by stress to my mother during the sickness and deaths (ten days apart) of her maternal grandfather and uncle. I was too young to be operated on and the doctor recommended a brace for my left foot and surgery when I reached six years of age.

After I got home from the doctors that afternoon my mother called her parents (my grandparents) to tell then what the outcome was. When both my grandparents answered the phone they could not accept the fact that I was diagnosed with mild Cerebral Palsy. Stating that it couldn’t be true and I didn’t have it. Not wanted to accept the fact that I did have it my grandparents did except it and was there for my 100%.

When I finally started walking at age two I had a slight limp. I was fitted with a left foot brace. I was fitted with a different brace each time my foot grew until age six. I remember going to Dr. Katz office once a week to check up on my foot. I cried every time I would step foot in that office. Every week it would be the same routine my mom would check me in at the front desk “Melissa Stains here for Dr. Katz”, we would then sit down in the waiting room. Crying my eyes out I would be screaming, yelling “Get me out of here” trying to pull my mom off the chair to make her leave. This continued every week up until surgery.

I remember sugary like it was yesterday. I went to Charlton hospital crying, screaming “I faked it I am fine I am fine!” However, I was not fine and knew I had to go on with the surgery. Sooner then I knew I was in a Johnny in a hospital room waiting for the anesthesiologist to give me the medication to put me to sleep. After waiting about an hour the anesthesiologist came in and gave me the sleep medicine. About a half hour the medicine had opposite effect on me instead of putting me to sleep it made me hyper. I remember climbing on the bars in the hospital room trying to run away from the doctor. The doctor then called more nurses and my parents in to calm me down so they can give me a different medication. It took seven people to pin me down (one doctor, four nurses, my mom and dad) to give me the new medication. Within a half hour on the new medication I had falling asleep.

It was now sugary time. The type of surgery was reconstructed sugary on my left foot where the doctor would cut open my right take out a tendon and cut open my left foot and put it in there, and stretch my left heel cord. The surgery took about an hour. My parents were crying in the waiting room praying everything would come back good. Right after surgery I was taking to the recovery room where I was going to wake up at. It took the nurses about a half hour to wake me up.

After waking up my parents were allowed to come into the room to see me. I was so happy to see them. Still they were crying I told them “Everything went fine no need to cry, I’m fine now”. After I said that my parents stopped crying and hugged me. I was in the hospital for a few days. My parents sat up with me from sun up to sun down and slept over. I was able to go home after five days in the hospital.

Getting out of the hospital Dr. Katz informed me that I would have to go to physical therapy to strengthen my foot. I went to physical therapy twice a week for six weeks. I would go in still down and have the physical therapist stretch my foot until it hard. Oh what pain I felt. The pain was mild on some days severe on other days. The days the therapist named Sue stretch my foot and I felt severe pain I would have tears starting to come down my cheeks. Sue was very nice however, so when she would ask or see me in pain she would stop and give me a break. I also had to ride on an exercise straighten my heel cord. No matter how bad it hurt I would do it anyways because one of the other therapists there said I would never ride I bike and I had to prove her wrong! Another exercise I did was I had to sit on a machine and push weights with my foot. Each week the weights would get heavier and heavier.

Not only did I have to do the exercises at physical therapy I also had to do some at home. The exercise I was told to do was standing on my left foot (lightly holding on to something) and hold it still for thirty seconds, the next exercise I had to do was toe lifts. Toe lifts are when you left your feet off the ground using your toes. I had to hold it for ten seconds on my toes and do thirty of them. The last exercise I would do at home was I would have my dad stretch my foot out before bed. He would stretch my foot two times thirty seconds each and joke about how his hands would smell because I have smelly feet.

Two weeks after surgery and doing my exercises Dr. Katz wanted to see me back in his office to check on my foot and how I was feeling. The first time I went there after surgery Dr. Katz was very impressed on my progress. He noticed that I was walking better and could stretch my foot a little but supposed to nothing. Still continuing going to physical therapy and doing my exercises at home I proved to one the physical therapist I can riding I bike. I was so excited to prove her wrong and to tell her I could do it I had my parents bring my bike to the therapy facility so I could ride it around the parking lot.

Showing the physical therapist I could ride my bike she apologized for saying I couldn’t and I forgave her. By that time when I proved I could ride a bike I had a month left of physical therapy. I went through the four weeks in less and less pain each day. When I finished physical therapy four weeks later I had no pain at all doing the exercises.

I still have mild weakness in my left foot today but you cannot tell unless I am tired, because sometimes I drag my foot. I still went on with life however. To keep my foot in shape I joined dance, the soccer team, and softball. My dance teacher did treat me different for the rest of the kids in my class when she noticed I would drag my foot if I got tired. She actually told my mother that I would probably not be as good as the other kids in my class. Being upset by this statement I practice my dance moves day in and day out so I could prove her wrong. From practicing I actually did prove her wrong and I was one of the dance students in the class. After noticing how well I do she apologized for being so rude to me.

My soccer and softball coaches were the understanding that when my leg gets tired some time I would limp. They treated me just like they treated the other kids and not judging me or feeling bad for me. Being treated like the other kids is what I wanted from everyone. In soccer and softball I would have to run just like the other kids but I could take a break if I needed to. I tried my hardest not to need a break however, if I did my coaches would still look at me and respect me as a normal children with nothing wrong.

Most people respect and look at me as a normal child today. However, I do have some people that feel bad for me, which I don’t really like. Most people that feel bad for me would say “Pick up your feet and stop dragging your left foot”. I would then reply with “Sorry but I do have mild Cerebral Palsy in my foot and tend to drag my left foot when I am tired”. They would immediately say “Oh my god I am so sorry, drag your foot it’s ok” or “Oh my god is there something I can do to help you get better, I’m sorry are you ok”? I would then reply with “Yes I am fine”. “I am a normal kid just like everyone else so please treat me the same as you treat others and don’t feel bad for me I hate that” After telling people that for the most part they understood but there are still a few people who still want to feel bad for me.

Having Cerebral Palsy did not really affect my life in a huge way. I was still able to do everyday things, I still had friends and I could do things most kids my age can do. However, my Cerebral Palsy has improved with the surgery. I am able to do the thing I did without having the surgery to doing things better with the surgery. I still feel like the same person nothing has changed. In fact, most people did not even realize I had Cerebral Palsy unless I told them. Most of the time, I actually forget I even have this condition because the surgery was such a success and because I only have mild (.1) Cerebral Palsy.

Although I didn’t think it was such a big deal having Cerebral Palsy I am glad I had family and friends understanding from being diagnosed with this all the way up to surgery. In fact if I didn’t have my families and friends support I wouldn’t probably be where I am today. If I didn’t have my family’s support I wouldn’t of had the surgery, or wouldn’t have rides to physical therapy. I am very grateful to have supporting friends and family like that.

I even want to thank the people who treated me differently, or felt bad for me. Such as, the dance teacher and physical therapist not believing in me. I want to thank then because they also pushed me to be the person I am today. Telling my mother that I probably wouldn’t be as good of a dancer as the kids in my class or be able to ride a bike made me practice and believe in myself that I could do it. What I really want to say is thank you for making me a stronger person. All in all I wanted to share my personal experience of having Cerebral Palsy with you. Telling you what I went through from surgery from how I was treated and what I had to go through to be the person I am today.