Writer and blogger Nicole Luongo recalls what her life was like before undergoing groundbreaking surgery.
My entire life I sat on the sidelines at social events—parties, proms, weddings–because I have cerebral palsy. While I usually never let CP stop me from doing anything, it stopped me from dancing. I was too self-conscious, too stiff, too unsure of how I would move. Falling was my greatest fear.
It was at the age of three that shoes became my symbol of hope. I slipped my hands through shoes—belonging to my parents or 10 older siblings—and crawled throughout the house on my hands and knees. I didn’t give up, paved my own path and figured out a way to walk. This taught me an important lesson that shaped the rest of my life: Anything is possible with determination and a positive attitude.
An orthopedic surgeon lengthened my Achilles tendons when I was four and a half years old. After walking in other people’s shoes during the primary years of my life, I finally learned to walk on my own two feet. As I grew older, I realized how having cerebral palsy made me different from everyone else. I couldn’t go up and down stairs without assistance. I couldn’t ride a bike. I couldn’t play sports. I was bullied at school and stared at in public.
As an adult, I began to experience more problems associated with CP. My back hurt, and I tired easily when walking. Throughout adolescence and into adulthood, doctors never told me about some of the well-known treatments such as Baclofen and Botox. They also never suggested the benefits of physical therapy—which I discovered on my own—at age 33. Two years later, I couldn’t step up curbs with my right leg. This continued to be such a problem that I asked my orthopedist for a cane. I couldn’t bring myself to use it. Instead, I avoided curbs and got a handicapped license plate. I struggled for four more years. I didn’t know there was a surgery that could help me.
Selective dorsal rhizotomy (SDR) is the only surgical procedure that can permanently remove spasticity (abnormal muscle tightness) caused by cerebral palsy. SDR is often misunderstood and scrutinized, however, it has a 100-year-old history. Why didn’t doctors tell me about this life-changing surgery? I found out about it by accident — thanks to Facebook — and there are thousands like me around the world who never would have known about SDR without the internet or word of mouth. This is unacceptable. The cerebral palsy community deserves much better.
At nearly 40 years old, I had SDR with Dr. T.S. Park, a world-renowned neurosurgeon at St. Louis Children’s Hospital, acclaimed for the minimally invasive technique he’s used on more than 2,800 patients worldwide. Dr. Park predicted SDR would allow me to move with greater ease, walk with less effort and check off the number one goal on my post-SDR bucket list: ride a two-wheel bike.
It’s been over a year since I had SDR. The spasticity in my legs is gone! I walk much smoother and straighter (no more bent knees) with heel-toe motion (instead of striking the floor with my toes first), no longer leaning to one side, and both legs are even, eliminating the need for ugly shoe inserts. I tried rock climbing for the first time, began ballroom dancing again and attended iCan Bike camp—on my 41st birthday—to learn how to ride a bike!
My SDR journey has been amazing. It is teaching me to stop believing in limits and focus on possibilities. SDR made things most people take for granted easier for me. SDR made some things achievable. Now, I can walk up and down stairs without help. Although each case is different, I am living proof of what SDR can do. I advocate and raise awareness for SDR because it changes lives. I want everyone with cerebral palsy to have the opportunity to get new legs like I did. If they get the chance to sit it out or dance, I hope they dance!
There is no cure for cerebral palsy. Selective dorsal rhizotomy is the only proven procedure that can remove spasticity caused by CP. SDR provides a better quality of life to adults and children who qualify for it. People with CP should not have to sit on the sidelines of life and we shouldn’t have to stumble upon this life-changing surgery. SDR needs to be recognized as a successful treatment for cerebral palsy—and, most importantly—the medical community must rise to its responsibility to share SDR with doctors and patients.
This article was originally published by The Huffington Post. Reprinted with author’s permission.
Feature photo and video courtesy of author.