Nicole Luongo has always wanted to learn to ride a bike. However, her cerebral palsy kept her from achieving that goal for nearly four decades. A controversial surgery called SDR changed everything for the woman who can now not only ride a two-wheel bike, but also goes jogging, rock climbing, and even ballroom dancing.
Nicole Luongo was 40-years-old before she learned about the surgery that changed her life. Luongo is now an advocate for the procedure. She says that she literally stumbled across the information about SDR and that she doesn’t want that to happen to anyone else struggling to live with the pain and restrictions of cerebral palsy.
“I would have never found out about SDR if I hadn’t literally stumbled on the information. I don’t want that to happen to anyone else.”
The Huffington Post says that Nicole had a number of struggles associated with her cerebral palsy that all but disappeared after the controversial surgery, which involves cutting the sensory nerve fibers that enter the spinal cord.
“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.”
According to Nicole, selective dorsal rhizotomy (SDR) is the only surgical procedure that can permanently remove spasticity (abnormal muscle tightness) caused by cerebral palsy. However, there is a heavy stigma over the surgery as it can result in spinal fluid leakage, paralysis of the legs and bladder, impotence, and sensory loss. Though there are risks, as with any surgery, Nicole says the benefits outweighed the risks as she was already struggling with everyday activities. Therefore, she says it is unfortunate that cerebral palsy patients aren’t told about the procedure by their doctors and must find the information on their own.
“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.”
Just six months after her surgery, Nicole went from being unable to walk up stairs alone to doing the foxtrot in her ballroom dancing class. Nicole also graduated from bike camp and is now wheeling away through the streets on her bike, that is, when she isn’t practicing her rock-climbing.
What do you think of Nicole Luongo’s amazing story of overcoming the restrictions of her cerebral palsy?