Through its many volunteers and partners, the Pedal with Pete Foundation is active in supporting the cerebral palsy community in central Ohio. Recently Jamie Quisling, a member of the Foundation’s Board of Directors and a nurse at Nationwide Children’s Hospital, submitted the following article to the hospital’s CP Highlights Newsletter:
As the old saying goes, “time flies when you’re having fun”. I can certainly attest to that, with almost twenty years’ experience in pediatrics having worked in a variety of nursing roles at Nationwide Children’s Hospital. Since 2014, I have been a Pediatric Nurse Practitioner with the Acute & Regional Pain Service at Nationwide Children’s, caring for infants, children, and adults who require expert pain management due to acute illness, injury, or chronic conditions like Cerebral Palsy (CP).
I was born in Seoul, South Korea and adopted as an older infant by an American couple. I was raised in a small community in Ohio. At the age of six, I was diagnosed with cerebral palsy (left-sided hemiplegia) and subsequently had limited health care resources available to me related to CP management. In 2018, I became involved with Nationwide Children’s Adult Cerebral Palsy Clinic as a patient where it was discovered I have a rare condition known as Bilateral Schizencephaly, which is directly linked to my CP diagnosis. This rare condition should have had a more profound impact on my overall mental and physical state, but I have found it to be an inspiring part of my journey!
Compassion and drive have always been key traits of mine. Growing up in a small community, I did not always embrace having a physical disability or being Asian, but I now find it gratifying to use both my personal and professional experiences as someone living with CP. I can relate to individuals with physical challenges such as mobility, spasticity, or musculoskeletal pain that impact their daily activities of living. I personally have had multiple orthopedic surgeries to help improve my quality of life. Professionally, I care for individuals who are admitted to the hospital for a wide range of reasons including those who go through orthopedic surgeries to improve their wellbeing. For individuals with CP, the healing stages can prove to be challenging and can have an impact on pain control. My own CP history allows me a hyper-focused approach on how the body reacts to pain after surgical interventions. I often will let the patient and caregiver/parents know I have CP. My understanding of cerebral palsy’s impact both mentally and physically can help put them at ease. This benefits me, too; because of these interactions, I have become a better provider overall—not just for patients with a diagnosis of CP.
In recent years, I have recognized the lack of adult care providers who are well-versed in cerebral palsy. Personally, I have noticed that aging has not been kind: it’s different than in my 20s and it is more than the typical “just getting older” process. Last year the Cerebral Palsy Foundation presented a townhall meeting on adults aging with CP that explored how the aging process is more accelerated in individuals with CP. This was reported to be noticeable in persons ages 30s-40s where there can be a loss of mobility as well as movement problems related to rigidity, spasticity, or dystonia. Other factors such as bone changes (premature aging, arthritis, or joint changes), sleep quality, and changing pain symptoms are other challenges seen in adults aging with CP. A big key to success for persons aging with CP is EXERCISE! Exercise is medicine and can take many forms such as adaptive sports, aquatic therapy, active or passive range of motion, targeted resistance with exercise bands, yoga, or using a recumbent bicycle. Other therapies that could be helpful are massage therapy and acupuncture; these can be discussed with a medical provider. Certainly, more resources are needed for adults living with cerebral palsy, particularly in-light-of its impact on aging as well as the fact that more persons are growing older with CP. For those adults who are part of Nationwide Children’s Adult CP Program, we are extremely lucky to have a skilled and dedicated comprehensive team as not many of these programs exist within the United States!