PEDS PATIENTS GROW UP: LIVING LIFE WITH CEREBRAL PALSY

Posted by vanessa on March 29, 2018

On Tuesday, March 20th, 2018, the PT Management of Pediatric Conditions class learned what it’s like to grow up with cerebral palsy (CP) and navigate the world with a disability. Dr. Lisa Yoon invited Jocelyn Cohen to share her experiences as an adult living with CP.  Jocelyn also explained how physical therapy changed her life. Accompanying her were Rachelle Nguyen, PT, DPT, Class of 2016, Jocelyn’s PT at SPEAR Physical Therapy and Amir Rand, PT, DPT, SPEAR’s Regional Director.

Jocelyn was diagnosed with cerebral palsy as an infant. She started early intervention physical therapy at her local UCP children’s center.  She described the pain of that early physical therapy. “As they stretched my legs, it felt like fire…”  and the awkwardness of those early, hard plastic leg braces.

However, she noted that she probably had a better experience than a lot of other kids with CP because she was among others who were just like her. “I wasn’t the only kid in those plastic braces who used a walker, she said.”

Life for Jocelyn was a combination of surgeries, doing normal childhood and teenage things, and having physical therapy several times a week at home and school.  Jocelyn commented that PT after surgeries was particularly painful because she was “dealing with quads that were cut through”. Any kind of quad stretch was agonizing, so she started stretching them herself because “it hurt less when I was controlling the pain.”  But life went on… she enjoyed her childhood; went to sleepaway camp, took art classes, swim classes, and traveled.

She had a supportive surgeon who treated her from childhood into adulthood until he died, at which point she was exposed to realities of a health care system in which few health care providers are willing to treat adults with CP. This is a frustrating reality for Jocelyn (now in her 30’s) and her friends with CP.  The fact is that CP is not fatal, so children with CP grow up to be adults with CP.

Jocelyn developed different symptoms over time such as back pain and balance issues that doctors attributed to “age” … that eventually led her to take up physical therapy again, which she abandoned at age 15. The search for a therapist led her to SPEAR Physical Therapy and ultimately to therapist Rachelle Nguyen, PT, DPT, CUDPT 2016.

Jocelyn’s full life includes a full time job, and a couple of part-time freelance gigs.  She goes to therapy twice a week with Rachelle, and commented on their relationship. “We’ve built a trust and a friendship because we’re in each other’s space so much.  She’s always looking for new ways to challenge me and improve my overall strength and function. Everyone should have someone like her on their side.”

Reflecting on her decision to return to PT, Jocelyn commented, “My feet lift easier, I’m better at catching myself when I trip, and I feel more confident. The best minutes of my week are the ones right after I’ve been stretched because I feel a little less spastic and a little more free.” 

For student Kyle Zreibe, Class of 2019, Jocelyn’s remarks about navigating the crowded streets of New York City resonated. "I have to think about every single step I take", she said.  “Her difficulties on a busy sidewalk are made worse because most of us are on our phones never paying attention. We need to be more aware of others in our daily activities.”   Leah Wylie, also Class of 2019 noted, “As a sibling of two adults with CP, I felt enormous gratitude for Jocelyn’s willingness to share her experience and input to help us all become better physical therapists."

Dr. Lisa Yoon said, “Jocelyn challenged the assumption that the pediatrics class is only important for those who are hoping to pursue a career in pediatric physical therapy. With humor and vivid descriptions of her personal experience, Jocelyn authenticates the message that kids with CP grow up to become adults with CP, with needs that all adults seeking outpatient services have – a body that needs help to run optimally.”

Looking back on her decision to re-embrace PT, Jocelyn concluded, “I can tell you it’s the best decision I’ve made in my life”.

 

L-R: Dr. Lisa Yoon (at podium), Drs. Amir Rand and Rachelle Nguyen, Jocelyn Cohen


 


 
Dr. Debra Krasinski, PT Program Director; Dr.Rachelle Nguyen, Jocelyn Cohen, Dr. Lisa Yoon
 








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