KEEPING IT REAL: K’s Story

KEEPING IT REAL: K's Story

By K Pleasant*

Living with CP has never hindered me from accomplishing anything I set out to do and there are no intentions of changing that.

Originally, Cerebral Palsy Positive was launched out of frustration at the lack of medical knowledge beyond pediatrics as a tool to enlighten others. By and large, the medical community considers CP a “pediatric” condition but defines it as a “lifelong” condition in the same breath. The majority of human life is spent BEYOND the pediatric realm, which to me makes it illogical that, until recently, the coexistence of the aging process & CP was ignored.

When things began changing for me a little over a decade ago, I wanted answers! Some orthopedic doctors I contacted didn’t bother to respond when I asked them about treating adults. Another ignored my description of the pain and stated, “You have tight hamstrings, we just have to deal with it.” Even though they’ve been tight my entire life…

Growing up, I was told that as long as I exercised to maintain flexibility, life would continue as I knew it. But this is only partially true. The CP itself isn’t getting worse, but the effect it has on our bodies is causing issues. Our bodies are built the same as everyone else’s but don’t operate the same, which leads to strain on hips, spine, joints, and more.

My quest for information has led me to become a member of the Cerebral Palsy Research Network (CPRN),which is establishing treatment centers nationwide. As a member of CPRN’s Community Advisory Committee, I realized there was more I could do beyond providing information. 

Enter: Cerebral Palsy Positive’s transformation. It’s now a startup nonprofit with a mission of narrowing the unjust healthcare gap between pediatrics and adulthood by supplementing medical transportation costs & paying telehealth copays. My goal with Cerebral Palsy Positive is to provide everyone challenged by CP the opportunity to live their BEST LIFE.

*K's story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.