KEEPING IT REAL: Sarah’s Story, Part III

Fri 23 Jul 2021

Keeping It Real: Sarah's Story, Part III

We're featuring the third of several question-and-answer style blogs by Sarah Sweeney today.* Make sure you check back for additional posts soon, and in the meantime, you can find her on Faces of CP.

How has your disability changed throughout your life? 

As I have gotten older, I have experienced an increase in pain, especially in my legs. When I was eight years old, I had a pretty bad fall and got diagnosed with something called central pain syndrome. This causes heightened sensitivity to your central and sympathetic nervous systems. I have learned management as I’ve gotten older, but stress increases the symptoms. Also, as I have gotten older my muscle tone and tightness has increased in my legs. While cerebral palsy is not considered a progressive disability, it has definitely taken its toll as I have gotten older. It takes a lot more energy, awareness, and concentration to complete tasks. 

How will things change for people with disabilities? 

Heraclitus said, “The only thing that is constant is change.” Things are always changing for people with disabilities. There are groups and organizations, like the Statewide Independent Living Council, whose focus is to raise awareness about the various issues that individuals with disabilities face on a daily basis and bring that to the state and national level. You can only bring about change if you are able to raise awareness and educate yourself and others. Just by being out and living day-to-day life, we are able to open dialogue, raise awareness, and make change happen.

*Sarah'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, medical endorsement, or other 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.

Thu 11 Apr 2024

In the first part of our newest Science Spotlight blog, learn how scientists can harness electricity to help with movement disorders that sometimes accompany cerebral palsy.

Thu 04 Apr 2024

Check out the final part of Rindi and Soren’s story.