KEEPING IT REAL: Jocelyn’s Story

Tue 09 Jun 2020

Our Director of Communications, Jocelyn Cohen, shares how the pandemic has impacted her movement.

KEEPING IT REAL: Jocelyn's Story*
By Jocelyn Cohen

The way it feels to move with cerebral palsy is different for every single person with cerebral palsy. This is how it feels for me on a normal day: tight, exhausting, and a bit unstable, sometimes painful, usually bearable. And I have to keep moving to keep up my hard-earned strength and relative flexibility. 

The pandemic put a hard stop on my physical therapy — which I’d been getting regularly for four years — and because I’m not commuting, I’m moving way less than usual.

L-R: Jocelyn and Rachelle after Jocelyn's presentation
to Columbia University PT students.

Over the last three months, my legs have gotten progressively tighter, pulling my hips, back, shoulders, and neck. Everything’s connected, and it’s all so uncomfortable. And since I can’t isolate certain muscles because of the brain injury that caused my CP, I can’t effectively stretch the muscles that are causing me the most discomfort. 

When I finally started moving again within my apartment building, my legs ached for days afterward and I knew I had to do something. This week, I headed to physical therapy for the first time since mid-March. I breathed deeply (through a mask) to get through the burn of each stretch for nearly an hour, and then I used a seated bike to pedal for two miles.

I feel so much better and I’ll keep going and I’ll keep moving because I have to. I hope you will, too, and that you’ll tell your friends to join you. Because there are 18 million other people like me — and so many of them are missing out on what they need.

Thanks for being part of this powerful movement with me.

 

Jocelyn'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.

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.