"I knew nothing about ALS, but now going into 14 years I can't say that I know every detail, but I know quite a bit now."
Chanda Brigance has been with her husband, former Baltimore Raven O.J. Brigance's side since he was diagnosed with ALS.
Together they founded the Brigance Brigade Foundation to help families living with ALS in 2008.
Not only has she learned a lot about Lou Gehrig's Disease, but she's mastered the art of being a caregiver.
"You can't be a selfish person when you're a caregiver, because you're giving so much of yourself and your time, all that is within you pouring out to give that care because it's that important."
A lifestyle that's so important she put a pen to paper with a book called 'Who Cares?' It's the first from the collection CHAN IS A CAREGIVER.
"They are all true stories. The first book is about me caring for this cute little energetic boy with ALS."
Through colorful illustrations and kid friendly writing she introduces herself as Chan the caregiver She's a CALS
“A CALS is a caregiver to someone living with ALS.”
The readers meet her friend REN, he's her PALS...that's a person living with ALS. She explains that REN, like OJ, can't walk, talk, or breath on his own.
The disease affected the nerve cells in his brain and spinal cord weakening his muscles. Chan is more than REN's friend...she's his caregiver with a special message for children.
"If we start early teaching our kids as they grow they will grow knowing that it's okay if someone looks different. I can still help them, they're still friendly. They still can be a friend."
A friend that someone in need really counts on. Brigance says unfortunately the caregivers role is often overlooked.
She's been OJ's primary caregiver since he was diagnosed in 2007. Now they hope her book, "Who Cares," will shine a spotlight on how critical that role really is to someone with ALS or any other disability.
"Other than you, OJ is probably your biggest critic. What does he think about the book?
"He loves it. He really really enjoys it. He's happy for me. He's happy that I'm really doing something that I can talk about that I'm really doing and living and this is caregiving!"
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