Angela Parker-Brown may be unable to speak, but that hasn’t stopped her from using her voice.
The mother from Truro, Nova Scotia was diagnosed with ALS in 2018, a condition that gradually paralyzes a person, affecting their motor skills and speech.
But with the help of technology that tracks her eye movements, Parker-Brown was able to put her experiences into words by penning the memoir “Writing With My Eyes: Staying Alive While Dying,” which will be released next month.
“What I hope people take away from ALS, or any life-limiting disease, is to get on with life,” Parker-Brown told CTV’s Your Morning Monday. In order to communicate more easily, Parker-Brown received the interview questions ahead of time so she could prepare her answers and act them out for the segment.
“Sometimes it’s hard, but try to stay positive. Find something that makes you happy and do it. Find two or three things, even better. Do everything you can to create memories with your loved ones.”
ALS, short for amyotrophic lateral sclerosis and sometimes called Lou Gehrig’s disease, prevents a person’s brain from communicating with the muscles of the body, which eventually limits their ability to walk, talk, eat, swallow and breathe.
In order to communicate, Parker-Brown uses a technology called PCEye from Tobii Dynavox, which tracks her eye movements and completes the words and phrases she needs to speak, text, browse the web, use social media, broadcast films and writing, including poetry. and now a book.
Through a Facebook group called “Angie’s ALS Journey,” Parker-Brown was able to post updates on her progress.
This writing, she says, became “therapeutic” for her and over time she received messages encouraging her to write a book. “So I wrote a book,” she said.
Single mother of twin girls, Parker-Brown said she was upfront and honest, in an age-appropriate way, with them about her situation.
“I encourage them to always ask me questions and I do my best to keep them informed of any changes,” she said. “I like the no-surprises approach.”
Among the things Parker-Brown hopes readers take away from her book is the importance of family, friendships and community to living a “happy life.”
“Enjoy the little moments, as simple as a warm hug coupled with ‘I love you,'” she said.
“Don’t set limits on yourself or let others set limits on you. We are all capable of what we allow ourselves to believe we are capable of. Don’t let traumatic secrets damage your soul. Ask for help .”