Canada

Nova Scotia mother with ALS uses eye-tracking technology to write her life story


Angela Parker-Brown may be unable to speak but that hasn’t stopped her from using her voice.


The mother from Truro, N.S., received a diagnosis for ALS in 2018, a disease that gradually paralyzes a person, affecting their motor skills and speech.


But with the help of technology that tracks her eye movements, Parker-Brown has been able to put her experiences into words, writing the memoir, “Writing With My Eyes: Staying Alive While Dying,” set to be released next month.


“What I hope people take away about ALS, or in any life-limiting disease, is to keep living,” Parker-Brown told CTV’s Your Morning on Monday. In order to more easily communicate, Parker-Brown received the interview questions beforehand so she could prepare her responses and play them for the segment.


“At times it’s difficult, but try to stay positive. Find something that makes you happy and do it. Find two or three things, even better. Go out of your way to make memories with loved ones.”


ALS, short for amyotrophic lateral sclerosis and sometimes referred to as Lou Gehrig’s disease, results in a person’s brain being unable to communicate with the muscles of the body, eventually limiting their ability to walk, talk, eat, swallow and breathe.


In order to communicate, Parker-Brown uses technology called PCEye by Tobii Dynavox, which tracks her eye movements and completes the words and sentences she needs to talk, text, browse the web, use social media, stream movies, and write, including poetry and now a book.


Through a Facebook group called “Angie’s ALS Journey,” Parker-Brown was able to post updates on her progression.


That writing, she said, became “therapeutic” for her and over time, she received messages encouraging her to write a book. “So I wrote a book,” she said.



A single mother to twin girls, Parker-Brown said she was upfront and honest, in an age-appropriate manner, 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 for living a “happy life.”


“Enjoy the little moments, as simple as a warm hug coupled with, ‘I love you,'” she said.


“Do not put limits on yourself or let others put limits on you. We are all capable of what we allow ourselves to believe we are capable of. Don’t allow traumatic secrets to damage your soul. Seek help.”


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