EXCLUSIVE: Mother With ALS Paints Again Using Eye-controlled Device
Life did not start out this way for 50-year-old Sarah Ezekiel. There was a time when she could talk and engage in conversations. There was a time when her hands could reach and touch people around her. There was a time when she could paint. But then ALS changed everything.Advertisement
Back in 2000, Sarah was given a diagnosis that nearly silenced her for life – the Motor neurone disease. Some people are more familiar with the other name – amyotrophic lateral sclerosis or ALS. According to the Motor Neurone Disease Association, the disease progressively attacks a person’s nerves in the brain and spinal cord.
The devastating result is that it affects the way you talk, walk, drink, eat and even breathe. It doesn’t just keep you from communicating, it makes it hard for you to move around as well. Sarah found herself losing control of her hands around the time her second child was only nine months old. Not only that, the disease took a toll on Sarah’s relationship with her husband. In fact, Sarah says her marriage had collapsed three years after her diagnosis.
It may have been a while since Sarah knew what normal was like, but she remembers that point in her life vividly. In fact, she remembers it so well it pains her that she couldn’t do for her second child what she had done for her eldest daughter.
“I couldn’t physically show him the love and affection that I gave my daughter. No cuddles or bedtime stories and it still breaks my heart,” she told Morning News USA in an exclusive interview.
Normal for Sarah also meant being able to paint.
“I remember before ALS, if I felt upset or down, everything would disappear when I was painting,” she recalled. Since her diagnosis, Sarah did everything she could to express herself again. For this, she turned to technology. And because of her condition, she needed something that doesn’t require her hands.
Luckily, a company came up with something that only needs her eyes. Tobii Dynavox is committed to developing effective tools for augmentative and alternate communication (AAC). They create solutions for individuals who have trouble with voice or movement. In fact, they’ve created computers that can be controlled by touch or by eyes.
According to the company’s President for the North American Market, Tara Rudnicki, there are over 7.5 million people in the U.S. who have no voice due to a speech impairment brought about by conditions such as cerebral palsy, stroke, traumatic brain injury or in Sarah’s case, ALS.
And among these individuals, only 1 of 20 have access to Tobii Dyanvox’s AAC devices. “Our greatest challenge is awareness. Although our technology is life changing, very few individuals actually even know this technology exists,” Tara said in an email to Morning News USA.
Awareness is also the goal behind the company’s latest campaign entitled “That 1 Moment.” In fact, That1Moment.com has been set up to recognize and celebrate the hard work of speech language pathologists, occupational therapists as well as augmentative and alternative communication professionals in helping speech-challenged individuals communicate for the first time or express themselves again. For Sarah, it was all about the latter.
For the campaign, Sarah had offered a painting entitled “Seize the Day” to become a greeting card anyone can send through the website. She had created this with the help of the Tobii Dynavox PCEye and Revelation Natural Art Software.
Sarah said Tobii Dynavox’s PCEye has been easy to use right from the beginning. Prior to using the PCEye, she was using a chin technology, which had found to giver her neck pain. And it wasn’t long after she was introduced to the PCEye that Sarah started painting again.
” It was the most amazing feeling and I couldn’t stop creating. I wanted to express everything that happened to me and everything I saw and it was a new lease of life for me. Even my surroundings seemed more colorful, like I was seeing with a new perspective,” Sarah said in describing her experience with PCEye.
According to Tara, getting started with their eye-controlled devices is really a matter of calibration. And once that happens, the fun begins.
“The tracker illuminates the users eyes with near-infrared light and from there, our camera picks up on the reflection of light from the eye. Our algorithms are then able to map the user’s gaze point to wherever on the screen they are looking, like X Y coordinates on a map.”
Moreover, the more a person uses the computer, the more familiar the software becomes to them. And these, in turn, result in shortcuts that make communication easier moving forward.
Today, Sarah still finds it hard to believe she has become an artist despite her diagnosis. Asked how she feels about being called one, she said, “I don’t really believe it to be honest. It was my dream to be an artist and Tobii Dynavox made it happen.”
Now, Sarah faces the world determined and more hopeful than ever. “It hasn’t been easy and I still have difficult times, but life is so precious and I think that we have to make the most of it,” she marveled.