I am Eyegaze Users
living with ALS
My advice to newcomers is get your Eyegaze communication device as early as you can. Learn how to use it.
Eye Gaze Technology Panel April 29, 2024 Recap
See video here: https://www.youtube.com/watch?v=T8Ui8woBzcU
Why Eyegaze technology is vital to survival of a person living with ALS.
The sentiment behind “I love you” evokes strong emotions when spoken by a person compared to when it resonates from a computerized voice. For individuals affected by ALS, opting for voice banking and incorporating Eyegaze technology into their lives can redefine communication dynamics between them and with their loved ones as the condition gradually robs them of their speech abilities.
Charlie, a person living with ALS who uses Eyegaze, shared, “If you still have a voice, voice bank your voice while you still can so you can use your own voice on your communication device when you speak. It’s not necessarily for you but for your family and friends. I use the Microsoft David voice because I didn’t voice bank my voice. It sounds nothing like my voice. My wife wants to hear, ‘I love you’ in my voice, not a stranger’s voice.”
Once you notice your voice weakening, begin exploring various technologies with your speech therapist. Delaying action on your communication needs could have grave consequences. Act now; it’s crucial for your survival.
Charlie further stated, “My advice to newcomers is get your Eyegaze communication device as early as you can. Learn how to use it. If you don’t know how to use a computer, learn. Procrastination is a killer when you have ALS.”
ALS can impair speech but not a person’s ability to think and communicate. Eyegaze technology allows individuals to communicate by selecting letters, words, or phrases on a screen using only their eye movements. This enables them to converse with others, express their needs, and engage in social interactions. Neglecting to address your communication needs promptly could have fatal repercussions. The resounding message from our panelist was to take action promptly; it’s imperative for your well-being
Eyegaze technology can empower individuals living with ALS in various ways beyond communication.
It allows the user to control various devices, such as computers, tablets, smartphones, and environmental control systems. By tracking eye movements, individuals can navigate through menus, browse the internet, send emails, and operate smart home devices, enhancing their independence and quality of life. Eyegaze technology can be used to operate power wheelchairs, work with researchers, and be an active member of society. Pat, another panel member who uses Eyegaze daily, shared that his work with Steve Gleason, who invested in Eyegaze technology to make it go beyond basic communication, is vital to his own survival and mental well-being.
Eye gaze also allows the user to access a wealth of information online, including news, entertainment, educational resources, and social media platforms. This enables the user to stay informed, entertained, and connected with the world around them.
This technology also provides opportunities for creative expression, allowing individuals to engage in activities such as digital art, music composition, writing, and gaming. This promotes cognitive stimulation, self-expression, and emotional well-being. Scott, another Eyegaze user and podcaster, uses his Eyegaze device to create beautiful art; some of which is currently being showcased at an art show in San Francisco.
Overall, Eyegaze technology serves as a powerful tool for individuals living with ALS, empowering them to communicate, interact with their environment, and maintain a sense of autonomy and agency despite physical limitations.
Yet, like any technology, Eyegaze technology comes with its own set of limitations and hurdles. Instructing family members and caregivers on how to address issues when the Eyegaze device or computer malfunctions can prove frustrating for both the user and their caregivers. Furthermore, depending solely on this technology can present challenges during medical emergencies.
Panelists shared that despite having their computer accessible, they have had to educate their caregivers on interpreting facial expressions for signaling when assistance is required for airway or vent clearing, or to summon a loved one. This proactive measure is necessary as transitioning between applications to access the communicator may take time, or the eye gaze device might not function reliably. Moreover, during instances of choking or airway obstruction, focusing on typing becomes nearly impossible!
Eyegaze technology empowers individuals with ALS to retain a sense of independence and control over their environment. By controlling devices, accessing information, and performing tasks using only their eyes, they can reduce reliance on caregivers and maintain a higher level of autonomy.
As ALS progresses and physical abilities decline, Eyegaze technology remains adaptable and accessible. It can be customized to accommodate changing needs and preferences, ensuring continued functionality and usability as the condition advances.
Overall, Eyegaze technology offers individuals with ALS a means to overcome communication barriers, maintain independence, enhance their quality of life, adapt to changing abilities, and ensure safety, making it a valuable consideration for those living with ALS.
Click here join the next EyeGaze Panel Part 2 on May 13th from 6:30-7:45 PM ET
https://www.iamals.org/action/eyegaze-panel-part-two/
-I AM ALS’ The Write Stuff Community Team
