Lisa’s voice is weaker than it was in 2014 when she was first diagnosed with ALS.
Commonly known as Lou Gehrig’s Disease, ALS affects the parts of the nervous system that control voluntary muscle movement, including the ability to speak.
Pine Tree Society’s Communication Pathways team is helping Lisa create a message bank so when she’s no longer able to speak, she’ll still be able to communicate in her own voice using a specialized computer.
“We are experts in this area and take our job to heart,” said Linda Bonnar, MA, CCC-SLP, ATP director of Communication Pathways. “When ALS starts affecting a person’s voice and ability to communicate, our goal is to be sure they can continue to communicate and say what they want to say. Our job is to empower and keep the doors open for people so they can stay as independent and socially connected as possible.”
For Lisa, eye-tracking technology is the perfect fit. Through the use of eye motion, she’ll be able to select words, letters and icons on a device to communicate what she wishes to say from her personalized message bank.
Eye gaze, or eye tracking, is technology that is used for people who are unable to physically move a mouse themselves. A special camera picks up light reflections from their pupils and translates that movement into the movement of their mouse cursor. They can then select the item they are looking at by “dwelling” or staring at the screen for a length of time, blinking or clicking with a switch.
“People with ALS need to get this device, the sooner the better,” said Lisa. “They need to know to start earlier while they still have their voice.”
For someone who has lost the ability to speak, being able to have a way to communicate in their own voice is very empowering and is also irreplaceable for loved ones.
“The voice banking will sound like her,” noted Lisa’s partner Jeff. After she’s lost her voice, he’ll still be able to hear her say “I love you,” ask how his day was and let him know what she needs. “We’re doing everything we can to be proactive before she completely loses her voice. Anything that can help, we want to try.”
“Everybody has the right to make sure their opinions, needs and wants are known to others,” continued Bonnar. “If someone is guessing and assuming what you want, that can be very frustrating. Having the ability to use a device with a message bank in your own voice is extremely powerful, for the individual and their loved ones.”