|Communication is a lifeline for MDA ALS Division Co-Chair Augie Nieto, and he continues testing new ways to stay connected with the world.
Although ALS has robbed Augie Nieto of his ability to speak, Nieto’s “voice” continues to be heard as he leads the charge toward finding a cure.
Nieto, MDA ALS Division co-chair and founder of MDA’s Augie’s Quest ALS research initiative, spends hours on the computer, communicating with people around the globe and working to raise ALS awareness.
With the aid of his alternative, augmentative communication (AAC) device, Nieto’s also able to answer questions during media interviews and other public appearances.
For Nieto, who received a diagnosis of ALS in March 2005, “communication is everything.”
“It means being able to interact with my family, friends and colleagues,” Nieto, 51, wrote via e-mail. “Communication is what makes us human, and it’s what gives me the desire to continue living.”
Finding new ways to do it all
In 2006, as ALS began affecting his upper body strength and speech, Nieto began working with Computer Dx owner Troy Jurgensen, based in Corona del Mar, Calif., to find alternative computer access solutions. (From the collaboration, Computer Dx, launched a division dedicated to exploring communication tools and assistive technology solutions for people with ALS.)
For more than three years, Nieto has used a large, yellow trackball mouse to type with his feet. He currently types 40 words per minute. (For more, see “Let Your Feet Do the Talking,” March 2008.)
In conjunction with the foot mouse, Nieto uses the Dasher program to type e-mails and other documents. Dasher is a free, downloadable text-entry interface that’s operated by continuous pointing gestures called “zooming.” It features energy-saving features like word completion and remembering commonly used words.
Following the philosophy of always staying a few steps ahead of ALS, Nieto and Jurgensen recently started testing an alternative computer access method — eye-tracking technology. After trying other eye-tracking equipment, Nieto began using the Dynavox EyeMax in September 2008.
Changing from one communication access method to another should be gradual, so the person doesn’t feel overwhelmed, said Jurgensen.
“Our goal with Augie is that by the time he needs to make the change to using the EyeMax only, he will be very comfortable and proficient with it, as opposed to frustrated that he is having to learn something new … again.”
‘Eye’ toward success
Nieto’s been comfortable with the EyeMax from the outset, using it to generate speech, send e-mails, have video conferences via Skype (Internet phone access) and even write a book. But he hasn’t given up using the foot mouse with his desktop computer just yet.
“I know that at some point, I will no longer be able to control my foot, so I continue to use the DynaVox more and more to prepare for that day,” Nieto explained.
The EyeMax system has two parts — the Vmax speech-generating device (retail price is $8,420 for a dedicated/integrated version) and the EyeMax accessory ($7,000).
(Medicare only will fund dedicated, or speech-only, versions of communication systems, not integrated versions that also function as full computers. But virtually all such systems, including the Vmax, are available in dedicated versions that can be “unlocked,” or turned into integrated versions, usually for an additional fee paid by the user.)
When Nieto isn’t positioned in front of his desktop computer with the foot mouse, he’s on the move with the EyeMax mounted to his power wheelchair. The EyeMax includes an internal battery and draws from the same power source as the Vmax, making the device more portable and less cumbersome for the user.
Nieto uses the system about three to four hours a day, and hasn’t had any problems using it with his glasses. The EyeMax offers users multiple input methods, including dwell only, dwell-blink combination, blink only, and activation and selection with a switch. When Nieto is using the built-in EyeMax communication software, he prefers to make selections by blinking, and can type 20 words per minute.
Nieto recently finished work on his second book, Reciprocity Inc., writing for about three hours each day, sometimes using the desktop computer with the foot mouse and other times the EyeMax.
“It went very well,” Nieto wrote via e-mail. “The book should be published in the fall, and I could not imagine writing the book without the DynaVox product [EyeMax]!”
Nieto also appreciates that the system maintains calibration, even when he leaves the device’s eyegaze window and returns to it later. The device also works well in different lighting environments, he says.
Familiar software eases transition
In addition to using the EyeMax’s built-in communication software, Nieto still relies on Dasher for much of his text-input needs. Nieto’s comfort with Dasher has been crucial, Jurgensen said, because as his access method changes from the foot mouse to the EyeMax, the text-input software has stayed the same. The continuity has helped shorten the learning curve for the new equipment.
At this point in his transition, Nieto admits it’s easier to use Dasher with the foot mouse, but says it’s just going to take more practice with the EyeMax. And, Jurgensen is investigating a more specialized Dasher text-entry software that’s optimized for use with the Vmax software and EyeMax.
Unlike the EyeMax’s built-in communication software, Dasher doesn’t require a person to blink, dwell or activate a switch to make selections with their eyes, said Amy Roman, an augmentative communication specialist and speech-language pathologist based at the Forbes-Norris MDA/ALS Research Center in San Francisco.
Since Dasher is a zooming interface, Nieto simply passes his eyes through a letter box to select a letter to form words, phrases and sentences, explained Roman, who has worked with Nieto on his communication system.
The user chooses what to write by continuously zooming, which Roman says can be an advantage for eyegaze users who find blinking difficult or tiring.
In addition to Dasher, Nieto also uses the AlphaCore Midsize add-on software ($350), developed by Amy Roman, to quickly create sentences with the EyeMax. (This software only works with the Dynovox V and Vmax devices.)
“It gives me quick access to high-frequency vocabulary with a single selection,” Nieto wrote. “It also allows me to store phrases in various categories for easy access, and it lets me store photo and video albums so I can share favorite photos.”
AlphaCore implements a combination of alphabetized core words, keyboards, sentence starters and stored messages that help users gain access to rapid message construction, as well as seamless telephone, e-mail, IM, text messaging and Internet access with little navigation.
“This technology has given me the power of hope,” Nieto writes. “With my eyes, I can speak, send e-mail, watch TV, operate the computer and control my environment. I’m the preacher for technology tools that help people live versus preparing to die.”
Medicare will cover up to 80 percent of the cost for an AAC device, and MDA offers a one-time $2,000 grant for communication devices prescribed through its clinics. MDA also will provide $500 annually for repairs and modifications, including equipment/software upgrades. Be sure to visit a speech-language pathologist to find the communication system that’s right for you.