After 20 years of living with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), David Jayne can’t speak and is immobile except for minimal facial movement.
But he’s able to communicate, drive his wheelchair, maintain his independence and control his environment — all thanks to his Toshiba Tecra laptop.
An ardent disability rights activist and father of two, Jayne’s typical day consists of answering e-mails and writing his autobiography. A former stock broker, the Rex, Ga., resident also trades options and manages RespiteMatch.com, a home health care Web site that connects caregivers and consumers.
Several years ago, Jayne organized and led a fight against the Medicare “homebound” restriction for people receiving home health care services, resulting in national legislation to study the issue (see MDA/ALS Newsmagazine, July 2004). He continues to be a high-profile champion of issues concerning people with ALS and other neuromuscular diseases.
To do all this, Jayne, 46, relies on a ventilator and feeding tube for air and nourishment. Then his laptop takes it from there.
Jayne sends commands to the computer via a fiber optics switch mounted on his eyeglasses, which he activates by raising his eyebrow and “doing my best Groucho Marx impression,” he says.
When Jayne activates the switch, manufactured by Adaptive Switch Laboratories, it begins “switch scanning,” or highlighting various options sequentially on the laptop screen. He activates the switch again when the desired option is highlighted.
|David Jayne with John Anschutz, who collaborated with Jayne on the system|
Jayne’s laptop uses adaptive software called EZ Keys XP from Words+, which enables him to operate any Windows program, including the Internet and several other applications. He also can reboot the computer or turn it off with EZ Keys, but relies on a caregiver to turn on the laptop each morning.
The software enables Jayne to compose and send e-mails, and write speeches and presentations.
“The advantages are too numerous to list,” Jayne says via e-mail. “I would practically be a vegetable without communication, and I wouldn’t have any independence. This computer-based communication system has empowered me to be an involved father and productive citizen.”
EZ Keys has several features that helps speed communication. It can be operated with a mouse, joystick, keyboard, Morse code or switch.
“With a computer-based [communication] system, the possibilities are limitless,” Jayne says, noting he’s not “boxed in by a dedicated communication system, which is pervasive in the marketplace.”
(A “dedicated” speech communication device, the only kind Medicare will pay for, doesn’t allow Internet and e-mail access.)
EZ Keys offers text-to-speech capabilities. The spoken words are generated by the speech synthesizer program AT&T Natural Voices, a Windows-based program that interfaces with any PC. Jayne says, “It actually sounds more human than anything else available.”
Sampled from real human speech, the program offers several male and female synthetic voices from which to choose. Visit www.words-plus.com to hear some samples.
EZ Keys also offers a voice feature called SideTalk, which enables quick construction of sentences and messages on a screen that resembles a blank Microsoft Word document.
Jayne relies heavily on the software’s ability to prepare and save text for future use, noting, “I use this feature to give speeches, which is great because I never forget a line or have verbal pauses!”
In conjunction with the laptop and EZ Keys software, Jayne uses a Sierra Wireless AirCard to access the Internet and e-mail while he’s away from home. The phone card acts as a cell phone, enabling him to receive and make phone calls, as well as send and receive text messages.
The phone card fits into the laptop’s PC card slot and connects to the Internet via Jayne’s cell phone provider’s cellular data network. Through T-Mobile, the phone card is under $100 and sometimes free with monthly phone service, says Jayne, who received the accompanying software as part of the service package.
He cautions, however, that using the cell phone feature has been “somewhat more labor-intensive than I would like it to be.” Jayne has encouraged Words+ to integrate a phone card into EZ Keys, and to simplify phone operation with enhanced programming and keyboard commands.
“Conversations are difficult due to the lack of spontaneous responses on my end,” he wrote. “But, the ability to initiate and receive text messages in this wireless phone world is a tremendously powerful tool as a safety feature, and enables me to instantly access business contacts and friends. It’s been incredibly empowering.”
EZ Keys also offers environmental control options.
Jayne uses the Words+ U-Control III universal remote, connected to the laptop through a USB port, to control all appliances, such as his TV, DVD player, ceiling fans and door opener. Users can train the remote to perform virtually all the functions of an appliance’s original remote.
Using his home’s existing electrical wiring, Jayne’s remote also sends signals to X10 devices, which enable wireless control of anything powered by electricity.
The true genius of Jayne’s computer system is its ability to drive his wheelchair.
More than two years ago, Jayne lost the ability to safely control his Invacare wheelchair with the original five-switch system.
“The loss of independent mobility was excellent motivation to develop a solution,” he says.
Jayne can’t move his head, so looking at a traditional wheelchair scanner with a small display monitor off to his right wasn’t an option. He also wasn’t impressed by the expensive, slow, off-the-shelf scanning systems that don’t step scan.
(Step scanning allows for faster operation because the software scans rows of characters rather than each individual character. When the row containing the desired character is reached, the user activates the switch to scan each character in that row only.)
Jayne considered the ERICA eye-tracking system from Eye Response Technologies, but it didn’t work effectively for him in different lighting without recalibrating the camera.
“I can’t control my head, so it’s positioned with headrests to look forward. One day, staring at the laptop screen, I had an epiphany — enable the laptop to communicate with the chair’s computer.”
It took him a while to find a way to do this, but thanks to a friend who discovered a USB digital input/output module that communicates the laptop’s commands to the chair’s computer, Jayne’s been on the move again since September.
“He wanted a display that took up the whole screen on his laptop and that had really large items,” said John Anschutz, manager of the Shepherd Center’s assistive technology center who helped Jayne develop the system.
Anschutz modified the USB device to work with Jayne’s switch, and wrote the step-scanning drive software, which displays the wheelchair’s functions and a directional grid on the screen. The drive choices are arranged within an octagon shape, resembling a stop sign.
To view the wheelchair functions, Jayne switches from communication mode in EZ Keys to drive mode by opening the drive software (a minimized window). While running the drive software, however, he can’t use EZ Keys to communicate, which is the limitation of having only one switch. Once Jayne minimizes the drive software window, he’s back in communication mode.
Jayne says his system provides efficient access for single-switch users, and that it’s more accurate and easier to drive with the directional grid.
“The scanning driving system has restored my mobility, enabling me to embark on an endless list of independent activities,” he says. “I’m driving better than I ever have!”
Jayne notes that one possible disadvantage to his one-of-a-kind setup is that it runs on a Windows operating system, which could crash while driving. This hasn’t happened, but just in case, Jayne has an additional switch that will disable the chair and prevent a disaster.
“It’s tremendously convenient to operate all systems from the laptop, including communication, environmental controls, cell phone, Internet, e-mail, chair functions and mobility,” Jayne says. “If an individual uses an augmentative communication system that incorporates a laptop, I definitely recommend this system because of the sophistication and ease of use.”
To learn more about Jayne’s customized computer system, e-mail him at firstname.lastname@example.org.
Adaptive Switch Laboratories