The production of assistive technology (AT) devices and vast technological advances, particularly in communication, have enabled people with ALS to enjoy greater independence, maintain relationships, and contribute to the workplace and the community.
Here’s a look at how computer technology and AT have helped enhance the quality of life for some people with ALS.
A link to the world
Elizabeth McCarthy of Erie, Pa., who received a diagnosis of ALS in 1979, said that without the use of her computer and EZ Keys communication software from Words+, she’d be isolated from her family and friends, and she’d have to depend on others to read the newspaper or answer e-mails.
McCarthy, 59, who uses the software to communicate with her caregiver, advises other people with ALS to consider an AAC device before they must use one regularly.
McCarthy, who operates her computer by the slight movement of an eye, also uses the computer as an environmental control unit (ECU), controlling virtually any appliance in her home.
Before she started using a DynaWrite device from DynaVox, Cheryl Cook of Webster Groves, Mo., used a Magna Doodle from Fisher Price to communicate her needs. She’d never used a computer before last summer, when she received a diagnosis of ALS.
“I can carry on a conversation, and I can type fairly fast, so it works out well for me,” she said of her DynaWrite. “I don’t feel so left out and isolated, and I can now answer the phone. Learning how to use e-mail allowed me to feel connected with others.”
Cook, 55, who works as a caregiver to an elderly woman, said, “not being able to express myself was like cutting off the essence of who I am.
“Before the communication aid, I didn’t answer the phone because no one understood what I was saying. With the machine, and the help of a good phone with a voice-enhancer, I can carry on conversations over the phone, which has made a big difference,” Cook explained.
She added, “It helps to be able to laugh, too. When I misspell a word and press “speak,” things come out pretty funny sometimes.”
My mind is strong
Computer technology and advances in AAC devices and access help people with ALS keep thinking, learning and working.
For example, Paul Carr of Hamden, Conn., director of quality management for United Healthcare, explained that his DynaWrite has enabled him to stay active in the work force and to communicate with his family.
“The device has enhanced my quality of life tremendously because without [it], I wouldn’t be able to sustain myself and the disease would take over much faster than it has,” Carr, 51, said.
With his DynaWrite, Carr attends meetings at work, shares his thoughts with co-workers and participates in business-related phone calls.
“Computer tech has enhanced our quality of life, and it’s enabled us to retain our self-esteem,” Carr said.
Steven Nichols, a software engineer from Clifton, Va., works as a part-time Web developer, thanks to
eye-tracking computer technology.
Nichols, 56, who hasn’t had arm, hand or shoulder movement since 1999, has used both the ERICA tablet PC system from Eye Response Technologies and Eyegaze from LC Technologies.
Nichols relies on the ERICA system because it’s portable and supports computer access without requiring a second computer like the Eyegaze system.
“Its [the ERICA system’s] effect has been immeasurable,” Nichols said. “It’s not only my communication device for everyday needs and conversation, but it’s my entertainment center and window to the world.”
Nichols also uses the system for Web site developing, financial tracking, investing, paying bills and playing games.
“It [eye technology] has come a long way since I first tried it in 2000,” Nichols explained. “The accuracy of the system is incredible, given the nuances of the eyes, and you can’t beat the speed of direct select over scanning systems.
“Assistive technology in general enables me to be a productive member of society, it affords me a great amount of independence, and it’s allowed me to be the Steven Nichols I was pre-ALS, with the obvious physical limitations.”
In the cards
Many people with ALS agree that computer technology and AAC devices have changed the hand they thought they’d been dealt when they started to lose the ability to speak or to use a computer mouse. Now an AT user can stay in the game.
And, advances in brain-computer interface technology have reshuffled the future; people may actually be able to use their thoughts to control computers and other devices, and communicate verbally.
Roger Surfus of Shell Knob, Mo., who received a diagnosis of ALS in November 2005, uses a Mercury II computer/AAC device. The retired aerospace technical specialist said, “Using your thoughts to control devices for communication would be an excellent advancement” because AAC devices still can’t replicate normal verbal communication.
“Inside, my brain still thinks clearly, and I still feel as sharp as ever,” Surfus, 59, explained. “My brain is functioning at 90 miles per hour, so computer technology will be my saving grace as the disease progresses.”