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Supporting the ALS Community With AT
Assistive technology (AT) for computer access is a primary need for many individuals with ALS. Learn how AT Act Programs play an essential role. #ALSAwarenessMonth#ALSInThisTogether
Amyotrophic lateral sclerosis (ALS) is a disease of the nervous system that affects an estimated 15,000 people in the US (according to the Centers for Disease Control and Prevention). ALS is characterized by a progressive reduction in muscle control that advances differently among those affected, leading to paralysis and, frequently, complex communication needs. Approximately 5,000 people in the US receive an ALS diagnosis each year, usually between the ages of 55 and 75.
Most AT Act Programs have experience working with community members diagnosed with ALS, often for communication, mobility, and environmental control needs (as a person’s limitations develop and evolve). AT makes a profound difference in their quality of life. Below are anecdotes from three AT Act programs supporting community members with ALS in 2021, including links to the equipment and services.
Last year, Minnesota STAR assisted a 71-year-old man who was accustomed to using a mouse for a pointing device. His wife told the program: “Husband has some changes in his hands and he can no longer use them to control the mouse. We’ve been trying to figure out some way to help him because he doesn’t have much head control either.” Her husband had been trying different mouse options as his hands grew progressively weaker, determined to keep using his own iPad and computer. MN STAR staff knew it was important for him to maintain his routines and social connections. He was spending most of each day in a digital world. The device loan program allowed him to find what worked, in this case, a foot-controlled mouse. “He didn’t give up trying,” his wife reported, “because this is his outlet being confined to the house. He does stock trades each morning.”
The Boomer mouse provides foot control of an adjustable pointer, left and right-click functions, and is wireless and compatible with a PC, Mac, and tablets. MN Star provides an online device inventory for browsing, and loans equipment to anyone with a need to try it for up to four weeks and at no cost to the borrower. Items may be picked up or shipped (also no charge!)
Eye Gaze With a Speech-Generating Device
In New Mexico, a woman in her mid-50s needed a way to speak. With a prognosis of three months to live, she and her speech-language pathologist participated in a demonstration of various speech-generating devices provided by the NM Technology Assistance Program (NMTAP). She needed a system that would respond to movement from muscles she still controlled. After considering her options, she chose an eye gaze system with a speech-generating tablet computer. The system allowed her to use her eyes to open and close applications, write messages using an on-screen keyboard, and generate computer-voiced sentences. She borrowed the device and also a mount for independent access at the right level for her gaze. “She was able to communicate with her husband and loved ones up until the day she died,” reported the staff. “The quality of life this gave to her, and her family, is unmeasurable.”
PCEye is an eye tracker device available to borrow from the NM TAP online device inventory. It works with Windows computers and tablets, replacing both mouse and keyboard. It can be used in or out of doors, even in bright light. NM TAP loans devices for up to six weeks at a time and shipping is available.
A man with ALS and his occupational therapist reached out to the Vermont AT Program (VATP) for assistance with alternative access to his iOS devices. He was using the Kensington mouse with his foot on the floor while seated, but he could no longer tolerate sitting upright. When reclined, the Kensington mouse ball dislodges if mounted perpendicular to the floor. VATP staff brainstormed switch control with his feet but decided it may not be the easiest solution in the long term. Instead, he trialed sip and puff and head tracking on his iPad Pro and added his iPhone to the device controls. He learned how to navigate the systems immediately, independently answering phone calls and emails and engaging in entertainment.
The Orin Breeze is an electronic pressure sensor that converts sips and puffs (applied to the straw) into click selections (mouse or joystick emulations). Orin’s Gooseneck straw has a universal mount for securing to anything from table tops to wheelchairs for secure positioning. VATP loans equipment, including the Orin Breeze for up to four weeks at a time and provides free shipping.
The AT3 Center, the Association of AT Act Programs (ATAP), and the Administration on Community Living (ACL) make no endorsement, representation, or warranty expressed or implied for any product, device, or information set forth in this blog. The AT3 Center, ATAP, and ACL have not examined, reviewed, or tested any product or device hereto referred.
The Assistive Technology Act Technical Assistance and Training Center (AT3 Center) is a project funded under grant award #90ATT0003 by the U.S. Department of Health and Human Services Administration for Community Living (ACL). The AT3 Center provides technical assistance and support to AT Act Programs funded under Section 4 of the Assistive Technology Act of 1998, as amended (P.L. 108-364). The AT3 Center is a sponsored project of the Association of Assistive Technology Act Programs (ATAP). The information on this website does not necessarily reflect the position or policy of ACL, and no official endorsement should be inferred.
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