Thanks to advances in assistive technology, there’s a world of innovative ways to control your power wheelchair and stay active on four wheels.
Planning for change
From the outset, work with your health care team — physician, physical therapist (PT), occupational therapist (OT) and a reliable rehab technology supplier — to select a wheelchair with expandable electronics.
“The disease changes so quickly, but it helps to plan ahead,” says Jenny Robison, a PT and certified assistive technology practitioner (ATP) at the MDA/ALS Center at Vanderbilt University Medical Center in Nashville, Tenn. “We can find ways for people to drive their chairs for a long time.”
Because it takes time to file for insurance and order new equipment, it’s important to keep the health care team apprised of any changes in your functional abilities, such as difficulty using the joystick. Otherwise the control method may become unsafe for you — and everyone who crosses your path — before a new system is in place. And it’s valuable to work with a new control system before it’s required full time.
Knees and jaws
| With patience, Steven Nichols keeps moving with his single-switch scanner.
After using a standard joystick and head array, Steven Nichols, a software engineer from Clifton, Va., now drives his Permobil chair via a single-switch scanning system manufactured by PG Drives Technology (www.pgdt.com), of Anaheim, Calif.
Nichols, who has some movement in his legs, activates the scanning system by squeezing his knee against a button. The system then scans through the various options — forward, right, reverse, left and menu (which accesses tilt, recline and seat elevation). The choices are displayed on an LCD screen attached to the right side of his wheelchair. When the scan reaches the desired option, Nichols presses and holds the knee button and the chair drives forward, turns, etc. His current scanning rate is set at .75 seconds.
“The advantages to using the system far outweigh any disadvantages,” says Nichols, 57, who hasn’t had arm, hand or shoulder movement since 1999. “It can be operated with very limited mobility and strength, it’s fully integrated so the user can drive and control all wheelchair functions, and it has a built-in alarm that beeps with each switch selection.”
Nichols admits that the scanning system requires patience while waiting for a desired option to appear, and any function other than straight-line driving is extremely slow.
Still, he says, “With this system, I’m able to move freely inside and outside of the house without assistance, which is a key to maintaining independence.”
| Jack Hurst flexes his jaw muscle to drive his chair.
Jack Hurst of Marietta, Ga., received an ALS diagnosis in March 1987 and used a manual wheelchair for 18 years before switching to an Invacare TDX3 power chair in November 2006.
Hurst, 69, now uses a single-switch scanner from Adaptive Switch Laboratories (www.asl-inc.com), of Spicewood, Texas, that’s operated with an EMG (electromyographic) switch. The switch is attached to his face using an electrode and sensor sticker, and reads the impulses from his jaw muscle to drive.
To activate the system, Hurst flexes his jaw muscle, and when the indicator light reaches the desired selection, he bites down and holds to carry out the function.
Before settling on his current system, Hurst first tried a fiber optics switch, but it worked too well. Once he activated the switch and started driving, he couldn’t stop.
“I tried to control the fiber optic switch by smiling,” Hurst said. “I could start the wheelchair fine, but I couldn’t stop smiling to stop. That made me dangerous to myself and others.”
A customized solution
David Jayne of Rex, Ga., has used a power wheelchair since 1993. Two years ago when he lost the ability to safely control his Invacare wheelchair with the original five-switch system, he searched for customized controls.
“The loss of independent mobility was excellent motivation to develop a solution,” he says.
|David Jayne controls all wheelchair functions via his laptop.
Jayne, 46, can’t move his head, so looking at a small monitor to his right wasn’t a possibility. He 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 to look forward with headrests. One day, staring at the laptop screen, I had an epiphany — enable the laptop to communicate with the chair’s computer.”
It took him years 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 is on the move again.
Since September, he’s used step-scanning software which displays the wheelchair functions and a directional grid on his wheelchair-mounted laptop. To send commands, Jayne has a fiber optics switch mounted on his glasses, which he activates by raising his eyebrow and “doing my best Groucho Marx impression,” he says.
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.
“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.”
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.
“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!”
Special ALS packages
Systems range in price from $1,500 to $10,000, so it pays to look around and consult your health care team before buying.
Because it takes three or four months to receive equipment, start your research early, advises Jenny Lieberman, an OT and certified ATP at the MDA/ALS Center at Mount Sinai Hospital and Medical Center in New York City. She suggests exploring the latest innovations by trying equipment at disability expos, and testing controls with your clinic team.
Some companies have programs to assist people with progressive diseases like ALS. For example, Adaptive Switch Laboratories offers an ALS Drive Control package for $7,200. As the user’s abilities change, the company will provide different systems at no additional charge, swapping out a joystick for a head array, for example.
Switch-It, of Missouri City, Texas, offers a special five-year lease program for $5,600, which allows an individual to exchange an input device for another that’s more appropriate.
Besides your OT and PT, you can find local certified assistive technology practitioners and suppliers by visiting the Rehabilitation Engineering & Assistive Technology Society of North America’s Web site at resna.org and clicking on "AT/ATS/RET Directory” or by calling (703) 524-6686.
To locate certified rehab technology suppliers (CRTS) who provide complex rehab and AT products and services in your area, visit the National Registry of Rehabilitation Technology Suppliers at www.nrrts.org, or call (303) 948-1080.