When home care nurse Karen Cafeo, RN, would visit her patient Michael Simmons, she felt his frustration. The 45-year-old with amyotrophic lateral sclerosis was a strapping man but the disease had progressed to the point that he only could make guttural sounds to communicate. He had tried the EyeMax System, a tool that helps people with speech difficulties communicate by staring at a letter on a screen to spell out words. But Simmons found it hard to concentrate enough to use it.
While at first his wife or mother could interpret what Simmons was trying to say when he made noises, their ability to do so was waning. Cafeo watched as Simmons simply gave up trying to be heard.
Cafeo, who works for Angela Hospice in Livonia, Mich., felt hopeless and frustrated herself. She could tell that “he wanted to say what he wanted to say.”
With a caseload ranging from 10 to 14 patients, Cafeo didn’t have much spare time, but this was one patient whose difficulty really got under her skin.
“With patients with ALS, there’s always something that I feel helpless about. But I kept thinking…there’s got to be something out there.”
Cafeo started searching the Web for communication tools for patients with ALS. She found a great deal of information but one particular article really caught her eye.
In it, Margaret Cotts an assistive technology specialist for Low Tech Solutions, described an inexpensive, easily made device that helps ALS patients communicate by using their head to point a laser attached to lightweight glasses or a cap at a communication board.
“I thought, ‘What a clever idea!'” Cafeo recalled.Simmons uses the laser pointer device to spell out what he wants to say.
Excited, Cafeo urged her husband, John, an engineer, to read the article. While he contemplated how to pull the communication device together, Cafeo started looking for parts. She found class 2 laser pointers — which would be safest for patients and their families because they wouldn’t damage their eyes — for $14 to $28 a piece at OfficeMax. The device also required a battery pack, four AA batteries, electrical tape and zip cord or speaker wire.
The pair learned the laser was best detached from the pointer and attached to a wire eyeglass frame.
“My husband took it (the laser) apart because it was too heavy to mount as is,” Cafeo explained.
They also wanted the laser to be adjustable so Simmons could move around rather than communicate from just one position. They used a bicycle mirror for this purpose. They took the mirror off, but attached the laser to the flexible undercarriage of the mirror, so regardless of whether Simmons was lying or sitting “he could access the board,” Cafeo said, “and get the laser right where he wants it.” The laser was attached to a battery pack that Simmons initially could turn on and off independently although he now relies on others to do that for him.
Cafeo then researched communication charts that would be most helpful for Simmons. A variety of places sell the boards, many online, and some for as little as $14.95 each. Cafeo found one she thought would be useful, and customized it by adding terms specifically for Simmons like the names of his wife, mother and dog.
The laser-mounted device was created by hand in an hour and a half for about $40, Cafeo said.
When completed, she could hardly wait to show it to Simmons.
“I was this excited person,” she said. “Like a kid in a candy store. I wanted it to work right away.”
When Cafeo brought out the communication device and showed it to Simmons, “he got this big grin.” His wife wasn’t home at the time, so the first thing he wrote using his board was “Mom, I love you.”
He’s used the communication tool regularly ever since.
Simmons loved the device, and several other Angela Hospice patients use the new device now, too.
“I probably would have been disappointed if he didn’t want to use it,” Cafeo admitted.
But then she might have jumped back on the Internet and found something else.
“I’m like the MacGyver of home care,” she laughed. “I’ve always got to figure out something that’ll work.”
For more information on the device, contact Karen Cafeo, RN, at [email protected]
Nancy Maleki, RN, is a freelance writer.