Better world at the tip of his tongue

Wednesday, February 03, 1999

Better world at the tip of his tongue

High-tech devices enable disabled people, such as Norman Haverkos, to communicate and perform everyday tasks

Norman Haverkos, 68, has MS but is able to access his computer with a Tongue Touch Keypad.
(Yoni Pozner photo)
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Here's the amazing part of this technological tale:

Before I arrived at Beechwood Home in Hyde Park, 68-year-old Norman Haverkos had logged onto the Internet, found the newAbilities Web site and printed out four informational pages about a device called UCS 1000.

He did all that — activated the computer, got online, searched and printed — with his tongue.

INFOGRAPHIC

How it works

Welcome to what happens when the world of technology meets people like Mr. Haverkos, a retired electrical engineer who until last year had watched his life slip away from the effects of 35 years of multiple sclerosis.

Now, the UCS 1000's infrared sensors, radio waves, transmitters, a battery-operated device that fits inside the mouth and an all-purpose on-screen menu attached to his wheelchair have revitalized Mr. Haverkos' world.

The UCS 1000 uses several high tech systems.
(Yoni Pozner photo)
| ZOOM |

Activated by his tongue
He's performing seemingly mundane but formerly impossible tasks via technology, and his fellow residents at Beechwood are recouping old skills or learning new ones, thanks to a growing number of high-tech devices, computers and software programs.

In the roof of Mr. Haverkos' mouth sits a retainer-like plate with nine sensors, the UCS 1000 Tongue Touch Keypad. By touching one of the sensors with his tongue, Mr. Haverkos can access a computer screen that allows him to operate, again with his tongue, most of the electrical appliances in his room — lights, door, nurse call light, radio, computer, TV, VCR and telephone.

A voice-activated device allows him to raise and lower his bed (“Raise head,” he says to a monitor that's suspended near his pillow, and the head of the bed ratchets up automatically).

“It's almost like being able to walk again,” says Mr. Haverkos, whose physical movement is limited to his right hand and his head. “I can do things I haven't been able to do for myself in years. Until I got this, I struggled with things and had to get somebody to do everything for me.”

Independence is a goal at Beechwood, one of only three private, non-profit nursing homes in the United States specializing in long-term care for adults with incurable diagnoses — primarily multiple sclerosis, cerebral palsy, rheumatoid arthritis, spinal cord injury, brain trauma and others. (The other two homes are in Boston and Philadelphia).

The average stay at Beechwood is 8.2 years. The average age is 54 for residents, 98 percent of whom are in wheelchairs. Mr. Haverkos has been a resident since 1985.

Giving residents a voice
Because of a commitment to technology by Beechwood's therapists and its director, Thomas F. Grimes Jr., residents are exploring their world in new ways:

• People with limited or no use of their hands are operating computers and icon keyboards using a “head mouse,” a tiny light-emitting sensor stuck to the forehead or eyeglass frames and pointed at a computer screen. The timed light activates the computer to click and drag, just like a hand-held mouse.

• Residents who have never spoken are using the head mouse and other devices — mouth-sensitive pointing sticks, breath-activated tubes — to allow voice simulators to speak for them. They're making telephone calls and communicating with staff members, residents and family members.

• Non-speaking residents also are using head mice and other adapted devices to e-mail friends, write letters, compose and play music, compile a Beechwood cookbook and explore different software programs and activities on specially adapted computers.

“That's the power of technology and that's what makes it so fun to have it here,” says Kay Barker, Beechwood's occupational therapist. “We have people who may not have the muscle power, but they still have the ability to get on the Internet, write their own articles, track their own banking.

“I see my role as looking at the skills and abilities of each individual and then matching them with the available technology,” she says. “It's really, really exciting when you can give capability back.”

The boom in the personal computer and electronics markets is helping. Until a few years ago, most of the equipment to help disabled people speak, move or operate devices was expensive and limited because it was confined to small, niche markets.

At about $17,000, Mr. Haverkos' Tongue Touch system remains a high-end item, but long-term care providers hope such technology can reduce the amount of hands-on care and assistance that people with severe disabilities require.

Spirits rise
But mass-market forces are at work, too, as the combination of voice-activated devices and software, infrared/radio wave technology and personal computers allow others with disabilities to use everyday products that have been tailored to their specific abilities and needs.

Beechwood's efforts are coordinated by Ms. Barker, speech pathologist Sandy Grether and therapy director Diane Lee. One of their goals is to develop and implement a system that would allow the home's wheelchair users to call and use the elevators without having to push the button manually or wait for someone to push it for them.

Beechwood staff has noticed how Mr. Haverkos' spirits have lifted since he began using Tongue Touch, which was paid for by the Veterans Administration, Ms. Barker says. Except for personal care and dressing help, he remains fairly independent throughout the day.

“He'd never used a computer before. Now he's learning word processing, he communicates with his son in Chicago, he logs on the Internet, he has e-mail,” she says. “It's tied him to the world and given life back. He no longer has to sit and wait for someone to change the channel on his TV.”

Unofficial troubleshooter
“I've been much happier since I got this than I was before,” says Mr. Haverkos, whose engineering background has made him an unofficial techno-troubleshooter at Beechwood.

“I think that's part of the reason that I've got all this junk,” he says, grinning. “I know how it works. It keeps me thinking about what's going on.”

“What we really want to do is give the residents reasons to be out of their rooms and involved in life,” she says. “That's what it's all about, right?”



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