The words are right there. On the tip of her tongue.
But they can’t come out. And 85-year-old Princeton resident Araxy Foster knows they never will.
One of America’s 750,000 stroke victims, Foster comprehends fully every word spoken by her children, home aide, and the pastor at Nassau Presbyterian Church. But her verbal replies cannot be understood by any of them.
A few miles down the road from the Foster home, in Lingraphica’s new Carnegie Center suite, CEO Andrew Gomory sits adjusting a device that he believes might relieve Foster’s agonizing communication disability, and all its pent up frustration. Already the Lingraphica laptop and hand-held SmallTalk devices have helped thousands of stroke victims reconnect with the world around them.
Strokes, explains Gomory, result from either a blood clot or a bleeding vessel rupture, which cuts off the vital, oxygen-rich blood supply to the brain. They might follow a blow from without or a tumor within. Either way, this trauma can interrupt communication on the incoming side: the ability to understand either spoken or written messages. Or it might disable a person’s outgoing communications, leaving her unable to either form or find the necessary words. Each individual’s limitations vary, and might be any blend of these problems.
The disability can be temporary or permanent, yet 25 percent of those suffering a first stroke will have a recurrence within five years, increasing their odds of permanent damage. Right handers receiving a trauma to the left side face a greater communication-loss risk since their language centers are bunched mostly in the left temporal and parietal brain lobes. Left handers, having language centers more evenly spread, stand a better chance. But all stroke victims equally might be stricken with paralysis, body numbness, and ongoing pain.
In the back of Lingraphica’s new offices, technicians perch amid stacks of MacBook laptop computers. At their stations they transform these 15-inch laptops into dedicated, touch-screen communicators that will allow stroke victims to both retrain and express themselves with a finger tap.
Users pushing the Lingraphica’s sole button — the off/on switch — will find their screen presenting an array of familiar small icons. If Foster would like some bread or a paper towel, she can simply tap the “My Home” icon, which opens up a three-dimensional floor plan of a house. She can tap the bread box or the paper towel rack. It enlarges, showing her aide the item. With each of these icons comes the word.
Now, here’s the sweet part. Suppose Foster was in the habit of taking tea from her grandmother’s antique teapot. Either she or her aide could take a digital photo of that pot, transfer it via the USB port onto the touch screen, and drag it into the kitchen where it stays on the counter as a customized part of her Lingraphica house, ever ready to be identified. As backup for each picture, the phrase appears as written, and the audio speaker announces “Grandmother’s Teapot.”
Soon the whole house, family album, restaurant menu list, even generalized responses like “I have a pacemaker” can be customized into your personal machine. They can also be made easily into phrases such as “I’d like some tea,” or “Tell the doctor I am tired of waiting.”
“Our users are facing two fears here,” says Gomory. “Fear of speaking and often fear of technology.”
Most stroke sufferers were not brought up on computers. Thus, rather than make downloadable software, Lingraphica has designed a one-button, minimal-step, machine.
No distracting clicks or protocols lead to E-mail, web browsing, or Garage Band composing. But if you have enough finger movement and basic mental comprehension following your injury, you can rejoin the realm of communication. You can also therapeutically employ Lingraphica to find your way back to speech.
“Probably the greatest discovery that made all today’s stroke rehabilitation possible was the slowly accepted belief that the brain was plastic,” says Gomory. By the early 1970s scientists had the human brain pretty well mapped out.
This part handled speech, that part governed visual awareness. Destroy any part and the body loses that specific function. They knew this for sure.
Problem was, the scientists were wrong. Humankind’s brain kept proving itself able to outleap the most ironclad of neuro-classifications.
By the 1990s the data overcame historical skepticism. Experimentation showed that individual body functions were found throughout the gray matter, and that an injured section of the brain could have its duties picked up by another part. This indicated that those afflicted by stroke could, with admittedly Herculean efforts, hope for some degree of recovery.
Two repairable disabilities can result from a stroke. Aphasia, or what some folks call “Swiss cheese memory,” is the inability to find or remember the appropriate words in your mind. This serious, blanket lack of verbal recall can cut victims off from their social world, even though their comprehension is totally untouched.
Beginning at about age 40, most individuals experience touches of this in the form of anomia — the occasional inability to recall proper nouns. As people get a bit longer in the tooth, friends begin to increasingly talk of “senior moments.”
At some point, older individuals might experience a TIA — transient ischemic attack. This mini-stroke, caused by a brief clotting, can temporarily bring on stroke-like symptoms, but it entails no permanent brain damage. Care should be taken, however, since more than a third of TIA suffers will suffer a major stroke later.
In apraxia, the second type of stroke communicative disability, the sufferer can know the words in his mind, but he has lost the motor skills to get them out. “Such a victim could blow a candle out, but not make the sound ‘oooh’ that demands the exact same breathing mechanism,” explains Gomory. Or, the individual might be able to speak syllables that only come out as incoherent phrases.
For those with aphasia, the good news is that the mind is more easily retrained than the body. Those with apraxia’s physical limitations face a longer, harder retraining. “Every case of stroke is individual,” says Gomory. “Therefore we had to customize Lingraphica’s therapeutic aspects as thoroughly as the communicative ones.”
Users seeking to retrain speech patterns are offered a selection of terms they can build into their own workshop. Tap an icon and the written words, the audio sound, and an enlarged picture of a speaker’s mouth saying the phrase all come on in unison. Nouns can be displayed with sharp color images. Verbs have animation (the runner really runs). Unlike most foreign language tapes, the user can set his own speed for each session. Each image could be repeated as often as required with a single finger tap.
Gomory estimates that his units can help 40 percent of the 100,000 stroke victims experiencing permanent aphasia or apraxia.
As valuable a service as the 15-inch Lingraphica screen provides, it boasts only a laptop’s convenience. It’s scarcely the tool for ordering the veal parmigiana in your favorite restaurant or practicing verbs as you stroll the towpath. For more mobile aphasia recoverers, Lingraphica has recently developed its SmallTalk hand-held device.
Virtually everything can be downloaded from Lingraphica onto the company’s own unit, or programed into an iPhone or iPod Touch. Using finger scrolling, users can tap an icon and tell listeners that they have had a stroke, that the food is too expensive, or that the doctor is examining the wrong leg. Apraxia and aphasia victims can also practice by tapping the appropriate icon, listening to the phrase, watching the animated lips speak it, then repeating it as often as is convenient.
Lingraphica’s base $7,000 price tag and the additional $350 for SmallTalk buys an amazing amount of liberation, and does not seem to scare buyers away. Of the several thousands of clients, most praise the simplicity and the vast customizing capability.
They also approve of its not being mixed in with the Internet, unlike other stroke-rehab software packages. “It’s interesting to note those buyers who are not covered by insurance and must plunk down the full amount out of pocket,” say Gomory. “In most cases, the parents don’t hesitate to write the check for their children, but children very rarely make that sacrifice for their aging parents.”
Gomory took over the helm of Lingraphica at what he calls a particularly propitious moment. Lingraphica launched in 1990 under the leadership of Richard Steele, who then served as research health scientist at the Research and Development Center of Palo Alto VA Medical Center. He was the right man with the right blend of training, with a bachelor’s in physics from Stanford and a master’s and Ph.D. in Slavic languages and linguistics from Harvard. Operating on a previously developed Visual Communication System (VIC), Steele put his icon-based speech retraining program on computers. By 1995 Lingraphica opened its first Language Care Center.
Then in 2002 Medicare approved Lingraphica purchases, solely as a speech-generating aid for stroke victims. Its therapeutic value is still technically denied, but the users benefiting from its therapy seem to mind very little.
“I came on shortly afterward,” Gomory recalls, “After getting Medicare’s O.K., it was as if a whole cloud had been lifted and orders began flooding in.” Physicians began prescribing the units and the learning centers expanded nationwide. Like Steele, Gomory was suited for his leadership role.
A native of Corton-on-Hudson, New York, Gomory attended Princeton University, graduating in 1979 with a bachelor’s in English literature. Breaking from academe, Gomory formed a rock band playing in Manhattan and around the Garden State. Settling in the old Thompson farm-turned-artists-haven in Belle Mead, he then formed the RD3 Record Label and began recording. The digital aspects fascinated him, and by the late 1980s Gomory found himself back in formal studies — this time taking a computer science master’s at Rutgers.
Gomory then worked for a series of what he terms “whiz-bang computer companies,” including ALK Technologies on Herrontown Road. All through these techie meanderings, Gomory kept his love of language and the spoken word. Lingraphica seemed an ideal fit.
In October Lingraphica moved from 15 Spring Street to larger Carnegie Center offices. And things are looking prosperous. The company is still privately held among the Steele family and several original investors. No funding is sought, nor investment shares offered. Sales of the Lingraphica units and the SmallTalk accessory are booming well into the thousands.
At the front table in the foyer, Gomory now chats with several of his clients. They form the volunteer Lingraphica Users Group, the members of which ardently debate and help the professional staff tweak improvements into the system. “It happened about two years ago,” says Gomory. “A couple of recent customers came in and said, ‘You need a users’ group.’ Today they are our best market research team and we’re better for it.”
Very soon Araxy Foster will be making her introduction to the Lingraphica computer. If her doctor prescribes it and if she likes what she sees, she can invite a company agent who will test her basic capability. If everything is satisfactory he will later begin guiding her through the training.
If she is like the thousands who have gone before, Foster might just reconnect with her world, and regain her independence. She will be able to inform her aide that she wants tea at 2 p.m., and she can tell her pastor exactly what she thought of his sermon.
Lingraphica, 103 Carnegie Center, Suite 204, Princeton 08540; 609-683-7272; fax, 609-683-7104. Andrew Gomory, CEO. Home page: www.aphasia.com.