Digital Extra

By BRIAN DICKINSON

WHEN WE ARE in good health, communicating with other humans seems like no big deal. We learn to speak by the age of two or three. We rapidly learn new words and what they mean. We aren't so adept at listening, but most of us get by all right with simple conversation.

Speaking is so basic to our lives that few of us give the process much thought. And we've long since grown accustomed to inventions that magnify the reach of the voice: the telephone, radio, television, communication satellites and, now, global hookups of millions of computers.

Yet for millions, communication is anything but routine. The deaf and the blind must learn different means of exchanging words and ideas. Millions more, afflicted by strokes and disorders of the nervous system, encounter other obstacles to communication. I write as an interested party. For more than three years, I have been coping with a progressive nerve disease, amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). It has paralyzed my limbs, stolen my voice and generally complicated my attempts at communication.

This experience has brought more than a few frustrations. It suggests to me that impaired communication may present a far more serious problem - for many more ill people, their families and their physicians and nurses - than is generally realized. When a patient can neither speak nor write, communication is severely compromised, often being reduced to nodding simple yes or no replies to a doctor's questions. This expedient works only up to a point. Beyond asking: "Does it hurt when you cough?" a physician is limited in his or her inquiry. This barrier can do even more harm by eroding a patient's spirit.

Communication has been central to human survival and progress. Without it, we feel isolated and remote. This can destroy an ill person's stamina, and undercut the will to stay in the fight. Conversely, I think that restoring a patient's "voice" can be a great help in shoring up a flagging will. Even against an incurable malady like ALS, giving a patient the means to communicate can add immeasurably to the patient's quality of life.

The medical world knows all this, and has made remarkable strides in helping to knock down barriers to communication. I've been fortunate to have use of several ingenious computer programs that let me continue to write for my newspaper. This technology has given me a tremendous lift.

Today I write mainly, though, for others who are ill and must deal with the loss of speech and other obstacles to simply being heard. Among these, I suspect, are many of the 30,000 ALS patients in the United States, plus a great many more victims of other neurological disorders and strokes.

Some already have access to specially rigged computers; some are so seriously ill that no gadgetry is likely to help. But for my many fellow patients who yearn to communicate but cannot, computer technology can do wonders to give back to the voiceless some version of a voice.

Restoring some semblance of a lost voice can be among the most precious gifts. It can rebuild contacts between an ill person, his family, friends and doctors. These computer programs help return a patient at least part way to full participation in the greater world. Made passive and almost helpless by disease, many such people need be passive no more. With these devices, many patients can, in effect, rejoin their families, write letters, chat (after a fashion) with friends and otherwise feel again like members of the human community.

No computer that I know of can cure any bodily ill. But I know that speech-aid programs can lift a patient's spirit and greatly add to the quality of a life. An ill person who enjoys two-way contact with other people will usually feel stronger, more resilient, readier to cope than one who is isolated by an enforced silence.

In my case, these inventions have done wonders in helping me to fight a terrible disease. They have helped immensely to make the past three years something much richer than a time of dread, gloom and frustrated silence. These assists are available. It's my hope that more people silenced by disease would learn about these devices.

Since getting socked with ALS, I have used three computerized aids, each using a unique technology, to help me keep writing and otherwise keep in touch with the outside world. In brief:

* Voice-recognition system. I used this after my hands could no longer operate a keyboard. After the user trains the computer to recognize his or her voice, each word user speaks into a microphone appears on computer screen. Contact Dragon Systems Inc., 320 Nevada St., Newton MA 02160.

* "Sharekey" system. When my speaking voice went bad, the voice- recognition system no longer worked. I turned to a device that let me run a special word-processing program with a slight wiggle of the single finger that I could still move. The user clicks a switch to move a cursor across grids of words and editing commands. The voice synthesizer lets the user "speak" what he writes. Contact SHARE Foundation Inc., University of Massachusetts- Dartmouth, North Dartmouth MA 02747.

* "Eyegaze" system. I turned to this after even my fingers decided to go on strike. A small camera linked to a computer tracks the user's eye movements across an alphabet on a screen. When the eye gazes on a letter for half a second, the computer displays that letter on the screen. The system can be linked to on-line services etc. Cost: at least $20,000 per unit. Contact LC Technologies Inc. 9455 Silver King Court, Fairfax VA 22031.

Brian Dickinson is the Journal-Bulletin's editorial columnist.