2003 Conference Proceedings

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TECHNOLOGY FOR PEOPLE WITH LITTLE MOVEMENT, NO MOVEMENT, OR NO CONTROLLABLE MOVEMENT

Presenter
Carl Brahe
Technos America Ltd LLC
386 Quartz Circle
Bailey, CO 80421
303-816-9006
Email: carl@mctos.com

In 1993 and my friend John was diagnosed with ALS. During the process of his disease he experienced many loses. As the disease progressed he lost the ability to walk, then he lost speech then the ability to even breath on his own. Soon he lost all movement. In 1994 John was completely locked-in.

With each loss his fear grew. His greatest fear was to be totally locked down, totally dependent, totally unable to express himself even to make his basic needs known, a brain in a box. So before John lost the ability to communicate in any way we began searching all over the world for some technology that would allow him to just say, "yes".

When John first lost the ability to communicate the experts in the field at that time said there was nothing that could be done. But we couldn't accept this. Within a week we had an EMG biofeedback device built that we attached to his neck with electrodes. Even though he could not move his neck, or make any perceptible movement, there was enough electrical impulse in the muscle to be read by the EMG. For a year and a half after he had no movement he communicated by moving the needle on the biofeedback device to spell out words and answer questions.

In our search for technology there were many disappointments. Of course we were desperate and tried anything and everything we could obtain. Some of the things we tried turned out to be silly. Other things we found were so expensive of that they were totally out of reach. But each time we found a new possibility, John's health would improve. And each failure was followed by an immediate a drop in John's health. This showed us that communication is a basic necessity for quality of life.

Only a few years ago there were very few or no solutions that allowed objective communication with people in the time that they needed at most, as they were dying, or for those with developmental disabilities, as they were growing and developing. In the recent past these people were never given opportunities to use communication devices, and other assistive technology, because they were unable to move or to control movement. Now technology is available to allow almost anyone who has an understanding of cause and effect to operate a full spectrum of AT devices.

Last year a man in Japan wrote and published a book of poetry that was the dictated to family members and caregivers one symbol at a time using a MCTOS, Mind Controlled Tool Operating Switch. This man is totally locked-in and on a ventilator. He has absolutely no movement, can make no sound, and cannot even open his eyes.

An elementary student uses a mind-controlled switch to participate in school. She controls her Dynavox to answer discussion questions, give test questions for the other kids and joke with friends and teachers.

QualiWorld, is new technology this year that allows a person who can do no more than the open his eyes and move them, to control many aspects of the world using relatively inexpensive software and their existing computer systems. It's even possible to a control any PC program using only eye movements, or the slightest movement in any part of the body, using a standard USB Web Cam to move and control the cursor, as well as controlling with voice, external switches such as MCTOS and EMOS, joystick, mouse, keyboard, touch screen and other access methods.

With current technology our friend John could have led a more full life. A major challenge in providing John with assistive technology was that his body deteriorated so quickly that he lost the ability to operate it before he was able to learn to use it. Switches that would have allowed him to continue using communication devices are available now. MCTOS can be operated with muscle activity throughout the body as well as eye movement. These methods of operation are easy to master while the movement or bioelectrical activity is still measurable in muscles. When this ability is lost the person can switch to using mental activity. EMOS also works with eyes and muscle activity. This is newer technology that is self-calibrating and simple to operate.

During the time John could still move his eyes he could have adjusted his own hospital bed. The comfort and control factor in just this simple act can be profound for a person losing all control. He could have controlled most aspects of his environment using just his eyes or any other slight movement. He would have been able to compose his own messages rather that exhausting himself and caregivers using a letter board and slight blinks. He could have used the telephone to talk for him as well as fax, email and Internet. He would have been able to see into all areas of his home inside and out. He would have been able to answer the door, open the door, lock the door and adjust the drapes and windows. He could control heat, air-conditioning, and entertainment.

New technology is constantly being developed and adapted to assistive technology. More people every year will have available devices to help them live more meaningful and productive lives.

A hands on demonstration follows.


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