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This
Webpage is an Archive of the ALS March of Faces Brick by Brick October
Newsletters of 1998 & 1999 featuring Augmentative and Alternative
Communication Information I have met PALS from all over and at different levels of speech progression. I know PALS on vents who can still talk, I know PALS who have not uttered a sound for ages and can still breathe on their own. One thing I have found is that all of them have found living with ALS bearable because they remain communicating participants in our world. Because communication is such a profound element in the life of PALS, Kyle and I have spent the last few months researching and examining different types of augmentative communication devices, tools and equipment. Augmentative and Alternative Communication is the official term for non-speech communication. The difference between augmentative and alternative communication is simply between partial and total dependency on non-speech communication. You can put these devices into two basic categories: Low-tech and Hi-tech. As the terms would infer, low-tech devices and means are considerably less expensive and often times free or do-it-yourself systems. Hi-tech generally involves some type of electronic equipment from simple microphone/amplifier systems to hi-end computer technology. Hi-tech does not mean it is better. Each device is best according to what suits your needs at any given time. If communication is becoming a problem, then the time to speak to a speech pathologist is as early as possible to make sure you start off on the right path. Just about every hospital has some sort of Speech Rehabilitation laboratory, so you need not travel far to have your evaluation done. One of the advantages of low-tech communication other than the price, is it can withstand the test of time, and survive most communication depreciations. LOW-TECH COMMUNICATIONS
Letter Boards and hand signals are very useful if movement in the hands and arms is still apparent. Often with bulbar-onset ALS, one may maintain the ability to point or gesture long after their speech ability and grip have disappeared. Both are easily designed by yourself. A letter board or Alphabet Board is a grid of letters and symbols that one points to in order to communicate. An icon board can be made to symbolize phrases or frequently used words. The EyeLink is a great tool. A clear letterboard used to spell out words and sentences. It is offered by CINI, Communication Independence for the Neurologically impaired. Order yours at www.cini.org
Hand signals could be regular Sign Language or gestures developed between the communicating parties to represent words or phrases. A simple essential Sign
Language handbook was developed for PALS and is available by emailing
Rickvdh@aol.com
or write Richard van den Heuvel, 6 Winnipeg Lane, Lawrenceville, NJ
08648. HI TECH COMMUNICATIONS
There is a vast array of hi-tech solutions in the communications field. Most of you are undoubtedly familiar with the personal computer, and many of its advancements have enabled PALS to continue communicating despite their speech disabilities. Other than the computer itself, some of these devices require additional hardware along with software programs that allow you to interface with regular programs on your computer. The technology of the computer industry is growing at such a fast and competitive rate, that the cost of a PC is no longer prohibitive to most. Fantastic setups by brand names such as IBM, Compaq, Micron and many more can be found starting as low as $749. Once equipped with the computer other elements may be added as you go along, such as software programs like on-screen keyboards. Some programs are free and others can cost over $500. Enhancements such as word/phrase prediction, a program that gives you a list of your frequently used words or phrases that appear as you type, so there is no need to type out full words or phrases, add to the expense of this type of software. There are several on-screen keyboards available free to download on the ALS March of Faces adaptech web page, along with other free downloadable adaptive software. Other programs with advanced enhancements are SoftType® by Origin Instruments, WiVik® by Prentke Romich Company, EZ Keys® by Words+, Inc. Gus! By Gus Communications, Inc. Other enhancements include Voice
Synthesizers and Text-to-Speech. These are means of having verbal
communication through your computer. March of Faces PALS, Marshall
Pines, developed a software program that provides text to speech
ability that is free for PALS to download, called E-triloquist . This program will
convert type written text into speech. Many of the on-screen keyboard
programs mentioned above also provide this Text-to-speech ability. Another type of point and talk program is currently designed for a MacIntosh, called Speaking Dynamically by Mayer-Johnson Co., but they expect to come out with a PC version near the end of 1999. Hardware and software can provide means
of movement for clicking and moving the cursor around. Speech
recognition software allows you, voice activated commands and
dictation. March of Faces PALS, Mary Yoder of Sugarcreek, OH, who swung her foot into the infrared beam to click. There are a myriad of soft-touch switches that can utilize all different movements of muscle, Sip/Puff, tongue switch, eyebrow switches. All replace the mouse click for the computer. We also got the opportunity last week to tryout something very new on the technological frontier. Thanks to March of Faces PALS, Robert DeLeary of Clarkston, MI we looked at a hardware/software program called Cyberlink / BrainFingers . The Cyberlink Interface is mind actuated control, using brainwaves to dictate the movement of the cursor and switching.
Last October we did an extensive article on augmentative and alternative communications. We'd like to give you a brief overview Each device/system is best according to what suits your needs at any given time. If communication is becoming a problem, then the time to speak to a speech pathologist is as early as possible to make sure you start off on the right path. Just about every hospital has some sort of Speech Rehabilitation laboratory, so you need not travel far to have your evaluation done. One of the most important things is to make sure the speech pathologist you are working with understands the progressive nature of ALS, and the need to plan for additional or upgraded equipment. Re-training your speech is simply not enough. You will both be disappointed in the long run if you are not prepared. His father, Gary Becker designed a simple alphabet system to use eye movement to indicate letters, that we found quite easy to adopt and simple to memorize. Each letter takes a maximum of two eye movements to reach, and because of this unique layout, often only one eye movement is required. Full eye movement in 8 directions is required to use this successful, with at least one alternate way to communicate yes or no. Gary has designed an attractive long lasting board on plexiglass. The cost of the plexiglass Becker System is $25 plus $3.20 s/h. For more information or to order write to Becker System, P.O. Box 70513, Pt. Richmond, CA 94807 or email 
HI TECH COMMUNICATIONS Mouse Emulators Text-to-Speech Voice Synthesizers Switches/ Thought-controlled Switches Cursors WHAT'S NEW THIS YEAR IN HI-TECH? We've come across two new items this year to tell you about. We are very excited about a new software system that was introduced to us by our friend Dick Essey, President of the ALSA Bay Area Chapter. This is called REACH Interface Author by Applied Human Factors, Inc. There are several combinations to this program that make it not only different from other on-screen keyboard systems, but perhaps even more desirable. The REACH Interface Author comes with word prediction and text-to-speech synthesizing. You can set the voice to read aloud every key you type or read aloud after the end of the sentence, and many other sounds can be activated. The software also includes scanning keyboards, for switch only use and dwell cursors. In addition you can purchase "Smart Key" technology, that will drop out, gray out, allow active or inactive, keys that are most unlikely to be used next. For example, if youare typing the word RUN, the keys that would be left on the keyboard after you typed the letter "R" would be "A", "E", "I","O", "U", "Y" and "H".
Another far more costly item is also on the market here in the U.S. MCTOS is a thought-controlled switch system not unlike Brainfingers/Cyberlink mentioned in last year's issue. The system consists of a head-band switch, an interface controller and software to interpret. According to owner/promoter Carl Brahe, the system operates by the interpretation of alpha and beta brainwaves, the same used in EEG's and biofeedback. Supposedly, it can operate as a switch for external controls, such as lights, remotes etc. or as a switch for a computer or even as a simple yes/no communication system. We have viewed the video and read the operating manual for this system but we have not actually seen or tried the hardware. It is difficult to determine if one's eye or brow movement is controlling the switch or if it is one's thoughts. Our experience with Brainfingers last year and the looks of this system, fair warning must be made, that if indeed these brainwave-style systems work, it takes a good deal of calibrating and training for both the operator and the caregiver to become accustom. Neither system is inexpensive. MCTOS price tag is $2495 with a 30 day money back guarantee. MCTOS also offers a user group on it's website, for users to exchange information, ideas and gain technical support. You will most likely be finding more of this technology popping up on the market, since small portable brainwave machines, or EEG's have been made cost-effective. 1 and 2 channel units have become available for under $1000 during the 90's. The use of the EEG to control or communicate with a computer is an application that has undergone slow but steady development since the 1960's. Early work by Pinneo and others attempted to record "latent motor potentials" caused by a person thinking a work, such as "up" or "down." More recently, investigators have been looking for signals that appear controllable, and adapting the system to them. One of these is the "sensorimotor rhythm" (SMR), that has been found to be under a certain amount of conscious control. Generally, the user uses "affective" thoughts, such as "feeling light" or "stopping thinking" to cause the desired rhythm. (source Applications of Small Brainwave Machines, Thomas F. Collura, Ph.D., P.E. , October 17, 1996) Then there are companies such as IBVA Tek, who have been using brainwaves for game control, artistic interpretation and other applications for nearly 30 years. And as the people from IBVA put it, "We feel it will go much farther than that and the keyboard and mouse will not be the standard inputs for computers a few years down the line." |
Letter Boards
