People with ALS quickly become familiar with a wide world of durable medical equipment that can range from walkers and wheelchairs to ventilation equipment.
Within this equipment array are devices for augmentative, alternative communication (AAC): equipment that can enable people to communicate if they’re unable to speak.
|Jackie Boswell, a professor emeritus of music at Arizona State University, in Tempe, who has ALS, uses the Handheld Portable Impact by Enkidu to communicate. Photo courtesy of Enkidu Research
Those knowledgeable about the disease agree that AAC devices can help keep a person with ALS connected with their loved ones and able to maintain a higher quality of life.
To help you decide which devices might best suit your needs, The MDA/ALS Newsmagazine presents this primer on today’s AAC choices.
Don’t go it alone
The AAC concept includes any means of communication beyond speaking, and AAC equipment is available in a wide range of products, employing an even wider range of technology.
Low-tech AAC can be as simple as gesturing or pointing to an alphabet board. For those with ALS, high-tech devices are usually in order, said Jeff Edmiaston, a speech-language pathologist at Barnes Jewish Hospital in St. Louis.
Today’s AAC devices include dedicated machines designed solely for generating speech, and software programs for personal computers. The devices are created to be user-friendly (easy to learn and use), and their technology is increasingly innovative.
Health experts and device manufacturers encourage consumers — especially those with ALS — to consult with a team of experts before they buy an AAC device.
For example, where Edmiaston works, a person with ALS will team up with a speech-language pathologist, an occupational therapist and a physical therapist. Together they’ll try out many devices, decide what AAC equipment is most appropriate for the individual, and determine how he or she can continue to use it as the disease progresses.
A qualified AAC team should also be able to help get you successfully through the Medicare and/or private insurance reimbursement process, Edmiaston said.
A patient should “ask if the person who does the evaluation understands the Medicare guidelines, and knows what goes in a report,” he said.
It’s a time-consuming process that can take up to three months to complete, he said.
Consumers may experience an unpleasant “sticker shock” when they begin researching AAC devices. The high-tech machines can cost thousands of dollars.
But hang in there, Edmiaston advised, and make your communication needs your priority, because “there’s always a way” to find funding.
“The thing I always say is ‘we’ll talk about cost at the very end.’ Cost should never be an issue,” Edmiaston said. “If you go for what’s the cheapest, then what happens is you will have to get a new device down the road [as your needs change].”
Patients and therapists should be asking, “Will this device meet my needs now, and will it meet my needs six months from now?”
Edmiaston added that people with ALS should begin looking at AAC choices when they first begin experiencing symptoms.
What they can do
|The Miracle Mouse from Maui Innovative Peripherals uses head motion to run a computer.
While there’s a growing number of AAC devices on the market, each follows the same basic idea: The user inputs information about what to say, and the machine “speaks” it.
The devices differ in the actual design of the machine, size and system features. Most are generally the size of a laptop computer or smaller, with handheld or palmtop devices a recent innovation.
Some brands feature standard keyboards or rows of buttons for inputting information,
while other “tablet” styles have touch screens, in which the user simply touches the screen to activate a function. Mice and trackballs are also input devices.
Most AAC systems use some form of encoding, a process of creating codes, abbreviations or labels to represent a letter, item or message.
For example, typing “HH” might stand for “Hello, how are you?” on one machine. Another machine might be programmed so that touching one button will generate the same greeting, Edmiaston said.
Devices also differ in whether they’re symbol-based, in which the user selects from categories of symbols and pictures to form a sentence, or text-based, in which the user inputs text, codes or abbreviations that are converted into speech. In text-to-speech machines, you can type a sentence and the computer “speaks it.”
Most popular brands include some level of word prediction, a keystroke-saving feature. Based on one or two letters, the system tries to guess the rest of the word the user is typing, and offers a list of letters that would go with letters already entered.
More sophisticated word prediction features can be programmed to learn words the user enters most frequently. In fact, the latest technology can guess the user’s next word with remarkable accuracy, Edmiaston said.
New technology in AAC has also led to machines that can dial a phone and speak for you, and environmental control — the ability to control household devices such as television sets and other electronics.
Scanning and switches
As a user’s physical ability changes, so must the input method for using the machine. That’s where switches come in.
Say a person with ALS can no longer type on a keyboard or click a mouse. The person might still be able to use a switch to perform the same functions. Examples of switch use would be tapping a button or moving a joystick to activate a function.
Switches, too, feature a wide range of technology, from simple plug-in buttons to eyegaze systems that track eye movement to activate a selection.
Head mice are another type of switch. Most involve the user wearing a shiny dot sticker on the forehead and a special camera that tracks the dot and controls the computer according to the user’s head movement.
With switches may come scanning — a method of selecting items in a communication system. Scanning programs highlight rows or sections of choices on a screen in sequence, and the user activates the switch when the correct choice is highlighted.
For example, if you needed to type an “h,” the device would present an onscreen letter board and highlight the rows of letters in sequence. When the row with “h” is highlighted, you’d select it with your input device (a mouse click, switch, etc.). Then each letter in the row would be highlighted in sequence, and when it came to “h,” you’d select it.
Most AAC devices and personal computers on the market can be adapted with a progression of switches, and most offer scanning ability.
The future is here
Computer software — programs that can turn a personal computer into a speech generator — is another AAC option.
Most work with Windows operating systems, although some are Macintosh-compatible. Most people install the programs on laptop computers for added portability.
Futuristic switches and features such as input devices activated by brain waves aren’t dreams for the future — they’re available today.
It’s also possible to continue communicating in your own voice through an AAC device, an approach that takes foresight and planning, Edmiaston said.
People who are experiencing progressive loss of speaking ability can “bank” digital recordings of their voices while they can still speak, and the recordings can then be downloaded on to AAC devices. Anyone interested in this possibility should ask a speech-language pathologist for more information, he said.
Information sources for this article: CINI.org; Wright State University Rehabilitation Engineering Web site; Communication Aid Manufacturers Association.