"The most basic of all human needs is the need to understand and be understood.
The best way to understand people is to listen to them."

~Ralph Nichols

The loss of Jeff's speech was perhaps the hardest of all of the losses we encountered with this disease. In the majority of cases, the mind stays sharp, so to loose the ability to speak only isolates the individual even further and takes away even more independence. The need becomes finding other forms of communication- to use an augmentative or alternative form of communication (AAC).

Unintelligible speech or limited speech can be enhanced with AAC (augmentative or alternative communication). We are going to talk briefly about a YES/NO system, light technology and high technology. There are websites that can give you more information. You need to obtain a prescription from your doctor to see a speech/language pathologist to receive a full evaluation. A good speech therapist that is experienced in alternative and augmentative communication and computer technology can set up the communication system that will best suit you and your families needs, both for speech and written communication. It is important to remember that your needs will continue to change, so a combination of systems may be used. Ultimately, before investing a lot of money in a system, do some homework and seek the advice and help of a speech pathologist who is up-to-date with the technology for augmentative and alternative communication and is familiar with the changing nature of ALS.

Light Technology

Communication Boards - are boards (poster board, wood, Plexiglas) that have symbols(pictures or words) arranged so that one can point or eye gaze to communicate wants, needs or desires. Plexiglas is recommended as the caregiver can see where the individual is eye gazing if there is no ability to point.

Suggestions to Making Communication Boards Easy to Use or Logical:

• Subjects, such as I, you and people's names generally go on the left-hand side of the board. Comments can be placed on this side, also.
• Verbs follow in the next set of columns.
• Objects and vocabulary that would follow a verb in formulating a sentence follows in the next set of columns.

With this arrangement of symbols, the user is able to form sentences quickly because he/she is able to predict where different parts of speech or types of vocabulary are located. It also moves from left to right, as does the structure of the English language.

See the website: www.mayer-johnson.com for information and computer programs on making communication boards: "Boardmaker and the Picture Communication Symbols"

High Technology
These systems allow for the storage and retrieval of message information. They usually have voice output, which is the main difference between light tech and high tech.

There are two types:
Dedicated - These systems are for the primary purpose of being an AAC system. Software and hardware are designed with features essential for communication. These tend to be more durable and have a longer life. Providers tend to fund dedicated devices more readily. Dynavox and Lightwriter by Zygo are two examples.

Non-Dedicated - These devices are not specifically designed for communication, but with adaptations can be used as an AAC system, with voice output. Example: Laptop computers adapted with Words-Plus and EZKeys software.

The two most widely used voice output types are: digitized or synthesized. Recorded human speech is digitized voice output. It is sounds more "normal", but it is limiting because it can only say the words or phrases pre-programmed on the device. It does not allow for spontaneous conversation. Computer-generated speech is synthesized voice output. It does not sound as "normal" as a digitized voice, but it does allow the user to have pre-programmed words and phrases as well as the ability to have spontaneous conversation and thoughts. Banking your voice for later use is now a reality. Many personal computers can make a recording of ones voice, which then can be stored on a digital file. Later, the individual can upload the file and play it back on an ACC device, such as on one by Words-Plus, DynaVox, and/or Zygo. What a gift to ones family to hear your voice saying, "I love you".

Considering Access - How does one operate the high tech device?

Direct selection - is where one can use a finger, hand, toe, head stick, eye gaze, light pointer, or optical sensor to point to or indicate the choice. Dynavox is an example of direct selection system.

Scanning system - is a systematic presentation of choices is a linear scanning array of symbol choices. Once the desired symbol is reached, one touches a switch to stop the scanning and it selects the symbol. A switch can be placed anywhere one has even minimal movement. EZKeys by Words-Plus is an example of a scanning system.

A word of caution- in our research considering retinal/optical sensor/ or infrared switches, which are very expensive, but promising- we found that with ALS, they may not be worth the expense in the end. This is because as the facial muscles atrophy, the corneas begin to dry out. As the cornea dry out, it does not refract light off the back of the eye as well, thus possibly diminishing the effectiveness of this infrared system for ALS users. Before you invest in this expensive switch system, please do your own research.

Helpful Resources

Dynavox- www.dynavoxtech.com
EZ Keys/ Words Plus- www.words-plus.com
Prentke Romich Company- www.prentrom.com
Dunamis, Inc (good source for switches) www.dunamisinc.com
Alabama State Rehab: www.rehab.alabama.gov/star