Communication tips

ALS and speech

Weakening of the muscle groups that are used for speech can cause communication problems for ALS patients. This is called "dysarthria" and is often linked to eating and swallowing difficulties. Some muscles employed in the act of swallowing also function to generate speech sounds. Since speech formation is complex and concerns a number of muscle groups, ALS can cause different types of speech difficulties, depending on the affected muscle groups. Weak vocal cords can make a voice hoarse or cause breath sounds. Impairment of the weak palate can cause air hoarse or breath sounds, degradation of the soft palate can lead to a nasal voice. Impairment of lips and tongue can hamper good articulation and the release of certain sounds. Speech may then become slurred and unclear. A speech therapist can help with training techniques to make up for weak speech muscles. However, if these compensation techniques fail to help, the speech therapist can provide information on various means of communication that are available.

The impact of speech impairment
Since ALS is a progressive disease, speech can deteriorate to the point where talking is no longer possible and communication depends on means of communication. It is an important responsibility of all caregivers and family members that every communication method is taught that the patient chooses to use. Willing cooperation of friends and family can help alleviate or eliminate any feeling of isolation.

Communication can be encouraged by simple methods.
- Each message should be given with as few words as possible, so as to spare the voice as much as possible.
- Non-verbal communication such as nodding, shrugging or hand movements can also speak volumes.
- When a patient is speaking it is best to turn the radio or television volume down on or even off. Family and friends often become good lip readers if they are able to observe a patient’s face well. While eating a patient should be a listener rather than speaker, to avoid choking.
- A precise and slow pronunciation of short sentences with possible repetition of certain words may compensate for weakness of lips and tongue somewhat.
- When speaking or writing is no longer an option, you can proceed to certain codes for "yes or no". Head movements, finger tapping and eye expressions are applied successfully. The questions should then be formulated in such a way that they can be answered with "yes" or "no".
- A suction device may make the voice less "gurgling" in case of excessive mucus and saliva.
- To give the listener more information and to improve communication, the use of an alphabet card can be a good idea, always indicating the first letters of the words to be pronounced.

Using the telephone
ALS can make telephone calls difficult, but there are ways to deal with many telephone problems.
There are hands-free keys phones, as well as deaf telephones. The latter is a phone with a small computer screen and a letter keyboard, which enables written communication (Alto by Belgacom). The downside is that the respondent needs to have the same device available. Similar features are provided by a fax or computer equipped with a modem.
A voice amplifier can be connected to a phone to boost the volume of a weak voice;
Emergency calls are possible with systems that automatically dial different emergency numbers and transmit pre-recorded messages.
Pre-recorded messages can also be used for daily telephone use. For example, as soon as someone answers the phone, he can hear a recording that explains the patient’s speech problem and suggests a "code" for the remainder of the conversation. Thus a one-way conversation can proceed where the patient answers questions with "yes / no" by tapping the mouthpiece.
An answering machine can also be used for "selecting" incoming calls and only answering desirable ones.

Communication tools
Communication means range from very simple to highly complex. For some people, writing can replace speaking. A small clipboard, small slate or a "magical" slate can easily be taken along and are also inexpensive. If writing is rendered difficult by the loss of manual dexterity, a typewriter can offer a solution. The keys can be pressed manually or with a head stick when hand and arm function is inadequate for typing. An occupational therapist can determine which keyboard is needed. As an ordinary typewriter is not that easy to carry along, there are also portable ribbon writers such as the Canon Communicator. They are approximately the size of a pocket calculator and they print messages on narrow paper strips.
Communication or alphabet boards can be made at home and are the most common tool. "Speaker" and "listener" both see the board and each other. Each can indicate the letters to spell a message. Paper and pencil to write down the letters are useful. Communication Boards provide the advantage that both people are actively involved in a real two-way communication. And they are much cheaper than some more sophisticated tools.
Computer controlled devices can be used by almost anyone who is still able to move to some extent. These devices use a computer memory to store words, sentences or even entire messages. The sender can create a text by means of an indications table. This text can be "spoken" by a speech synthesizer or shown on a light board or paper web. These devices can be very effective but both sender and receiver must be motivated to learn to use them. There is a wide range of communication means available with an extensive variety of cost and complexity. For example: Light Writer and Buddy. However, Lucy, Mudikom and Tellus are systems which are more developed to confirm on the trolley. When selecting a device, it is important to seek the assistance of an occupational therapist and speech therapist. The occupational therapist usually determines the physical capabilities of a person with ALS to operate various devices. The occupational therapist and speech therapist cooperate to recommend the more complex devices and to train the ALS patient so he can use them. These two experts assist the patient with the choice of a device, adapted to individual problems and abilities.