Managing Speech Changes

Your ability to communicate at all times is vital and must be maintained even when speech alone is not sufficient. Augmentative Alternative Communication (AAC) tools and strategies are available to help. Three primary AAC tools are:

Speech Generating Devices or Text-To-Speech Apps

Low-Tech or Rapid Access Communication Methods
Alternative Access Methods

A speech therapist specializing in AAC will help you review options, trial equipment, and tailor a customized and comprehensive solution for you. Please talk with your ALS clinic team, or ask your care manager for more information.

Prior to or at the First Sign of Speech Change

First, have a speech therapist measure your speech rate. This is an important baseline number that assists in determining timing for interventions.

Second, begin Message and Voice Banking so that your own voice can be used in a speech generating device (SGD) or text-to-speech (TTS) app if ever required.

Message Banking is a process of recording phrases and expressions that are meaningful to you and those you love. Recording words of affection, your own quintessential expressions, and phrases that you often repeat, like greetings, are especially important. Banked messages preserve your cadence and unique delivery of each expression. Examples of phrases I often recommend include, “How are you doing?”, “It’s great to see you.”, “I use this device to speak but my thinking and hearing are fine. Please speak directly to me.”, “Give me a break.”, “Thanks for everything!”, “Hold on! I want to add something.” Speech therapists can assist you with lists of popular messages, but the best phrase ideas often come from the people who know you best.
Voice Banking process creates a custom synthesized voice for you based on samples of your speech. There are different programs for Voice Banking that range in cost, time expenditure, and clarity of speech required.

Your speech therapist can make recommendations for Message and Voice Banking programs and apps. Scheduling an appointment or two with a speech therapist to provide assistance with Message and Voice banking can be a great way to get started.

When Changes in Speech Begin Causing Challenges in Communication

At the point when speech changes can be readily detected, it is vital that you meet with a speech therapist. The therapist will document your speech rate and listen to your speech characteristics. Together, you and your speech therapist will choose the best strategies to help you and those around you enjoy improved and less frustrating communication. Oral motor exercises are not recommended for speech changes resulting from ALS but there are many strategies that can help including the following:

Consider customizing your own list of helpful communication strategies to share with frequent communication partners. It can be distributed directly, via emails or through social media. Don’t forget to explain your energy conservation needs, including preferred communication times for calls and limits for visits.

A speech therapist will have other strategies to help with challenges like phone communication, emergency alerting systems for times when you are home alone, and tools for signaling to others within the home if you have a need.

At the point when speech is beginning to require repetitions or your speech rate slows significantly a speech therapist will often recommend an evaluation for Augmentative Alternative Communication (AAC). A proactive approach to AAC involves obtaining and customizing the components of a complete AAC system prior to a time when you may need to rely on it for communication.

Lip reading and other facial gestural cues

Fatigue impacts speech

Choosing your environment

Exaggerate your sounds

Establish context

Develop signals

Meals and socializing

Teach your communication partners how to help you

Teach frequent communication partners who occasionally don’t understand some of your words to repeat back any part of a sentence that they DID understand rather than saying, “What?”. They can substitute the word “blank” for the word they missed. Then you simply repeat back the word or words in question rather than saying the whole sentence, thus saving you energy and frustration.
If you have repeated a word two times and it is still not understood, consider spelling it aloud or using your finger to spell on your palm or on a table. Often just providing the first letter of the word in question is enough to help others.

Ask your doctor about assistive equipment

If your speech is clear but volume has decreased, ask your speech therapist about a light, wearable voice amplifier and hands-free microphone. These tools can significantly improve people’s ability to understand you, reduce the effort required to project your voice and conserve your energy so speech lasts throughout the day.
If excess saliva is interfering with your speech, consult with your doctor who may prescribe a portable suction machine, similar to what dentists use, and/or a drying medication or treatment.
If the primary factor distorting your speech is a nasal quality, your speech therapist may suggest a removable, palatal lift appliance or other options to reduce the excessive passage of sound through your nose.
If a communication partner has an uncorrected hearing loss, encourage them to seek services. A hearing aid may prove helpful.

Voice and message banking

Consider customizing your own list of helpful communication strategies to share with frequent communication partners. It can be distributed directly, via emails or through social media. Don’t forget to explain your energy conservation needs, including preferred communication times for calls and limits for visits.

A speech therapist will have other strategies to help with challenges like phone communication, emergency alerting systems for times when you are home alone, and tools for signaling to others within the home if you have a need.

At the point when speech is beginning to require repetitions or your speech rate slows significantly a speech therapist will often recommend an evaluation for Augmentative Alternative Communication (AAC). A proactive approach to AAC involves obtaining and customizing the components of a complete AAC system prior to a time when you may need to rely on it for communication.

When Speech Doesn’t Meet All Communication Needs

Speech Generating Devices (SGDs)

Speech Generating Devices (SGDs) and off-the-shelf tablets equipped with text-to-speech (TTS) apps provide a means to produce voiced speech. Voiced speech enables you to be part of a conversation, to get people’s attention, talk on the phone, speak with young children, and many other everyday needs. There are numerous factors that go into selecting an SGD or TTS app that best meets your current and future needs. Speech therapists can assist with insurance and funding choices and make sure you have the needed accessories (e.g. mounting and alternative access equipment) to make the system work optimally for you. A speech therapist can also assist you in installing banked messages or a personal, synthesized voice you created into the SGD or TTS app.

Eye-Gaze Devices

There are a variety of Eye-Gaze Devices that can improve the lives of people living with ALS. These devices use eye movement to “activate” a letter, word, or phrase on a computer screen, which can then be spoken by the computer for communication purposes. To use eye gaze devices, the person living with ALS needs to be able to use the muscles that control upper, lower, and lateral eye movement. These devices are typically used once other SGD devices are no longer useful. If your disease has progressed to the point of needing an eye-gaze device, Medicare and some insurance policies may cover a majority of the costs associated with purchasing an eye-gaze system, and of course, your care manager can always help.

Low-Tech/No Tech Communication

Low-Tech/No Tech Communication is sometimes called rapid access communication. It involves using a simple setup, or no equipment, to convey messages, and is an essential part of a complete communication system. Low-tech communication systems, like paper communication boards, are an essential backup to your high-tech speech generating device. Many people find a low-tech/no-tech AAC system to be preferable in some settings and situations. Writing is the most familiar low-tech communication method. If you cannot hold a pen or are limited to only movement of the eyes, there are other easy and portable low-tech solutions. The primary difference between high-tech and low-tech AAC systems is there is no voice produced by low-tech AAC. A partner is required to speak aloud the letters, words, or phrases you write or select from a board.

Alternative Access

Alternative Access refers to the tools and strategies that enable people with limited hand or limb movement to continue to use their SGDs, tablets, alerting call chimes, and low-tech communication systems. Alternative access is vital for people with ALS who may lose standard ways of representing their ideas like handwriting or keyboard typing. Some simple assistive technology modifications include:

Using a thick barreled pen if grip is reduced
Increasing the cursor speed of a mouse so less movement is required
Eliminating the need to double click on items to select them

Many people with ALS find using a mouse with an onscreen keyboard rather than touch typing can enable them to maintain use of their computer, tablet or SGD. For those with very weak or no arm movement, alternative access equipment can enable a person to operate an SGD or tablet with head, foot, or eye movement.

Adapted from the ALS Functional Communication Scale, Roman 2014.

Managing Speech Changes

Prior to or at the First Sign of Speech Change

When Changes in Speech Begin Causing Challenges in Communication

When Speech Doesn’t Meet All Communication Needs

Living with ALS