Speech Changes in ALS

Changes in Speech 

ALS leads to speech problems when it attacks bulbar neurons. These are the nerve cells responsible for bringing messages from the lower parts of the brain (bulbar region) to the muscles that move the lips, tongue, soft palate (back of roof of mouth), jaw, and vocal folds (voice box). As nerves are lost to the disease, the muscles they control become weak and tight. This causes dysarthria – the term used to describe slow, effortful, slurred speech, and breathy or hoarse voice. Weakening lung muscles affect speech as well. Speaking may make you tired, especially later in the day. You may find yourself speaking in shorter sentences and that projecting your voice is difficult.

There is an important distinction between the dysarthria associated with ALS and the dysarthrias resulting from other conditions like a stroke. In ALS the muscles that are receiving signals from the brain must compensate for the muscles that are already weak. This means the functional muscles are doing extra work all the time to compensate and therefore, require more frequent and extended rest. In fact, rest can often help temporarily improve speech. Therapeutic oral exercises designed to strengthen muscles for people with other forms of dysarthria have not been demonstrated to improve speech for people with ALS. The movements required for speaking provide ample exercise. Stretch and massage may be recommended to reduce tightness or maintain range of movement.

Partnering with your Speech Therapist

Beginning work with a speech therapist (i.e. speech language pathologist or SLP) familiar with ALS at the earliest sign of speech or voice changes, and even prior to changes occurring, can be invaluable. As your abilities change, your speech therapist can help you to maintain or improve your communication. A speech therapist will make sure you have the tools and training to achieve each of these seven vital communication competencies throughout the progression of ALS. I can alert people in other rooms or outside the home when I have a need or emergency.

1. I can use strategies that improve communication speed, success, and reduce fatigue (whether using speech or AAC).
2. I can use a low-tech or rapid access communication system.
3. I can produce voiced messages via speech, SGD, or TTS app.
4. I can communicate with people not in my immediate environment (email, text, phone, social media, etc.)
5. My communication partners and I can independently set up, customize, and use all of the elements of my communication system.
6. I can describe a proactive strategy designed to prepare for typical changes in speech and/or computer access that I may experience.

It is essential though that you understand the abilities you can expect to maintain, and alert your therapist when updates in your system are needed.

Adapted from the ALS Functional Communication Scale, Roman 2014

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:

1. Speech Generating Devices or Text-To-Speech Apps
2. Low-Tech or Rapid Access Communication Methods
3. 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.

Voice and Message Banking 

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 environments
• Exaggerate your sounds
• Establish context
• Develop signals
• Meals and socializing
• Teach your communication partners how to help you
• Ask your doctor about assistive equipment
• 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 There Are Other Options:

• Speech Generating Devices (SGDs)
• Eye-Gaze Devices
• Low-Tech/No Tech Communication
• Alternative Access

Adapted from the ALS Functional Communication Scale, Roman 2014