A common symptom of Amytrophic Lateral Sclerosis/Motor Neuron Disease (ALS/MND) is muscle weakness and loss of muscle function and control. This can include the loss of muscle control for aspects related to speech. The ability to speak involves the coordination of the jaw, lips, tongue, vocal cords, and breath.
People with ALS/MND will experience different rates and progression of speech disturbances. There is no way to know for sure when speech and communication disturbances will develop. Therefore, it is encouraged that people with ALS/MND continually adapt and prepare as the disease progresses such that they can meet life’s demands.
Speaking is how we often express needs, communicate opinions, ideas and feelings, and ask for assistance or help: it is closely linked with our own sense of identity. Your communication support team is integral for supporting and maintaining speech and communication. This team includes the Speech-Language Pathologist (also called a Speech and Language Therapist), or your Occupational Therapist alongside assistive technology and computer specialists and your caregiver (i.e. spouses, companions, children, healthcare providers). Tools ranging from high tech to low tech are available to support communication needs.
For more information on speech and communication, refer to the resources below.
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The following are resources from Members of the International Alliance of ALS/MND Associations on the topic of Speech Therapy and Communication.
ALS & Communication
Amyotrophic Lateral Sclerosis (ALS) can weaken the muscles you use when speaking and breathing. This can lead to speech changes ranging from mild to severe. ALS can also cause a loss of strength in the fingers, hands, and arms, which may impact your ability to communicate by writing or typing. With today’s technology, you have options to communicate with the people who are most important to you. In this ALS & Communication guide, you will learn about the speech changes that can occur with ALS. You will also learn tips for navigating through those changes. Your ALS care team can customize the best way for you to meet your communication needs.
https://lesturnerals.org/wp-content/uploads/2021/10/Communication-Guide-Final.pdf
Language: English
Subject Areas: Speech and communication, Care and Support Guides and Manuals, Equipment, Communications and Assistive Technology, For Clinicians, For Families and Caregivers
Changes in Speech and Communication Solutions
This research guide was created as part of the ALS Association’s Living with ALS Resource Guides to provide people living with ALS and caregivers with information specific to the potential changes in speech and communication. This guide covers various topics such as communication support partners, planning, and tools and strategies for when speech becomes slurred or communication is impaired.
https://www.als.org/sites/default/files/2020-04/lwals_09_2017.pdf
Language: English
Subject Areas: Speech and communication, For People with ALS/MND, For Caregivers, Care and Support Guides, For Families and Caregivers
(7c) Speech and Communication Support
The MND Association (MNDA) developed a guide with information on how ALS/MND may impact speech and communication in people with ALS/MND. This resource provides people with ALS/MND answers to some common questions on speech and communication. It covers how speaking and communication will be affected, strategies to maintain speech, available communication aids, and where to seek more information.
https://www.mndassociation.org/app/uploads/7C-Speech-and-communication-support-1.pdf
Language: English
Subject Areas: For People with ALS, For Caregivers, Speech and Communication, Communication Aids
Speech and Communication [leaflet]
This leaflet created by the Irish MND Association (iMNDA) provides individuals with ALS/MND a guide on alternative communication strategies and equipment that may be beneficial for individuals with ALS/MND who may have impaired speaking and communication abilities.
http://imnda.ie/wp-content/uploads/2014/03/9-SPEECH-AND-COMMUNICATION.pdf
Language: English
Subject Areas: For people with ALS/MND, Speech and Communication, Equipment, Communication aids
Communication Tools and Resources
The ALS Centrum Nederland has various resources available to people with ALS and caregivers on different aspects of speech and communication. Technological communicative aids, writing aids, and other tools are discussed in detail.
https://www.als-centrum.nl/themas/hulpmiddelen/communicatie/
Language: Dutch, English
Subject Areas: Speech and Communication, For People with ALS, For Caregivers, Technological Aids, Tools, Communication Aids
E-Course “Communication Aids in ALS”
The ALS Centrum Nederland has an e-course available for speech therapists, occupational therapists, and nurses who support people with ALS/MND. This course may also be beneficial for caregivers of people with ALS/MND. The course is designed for healthcare members or caregivers to deepen their understanding of communication needs for people living with ALS/MND and learn more about technological aids for communication in people with ALS/MND.
https://www.als-centrum.nl/kennisplatform/e-cursus-communicatiehulpmiddelen-bij-als/
Language: Dutch
Subject Areas: Speech and Communication, For Healthcare Providers, For CALS, Communication Aids, Technological Aids, Education and Training
Dysarthria
This informative guide is for health and social care professionals. The manual describes dysarthria, the causes, impacts, and treatment.
https://www.mndassociation.org/professionals/management-of-mnd/management-by-symptoms/dysarthria/
Language: English
Subject Areas: Speech and Communication, For Clinicians