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International Alliance of ALS/MND Associations

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      • Amylyx – AMX0035
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Speech Therapy and Communication

A common symptom of 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.

Free AI Voice Cloning for People Living with ALS/MND

ElevenLabsThrough the ElevenLabs Impact Program, anyone living with ALS/MND — anywhere in the world — can access a free Pro voice clone license. A voice clone is a personalized AI replica of your own voice that can be added to a communication device and used to speak on your behalf.

Getting started takes three steps:

  1. Create your ElevenLabs account through the Impact Program. 
    • Watch the step-by-step video tutorial
    • Download the guide to apply for an Elevenlabs Pro account
  2. Record or upload audio files of your voice.
  3. Add your voice clone to your communication device.

Speech Therapy and Communication Videos

Click on the icon below to visit our playlist of videos related to Speech Therapy and Communication.


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

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Care services

  • Genetic Counselling & Testing
  • Mental Health Support
  • Nursing and Symptom Management
  • Nutrition and Swallowing
  • Occupational Therapy and Activities of Daily Living
  • Physiotherapy and Mobility
  • Respiratory Care
  • Speech Therapy and Communication
  • Support for Family & Caregivers
  • Technology

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Fabio Carvalho

    Fabio Carvalho

  • Peng Yi-Wen

    Peng Yi-Wen

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Lombana, Spain

    Lombana, Spain

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • unnamed

    unnamed

  • Marcel R. Wernard, Diagnosed 2016,  ALS Patients Connected,  The Netherlands

    Marcel R. Wernard, Diagnosed 2016, ALS Patients Connected, The Netherlands

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Dad

    Dad

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Mauril Belanger

    Mauril Belanger

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Jack Buzby, USA

    Jack Buzby, USA

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

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