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International Alliance of ALS/MND Associations

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Speech Therapy and Communication

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.

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

  • Willi Klein

    Willi Klein

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Fabio Carvalho

    Fabio Carvalho

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Josée Kolijn-de Man, Diagnosed 2015 - ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 – ALS Patients Connected, The Netherlands

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Christian Bär, Germany

    Christian Bär, Germany

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Danny Reviers, Diagnosed 1979 - ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Art Eggert, USA

    Art Eggert, USA

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Jack Buzby, USA

    Jack Buzby, USA

  • Angie Bordaen, Diagnosed 2014 - ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Peng Yi-Wen

    Peng Yi-Wen

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • Fabio Correia

    Fabio Correia

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

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