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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

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

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

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

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Cath Muir

    Cath Muir
    Cath

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Ali Var, Turkey

    Ali Var, Turkey

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Fabio Correia

    Fabio Correia

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

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

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

  • Jon Newsome, USA

    Jon Newsome, USA

  • Jack Buzby, USA

    Jack Buzby, USA

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

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

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

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • JP

    JP

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

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