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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

  • 83

    83

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

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

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

  • Susan Anderson, Diagnosed 2014 , Hope Loves Company,  USA

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Jack Buzby, USA

    Jack Buzby, USA

  • Mauril Belanger

    Mauril Belanger

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

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

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

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Christian Bär, Germany

    Christian Bär, Germany

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Paul Launer, USA

    Paul Launer, USA

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Chen Chun-Chin

    Chen Chun-Chin

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Ali Var, Turkey

    Ali Var, Turkey

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Fabio Carvalho

    Fabio Carvalho

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

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

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

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

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

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

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

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

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

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

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

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

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

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

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Fabio Correia

    Fabio Correia

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

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

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

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