• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • Instagram
  • Twitter
  • YouTube

International Alliance of ALS/MND Associations

  • Members' Login
  • Contact
  • Join the Alliance
  • Donate
  • What is ALS/MND
  • Find a Member Association
  • Support for PALS & CALS
    • Advocacy
      • Fundamental Rights of People with ALS/MND and Caregivers
      • Advocacy Toolkit
      • Understanding ALS/MND Research
      • Drug Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
      • Open Label Extension
      • Expanded Access
    • 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
    • Drugs in Clinical Trial
      • Amylyx – AMX0035
      • Biogen – Tofersen
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • Collaborative Medicinal Development – CuATSM
      • Cytokinetics – Reldesemtiv
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Orphazyme – Arimoclomol
      • T Regulatory Cell Therapies
    • Approved Drugs
      • Riluzole/Tiglutik
      • Radicava/Edaravone
      • Neudexta
  • Events/Programs
    • Calendar of Events/Programs
    • Alliance Webinars
    • Alliance Meeting
    • Allied Professionals Forum
    • ALS/MND Connect
    • Global Day
    • March of Faces
    • International Symposium on ALS/MND
  • About
    • Who We Are
    • Board of Directors
    • Committees/Advisory Councils
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Governance Committee
      • Budget and Finance Committee
    • Staff
    • History
    • Archives
      • Newsletters
      • Meetings
    • Awards
  • Members
    • Member Registration
    • Forgot Password

Respiratory Care

Due to the weakening of muscles that occurs as the disease progresses, breathing and respiratory functions of people living with ALS/MND will become affected.

Breathing is how the body obtains oxygen and how it rids carbon dioxide. Two muscle types are involved in the process of breathing: the intercostals and the diaphragm. When the respiratory muscles weaken, breathing becomes shallow and less air enters the lungs. This can impact the body as a whole as less oxygen is available for the body to use. Shallow breathing can also cause strains to the neck and shoulders as a person may use the muscles of these areas to help deepen their breath. The effects of respiratory muscle weakness can include shortness of breath, difficulty speaking or eating for long periods, sleep disturbances, muscle strains, and overall fatigue.

When a person living with ALS/MND experiences symptoms of respiratory muscle weakness, they can access their multidisciplinary healthcare team for support. The multidisciplinary healthcare team for supporting respiratory could include:

  • General practitioner
  • Respiratory physician
  • Neurologist
  • Physiotherapist
  • Speech-language pathologist
  • Occupational therapist
  • Dietitian
  • Specialist respiratory nurse
  • Social worker
  • Psychiatrist

These members of the multidisciplinary healthcare team can work to support the many aspects of respiratory function and care for an individual living with ALS/MND. Additionally, a person may have to consider using aids and equipment to support respiratory function, such as a ventilator.

People living with ALS/MND can manage respiratory care early on using non-invasive ventilation. This method is used to support a person’s own breathing via nose or face mask. It provides additional air flow to your own. Non-invasive ventilators should be considered early on to support and maintain respiratory care whereas tracheostomy ventilation is considered as the disease progresses and respiratory function declines. The multidisciplinary healthcare team can discuss ventilation options and help in making the best decision based on an individual’s own needs at the time and their symptoms.

For more information on respiratory care and support, refer to the resources provided below.

Click on the icon below to visit our playlist of videos related to Respiratory Care.

The following are resources from Members of the International Alliance of ALS/MND Associations on the topic of Respiratory Care.

Addressing Respiratory Changes in ALS

This extensive resource is provided by the ALS Association (ALSA) for people with ALS/MND and caregivers. It is a great starting spot for an individual who has recently been diagnosed with ALS/MND. There is information on what to expect regarding breathing and disease progression, managing breathing with ALS/MND, and finding information about the multidisciplinary healthcare team for respiratory care. There are videos throughout this resource from healthcare professionals to further discuss breathing support and respiratory care. This page also supplies additional resources that may be beneficial for people searching for more information for respiratory care with ALS/MND.

https://www.als.org/navigating-als/living-with-als/therapies-care/addressing-respiratory-changes

Language: English
Subject Areas: Respiratory Care, Breathing Support, Multidisciplinary Healthcare Team, For People with ALS/MND, For CALS

Breathing and MND: Introduction

MND Australia provides a short fact sheet in their “Living Better for Longer” resource series for newly diagnosed people with ALS/MND. This resource discusses how breathing may be affected by ALS/MND disease progression and what to expect.

https://www.mndaust.asn.au/Get-informed/Information-resources/Living_better_for_longer/WEB-MND-Australia-Fact-Sheet-EB5-Breathing-and-MND.aspx

Language: English
Subject Areas: For People with ALS/MND, For Caregivers, Breathing Support, Respiratory Care

Support for Breathing Problems

This guide created by the MND Association (MNDA) may aid people with ALS/MND and caregivers to find information on their respiratory healthcare team and what to expect regarding the progression of ALS/MND and its impact on breathing. This resource also discusses various treatments and therapies offered to individuals to support their breathing problems.

https://www.mndassociation.org/app/uploads/2015/07/8A-Support-for-breathing-problems.pdf

Language: English
Subject Areas: Healthcare Team, Breathing, Ventilation, For People with ALS, For CALS

Adapting to Changes in Breathing when you Have ALS

Created as part of the ALS Association’s (ALSA) Living With ALS Resource Guides, this guide delivers a wide breadth of information on breathing for people with ALS/MND. This resource discusses the mechanisms of breathing and how the progression of ALS/MND may impact breath. Additionally, the guide supplies information on different breathing assistance devices.

https://www.als.org/sites/default/files/2020-04/lwals_10_2017.pdf

Language: English
Subject Areas: Breathing, Respiratory Care, For People with ALS/MND, Breathing Assistance, For People with ALS/MND

Breathing and MND: What You Can Do

This factsheet was developed by MND Australia under their “Living Better for Longer” resource series. It provides people with ALS/MND and caregivers with different strategies to support breathing with MND.

https://www.mndaust.asn.au/Get-informed/Information-resources/Living_better_for_longer/WEB-MND-Australia-Fact-Sheet-EB6-Breathing-and-MND.aspx

Language: English
Subject Areas: Breathing Support, Respiratory Care, For People with ALS/MND, For CALS

Dealing with Breathing Issues

This short resource created by the ALS Association (ALSA) provides an introductory summary of breathing and coughing techniques for people with ALS/MND. This page also offers information on other coughing and breathing equipment.

https://www.als.org/navigating-als/living-with-als/therapies-care/addressing-respiratory-changes/dealing-with-breathing-issues

Language: English
Subject Areas: Breathing, Respiratory Care, Breathing Techniques, Ventilators, For People with ALS/MND

Breathing and Ventilation

The MND Association’s (MNDA) page on breathing and ventilation provides information for people living with ALS/MND. It includes information on how breathing may be affected and when a person may require a ventilator. This resource also supplies answers to how a ventilator works and the process of withdrawal of ventilation.

https://www.mndassociation.org/support-and-information/living-with-mnd/breathing-and-ventilation/

Language: English
Subject Areas: Breathing, Ventilation, End-of-Life Care, For People with ALS/MND

Ventilation for MND

This is a detailed guide on ventilation for people with ALS/MND created by the MND Association (MNDA). People with ALS/MND and caregivers can find information on when a person may require a ventilator, the necessary support to maintain a ventilator. This guide also differentiates traditional ventilation systems and non-invasive ventilators. The multidisciplinary healthcare team involved in supporting respiratory care and ventilators is also discussed.

https://www.mndassociation.org/app/uploads/2015/07/8B-Ventilation-for-motor-neurone-disease.pdf

Language: English
Subject Areas: Ventilation, Respiratory Care, For People with ALS/MND, For CALS

Medications and Non-Invasive Ventilation

MND Australia created an informative guide on the different medication, therapy, and treatment options for breathing support with ALS/MND. This guide for people living with ALS/MND and caregivers also provides a list of questions people may want to consider and ask their respiratory healthcare team.

https://www.mndaust.asn.au/Get-informed/Information-resources/Living_better_for_longer/WEB-MND-Australia-Fact-Sheet-EB7-Breathing-and-MND.aspx

Language: English
Subject Areas: Respiratory Care, Ventilation, Breathing Support, For People with ALS/MND, For CALS

myBreathing

This resource provides information for people with ALS/MND to help navigate support for breathing. There are various videos from other people with ALS/MND in which they share their own experiences.

http://mybreathing.mymnd.org.uk/

Language: English
Subject Areas: Breathing, Respiratory Care, Ventilation, Non-Invasive Ventilators, For People with ALS/MND

Primary Sidebar

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

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

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

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

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

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

  • David-Bishop-copy-2

    David-Bishop-copy-2

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • 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

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Elizabeth-y-Juvenal-v2

    Elizabeth-y-Juvenal-v2

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Mark-Miller

    Mark-Miller

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • 9B63A612-09B4-453E-8430-B76DB0AB5196

    9B63A612-09B4-453E-8430-B76DB0AB5196

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Ian Roberts

    Ian Roberts

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

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

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

  • MoF-Christian-Bär

    MoF-Christian-Bär

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • 20200117_214643

    20200117_214643

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • jspic

    jspic

  • Daniel-Hare-copy

    Daniel-Hare-copy

  • Ailsa Malcolm-Hutton, Diagnosed 2013 - MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013 – MND Association of England, Wales and N Ireland

  • MND-Robbie-Caliste

    MND-Robbie-Caliste

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

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

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

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

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

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

  • Valdomiro-Xavier-Honorio-ABrELA

    Valdomiro-Xavier-Honorio-ABrELA

  • ALS-0571

    ALS-0571

  • Elkin-Ramiro-Gaviria-Muñoz-diagnosed-Dec-2018-v3

    Elkin-Ramiro-Gaviria-Muñoz-diagnosed-Dec-2018-v3

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • roy

    roy

  • pALS-Guido-De-Mets-ALS-Liga-Belgium

    pALS-Guido-De-Mets-ALS-Liga-Belgium

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

Learn more about the March of Faces

Subscribe to our Bi-Monthly Newsletter

Fill out the form below to subscribe to the Alliance’s bi-monthly newsletter, packed with updates from members associations from around the world!

Footer

Keep in touch

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

"*" indicates required fields

 
This field is for validation purposes and should be left unchanged.

  • Email
  • Facebook
  • Instagram
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2022 The International Alliance of ALS/MND Associations. All rights reserved.


Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login