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International Alliance of ALS/MND Associations

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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 and there could be potential carbon dioxide retention. 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, morning headache, 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:

  • Pulmonologist
  • Respiratory Therapist
  • General practitioner
  • Neurologist
  • Physiotherapist
  • Speech-language pathologist
  • Occupational therapist
  • Dietitian
  • 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

ALS & Breathing

In this resource guide, you’ll find helpful information outlining how ALS affects breathing, symptoms of respiratory muscle weakness, breathing evaluations, oxygen and ALS, the impact on mucus, runny noses, oral care, and saliva have on People Living with ALS, non-invasive therapies, invasive ventilation, and more. For more information visit https://www.lesturnerals.org/resources

https://lesturnerals.org/wp-content/uploads/2021/10/Respiratory-Guide-Final.pdf

 

Language: English
Subject Areas: Respiratory Care, Care and Support Guides and Manuals, For Clinicians, For Families and Caregivers

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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

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Chen Chun-Chin

    Chen Chun-Chin

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Art Eggert, USA

    Art Eggert, USA

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Peng Yi-Wen

    Peng Yi-Wen

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • David Bishop

    David Bishop

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

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

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

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

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

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

  • Jack Buzby, USA

    Jack Buzby, USA

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Ali Var, Turkey

    Ali Var, Turkey

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

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

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Mark Miller

    Mark Miller

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Elkin Ramiro Gaviria Muñoz, Diagnosed  December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • 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

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

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