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International Alliance of ALS/MND Associations

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      • Amylyx – AMX0035
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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 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

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

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Jon Newsome, USA

    Jon Newsome, USA

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Ali Var, Turkey

    Ali Var, Turkey

  • 727747090571358167

    727747090571358167

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Shay Rishoni

    Shay Rishoni

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Peng Yi-Wen

    Peng Yi-Wen

  • JP

    JP

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Fabio Carvalho

    Fabio Carvalho

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Jean

    Jean
    jean

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • unnamed

    unnamed

  • Wilfried Leusing

    Wilfried Leusing

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • IMG_2658

    IMG_2658

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

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