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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 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

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Wilfried Leusing

    Wilfried Leusing

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

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

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

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

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

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

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • 727747090571358167

    727747090571358167

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Art Eggert, USA

    Art Eggert, USA

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Peng Yi-Wen

    Peng Yi-Wen

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • IMG_1211

    IMG_1211

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    unnamed

  • 83

    83

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

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

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

  • Dick Dayton, USA

    Dick Dayton, USA

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
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  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

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

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

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

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