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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

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Paul Launer, USA

    Paul Launer, USA

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • unnamed

    unnamed

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

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

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

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

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

  • Ann Nicol

    Ann Nicol

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Willi Klein

    Willi Klein

  • David Bishop

    David Bishop

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Bayley, Australia

    Bayley, Australia

  • Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Roy

    Roy
    roy

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

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

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

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

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

  • Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

    Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

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

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

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Andrietta

    Andrietta

  • Wilfried Leusing

    Wilfried Leusing

  • Dick Dayton, USA

    Dick Dayton, USA

  • 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

  • Tison, USA

    Tison, USA

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Christian Bär, Germany

    Christian Bär, Germany

  • Jon Newsome, USA

    Jon Newsome, USA

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Jean

    Jean
    jean

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

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

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • IMG_1211

    IMG_1211

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