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.
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.
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.
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.
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