Respiratory Care

Why is respiratory care important?

Neuromuscular disorders cause progressive muscle weakness, which can impact the muscles used in breathing and coughing. Weak respiratory muscles can put you at risk for respiratory failure, which is a common cause of death in people with neuromuscular disorders.

Thanks to advances in clinical care and research there are things that you can do to manage the respiratory effects of neuromuscular disorders.

What can I do?

Educate yourself There are preventative measures and interventions that can be help you maintain your respiratory health and treat respiratory complications. Prevention and appropriate treatment of respiratory complications is critical in order to prevent long term hospital admissions, loss of independence or life threatening conditions.

Know the signs of respiratory insufficiency

  • sleeping more often
  • constant fatigue
  • occasional confusion
  • difficulty concentrating
  • muscle twitching that previously did not exist
  • constant or periodic headache
  • significant shortness of breath at rest
  • difficulty sleeping or lying down
  • unconsciousness or difficulty waking

Learn More: Read the Guide to Respiratory Care for Neuromuscular Disorders

 

Media

Dr. Sherri Katz

In-depth Look at Pediatric Respiratory Care
Video Presentation

Presenter: Dr. Sherri Katz, CHEO
Event: Respiratory Management in Neuromuscular Disease
September 21, 2013
Length: 57:16

Dr. Doug McKim

In-depth Look at Adult Respiratory Care
Video Presentation

Presenter: Dr. Doug McKim, Director of the Respiratory Rehabilitation Program, Ottawa Hospital
Event: Respiratory Management in Neuromuscular Disease
September 21, 2013
Length: 44:49

Joe Foote and Lori Giles

Strategies to Care for your Breathing Muscles
Video Presentation

Presenter: Joe Foote and Lori Gilles, RT, Quality Respiratory Care
Event: Respiratory Management in Neuromuscular Disease
September 21, 2013
Length: 54:56

Panel Discussion

Panel Presentation – Clients and Service Providers
Video Presentation

Facilitator: Stacey Lintern, Stacey Lintern, Executive Director, Ontario Region
Event: Respiratory Management in Neuromuscular Disease
September 21, 2013
Length: 56:34

 

Publications

Guide to Respiratory Care for Neuromuscular Disorders

Muscular Dystrophy Canada has collaborated with clinicians and allied health professionals from across Canada to produce a publication focused on respiratory care for people affected by neuromuscular disorders.

With an emphasis on prevention and being informed, the document provides user-friendly descriptions and essential information for patients and families. The topics include:

  • Introduction to the respiratory system
  • Monitoring your respiratory status
  • Pulmonary hygiene therapies (Breath stacking and assisted cough techniques)
  • Symptoms of respiratory failure
  • Being prepared in case of a respiratory crisis
  • Mechanical ventilation (types, planning and decision making, getting started)
  • Important considerations, including appropriate use of oxygen therapy; anaesthesia; travel; nutrition and hydration; communicating; legal documents concerning
  • Resources for additional information

If you would like to receive a printed copy of the Respiratory Care Guide, please contact your local office, or call 1-866-687-2538 or email info(at)muscle.ca

The Case for Support for Respiratory Care Project

outlines the above issues and concludes with providing recommendations for the important leadership role Muscular Dystrophy Canada can play in addressing priority actions to improve the lives of people with neuromuscular diseases.

Home Mechanical Ventilation: Clinical Practice Guideline

This document contains detailed information regarding home mechanical ventilation for patients with DMD (pages 109-124); other muscular dystrophies and myopathies (pages 125-131);and myotonic dystrophy (pages 132-137). Executive Summary

Useful Links

International Ventilator Users Network

This site contains resources, tools and information for people using ventilators

The Center for Noninvasive Mechanical Ventilation Alternatives and Pulmonary Rehabilitation

Based at the University Hospital, Newark, New Jersey, this center consists of physicians and other health care professionals dedicated to the care of patients with neuromuscular weakness and respiratory impairment from any cause. Led by Dr. John Bach, the Center provides real hope for patients who are thought to be without any options through conventional management.

The Rehabilitation Centre, Ottawa

The Centre’s Institute for Rehabilitation Research and Development website contains online education modules for ventilation and respiratory care, including protocols for specifically for neuromuscular disorders.
The Ottawa Hospital’s CANVent Program

Ventilation Centre of Excellence

West Park Heath Care Centre provides information and online e-learning modules for individuals and their caregivers about long term ventilation.

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