How ALS Affects Breathing

Dr. Lou Libby, pulmonologist at The Providence ALS Center at the Oregon Clinic, discusses the muscles we use to breathe, and the importance of having a care plan and a pulmonologist on that care team.

For additional information about breathing changes and ALS, please refer to the following resources:

• Adapting to Changes in Breathing When You Have ALS - Resource Guide
• Dealing with Breathing Issues
• Breathing Difficulties

Nurse Coordinators Are at the Heart of Your Multidisciplinary Team

ALS Clinic nurse, Lauren Brown, shares the role of the clinic nurse and how the multidisciplinary care team works to address breathing changes.

For additional information about nursing care and the multidisciplinary care team, please refer to the following resources:

• Nursing Management in ALS
• Including the Multidisciplinary Team Approach in Your Care
• Find a Certified Center or Clinic

Managing your Energy and Movement to Optimize Breathing

Beth Blackford, PT, and Deborah Fulkerson, OT, discuss how positioning and energy conservation can impact breathing and offer strategies to help maximize respiratory function throughout the day.

For additional information about energy conservation, please refer to the following resource:

• Minimizing Fatigue

How Your Diet Can Impact Your Ability to Breathe

Kelly Woodbury, RD, addresses the role of diet as it relates to respiratory function.

For additional information about nutrition and ALS, please refer to the following resources:

• Adjusting to Swallowing Changes and Nutritional Management in ALS
• 11 Ways to Maintain Nutrition in People with ALS
• Information About Feeding Tubes

Interventions for Respiratory Decline

Dr. Libby explains the various interventions available to help with respiratory challenges.

For additional information about respiratory interventions, please refer to the following resources:

• Adapting to Changes in Breathing When You Have ALS - Resource Guide
• Respiratory Challenges in ALS – Coughing

Equipment Used to Manage Changes in Breathing

Chris Burgess, a respiratory therapist, demonstrates the equipment commonly used to support breathing for someone living with ALS and addresses common questions related to the equipment.

For additional information about equipment used to address respiratory complications, please refer to the following resource:

• Dealing with Breathing Issues

Non-Invasive vs. Invasive Ventilation

Dr. Libby explains the difference between non-invasive and invasive ventilation.

For additional information about ventilatory support, please refer to the following resource:

• Dealing with Breathing Issues

Care Needs After a Tracheotomy

Adam Turigliatto, a respiratory therapist, explains the care needs for someone after having a tracheotomy.

For additional information about home health care, please refer to the following resources:

• Living with ALS at Home
• Different Types of Home Care Workers

The Choice to Withdraw Treatment 

Dr. Libby discusses withdrawal of treatment.

For additional information about end-of-life care, please refer to the following resources:

• Advance Directives
• Hospice Care
• Approaching End of Life in ALS

Living on a Ventilator: One Family’s Journey

Jeremy VanTress shares his experience of choosing to have a tracheotomy, while his wife Courtney talks about the impact of the decision as a spouse and caregiver.

For additional information about caregiving, please refer to the following resource:

• For Caregivers

Challenges of Invasive Ventilation

Jeremy and Courtney VanTress address the challenges of invasive ventilation and considerations related to traveling.

For additional information about traveling, please refer to the following resource:

• Helpful Tips for Traveling

Advice for Planning Ahead

Donnie Graham and his wife, Jan Steinbock, share their advice for planning and caregiving related to respiratory issues.

For additional information about caregiving, please refer to the following resource:

• Medical Information Materials
• Handling Hospital Visits When You Have ALS
• Emergency Preparedness
• Smart Home Technology

Acknowledgements

We would like to extend a sincere thank you to all who participated in the filming of these videos.

• Ken Menkhaus and his family, for his time and for allowing us to share this very personal journey
• Dr. Lou Libby, member of The ALS Association Board of Trustees, for his knowledge, participation and support
• The clinicians who shared their time and expertise
• The Van Tress and Graham-Steinbock families who welcomed us into their homes and their lives and openly shared their experiences
• Our colleagues at The ALS Association Oregon & Southwest Washington Chapter and the North Carolina Chapter
• The Providence ALS Center in Portland, OR

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