Addressing Respiratory Changes in ALS

An ALS diagnosis is shocking and frightening, but as with any disease, knowledge is power. Being aware of symptoms and how you can prepare for – and manage – them is key to quality of life and often, for peace of mind. The impact of ALS on breathing is one of the most daunting aspects of the disease and one for which you and your family can and should prepare for early in the ALS journey.

Ken Menkhaus, Ph.D., a husband, father, professor of political science and member of The ALS Association national Board of Trustees, was diagnosed with ALS in 2018. Like everyone confronting an ALS diagnosis, Ken had questions about the ALS journey he is facing.

Understanding the fears and frustrations that all people diagnosed with ALS encounter, Ken allowed The ALS Association to bring cameras along on his own fact-finding journey to understand more about the impact of ALS on his respiratory health and the kinds of decisions he and his family will face as the disease progresses. Today, Ken is sharing his conversations with physicians, health care providers and families living with ALS to help others make informed decisions about breathing support through their own ALS experience.

These videos have been developed to introduce and explain the complicated topic of breathing changes in ALS. More in-depth information is listed with each video, and we strongly encourage you to follow up with your local chapter and clinic team for more information.

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 your care team.

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

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 team works to address breathing changes.

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

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:

How Your Diet Can Impact Your Ability to Breathe

Kelly Woodbury, RD addresses the role of diet related to respiratory function.

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

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:

Equipment Used to Manage Changes in Breathing

Chris Burgess, a respiratory therapist, demonstrates the equipment commonly used to support breathing for someone 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:

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:

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:

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:

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:

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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These videos were funded in part by Ventec Life Systems.