Overcoming Breathing Challenges

Overcoming
Breathing Challenges

Practical Knowledge Sharing for Overcoming
the Daily Challenges of Living with ALS

By ALS Caregivers for ALS Caregivers

Overview

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Introduction

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Breathing Challenges

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Who We Are

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THIS BOOK WILL BENEFIT: Those having difficulty breathing, become short of breath when speaking, have difficulty "catching their breath" or have frequent chest congestion. Those falling asleep during the day or during conversations

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We are not experts. We are not vendors.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.

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The Purpose of This Book

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THIS BOOK INCLUDES:

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● Breathing Diagnostics
● Breathing Therapy
● Pulse Oximetry
● Inhaler
● Nebulizer
● Breathing Equipment
● Occasional Breathing Assistance
● Full-Time Breathing Assistance
● Cough Assist Machine
● The Cough Vest
● Suctioning & Abdominal Thrust
● Hospitalizations

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What This Is Not: This is not a therapy or group counseling session. This is not a vendor sales pitch or health care experts providing “book based” advice.

What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease.

If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org

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ALSCaregivers.org

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Who We Are

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We are not experts. We are not vendors.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.

Loading...

The Purpose of This Book

Loading...

What This Is Not: This is not a therapy or group counseling session. This is not a vendor sales pitch or health care experts providing “book based” advice.

What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease.

If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org

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Breathing Diagnostics

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Different measures of respiratory function are used to gauge respiratory strength as the disease progresses. As the diaphragm muscle weakens, the lung volume becomes smaller. During the ALS clinic, the respiratory therapist will complete lung function tests. Important: The number doesn’t define the PALS. It is just a number for medical teams to understand progression and for use with some insurance approvals for breathing related equipment.

◼ FEV

● Forced Expiratory Volume measures the amount of air you can force from your lungs. This is collected as part of the “Pulmonary Function Test”. Normal is >70%

◼ FVC

● Forced Vital Capacity measures the amount of air you can force from your lungs after taking the deepest breath possible. This is collected as part of the “Pulmonary Function Test”. Normal is >70%

◼ MEP

● Maximal Expiratory Pressure measures “exhaling” muscles. Normal is >+40 cm

◼ MIP

● Maximal Inspiratory Pressure measures “inhaling” muscles. Normal >-20 cm

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ALSCaregivers.org

Breathing Diagnostics (Continued)

Video: Breathing Diagnostics

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Audio - Caregiver Perspective: Diagnostics

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Breathing Therapy

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Common Breathing Exercises

Partner with the respiratory therapist and pulmonologist to establish a breathing therapy plan. The exercisers are used to improve the volume of air received when breathing in and helps keep lungs clear of mucus making breathing easier.

◼ Acapella Vibratory inhalers can be used to clear mucus.

Breathing Techniques

◼ There are a number of techniques to help with shortness of breath.

● Pursed Lips breathing. It slows the pace of breathing making each breath deeper and more effective. The PALS breathes in thru the nose with the mouth closed, put the lips into a whistle shape and breathe out slowly.

● Sitting forward. This creates more space in the chest cavity for the lungs.

● Some PALS have found keeping the environment cool or using a fan to blow cool air helps relieve shortness of breath.

● Some PALS have found drinking coffee helps relax airway muscles.

◼ A Respironics Threshold IMT Inspiratory Muscle Trainer is used to improve respiratory strength.

Medications

◼ "Comfort” medicines are available to address anxiety and often makes breathing easier (e.g. Zanex, oral morphine, adavant). Some have found CBD gummies enable relaxation.

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ALSCaregivers.org

Common Breathing Exercises

◼ Voldyne 5000 spirometer breathing exerciser.

● Has an indicator that floats up as the PALS inhales. There are movable “goal” indicators as a reminder of the target range.

◼ Acapella Vibratory inhalers can be used to clear mucus.

● Place it in the mouth. Breathe in deeply. Hold your breath for a few seconds then breathe out over 6-9 seconds keeping the mouthpiece in place.
● It has adjustable resistance settings.

◼ A Respironics Threshold IMT Inspiratory Muscle Trainer is used to improve respiratory strength.

● Placed in the mouth and just breathe in and out against the recommended pressure.
● It has adjustable pressure settings.

◼ A EMST150 is used to strengthen the muscles that help you breathe out.

● Apply the nose clip. Make a tight seal with your mouth. Blow hard and fast.
● It has adjustable resistance settings.

Medications

◼ "Comfort” medicines are available to address anxiety and often makes breathing easier (e.g. Zanex, oral morphine, adavant). Some have found CBD gummies enable relaxation.

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Breathing Therapy (Continued)

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What Is Supplemental Oxygen

How Is Supplemental Oxygen Administered

◼ Oxygen therapy should not be considered for a person with ALS. However, if the PALS has COPD, asthma, emphysema, or other related issues, oxygen can and is prescribed by the pulmonologist. It can also be prescribed to relieve symptoms of air hunger in the later phases of the disease.

◼ Some pALS choose to wear a medical alert bracelet to advise emergency care providers that they have ALS and not to give oxygen but rather assist with breathing using a bag mask or a ventilator.

◼ The concern with using oxygen with PALS that don’t have any other underlying respiratory disease is that it can cause the PALS to have even more shallow breathing. The PALS is already not breathing as deep as they should due to diaphragm muscle weakness. Carbon dioxide build up in the body can be life threatening.

◼Getting enough oxygen is not typically a problem for pALS. The problem is inhaling deeply enough to get enough air in.

◼Signs of c02 build up include sleeping all the time, headaches, unusually confused, or has a low level of consciousness. Typically, as the person with ALS gets short of breath (leaning forward and panting quickly with shallow fast breaths), they reach out for help.

◼ For those with respiratory disease along with ALS, a max of 2 liters of oxygen therapy is used to improve shortness of breath, reduce strain on the lungs, makes physical exertion less tiresome.

◼ Typically and oxygen concentrator has tubing that is tubing into a ventilator or to a nasal cannula. The concentrator rental is paid for by insurance and a local provider maintains your related supplies.

◼ Portable oxygen concentrators (e.g. Inogen) can be obtained for when you leave home.

◼ A nasal cannula can also be used to administer low dose oxygen.