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Overcoming Breathing Challenges
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Practical Knowledge Sharing for Overcoming the Daily Challenges of Living with ALS
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By St. Louis ALS Association Caregivers for ALS Caregivers
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Overview
2
Introduction
3
Breathing Challenges
Who We Are
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
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.
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.
The Purpose of This Book
THIS BOOK INCLUDES:
● 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
● 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
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
3
Who We Are
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.
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.
The Purpose of This Book
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
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
4
Breathing Diagnostics
5
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
5
Breathing Diagnostics (Continued)
Video: Breathing Diagnostics
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Audio - Caregiver Perspective: Diagnostics
6
Breathing Therapy
7
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.
● 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.