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OvercomingBulbar Onset 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
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Introduction
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Overcoming Bulbar Onset Challenges
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
THIS BOOK WILL BENEFIT: Those who have bulbar onset ALS affecting the muscles of the throat, tongue, jaw and face.
THIS BOOK INCLUDES:
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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. Last revision 7/3/23.
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. Last revision 7/3/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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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. Last revision 7/3/23.
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. Last revision 7/3/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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Bulbar Basics
Video: Bulbar ALS Explained
What is Bulbar Onset ALS
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◼ There is no bulbar ALS-specific diagnostic test. The ALS symptoms and diagnosis is made on the physical signs shown by the pALS. Doctors use physical examination to assess swallowing, lip and tongue strength, and speech. They are looking for muscle weakness and atrophy in the jaw, face, tongue and palate.
◼ ALS onset is typically identified in spinal form with muscle weakness and atrophy in the limbs and trunk or bulbar form affecting the muscles of the tongue, throat, jaw and face.
◼ Bulbar-onset ALS generally starts with symptoms like slurred speech, difficulty chewing and swallowing, excessive choking and weakness or twitching in the muscles of the face or tongue.
◼ While these symptoms first appear in the face and neck, they will eventually begin to occur in other parts of the body.
◼ Because bulbar-onset ALS tends to progress faster than limb onset, it is very important for the caregiver to be proactive in the pALS care. It will be very important to be hyper-aware of pALS signs and symptoms changes and share this with the clinic team. They can partner in creating forward leaning plans for equipment and medications enabling the pALS & caregiver to "get ahead of the curve" in preparing for any decline.
◼ ALS onset is typically identified in spinal form with muscle weakness and atrophy in the limbs and trunk or bulbar form affecting the muscles of the tongue, throat, jaw and face.
◼ Bulbar-onset ALS generally starts with symptoms like slurred speech, difficulty chewing and swallowing, excessive choking and weakness or twitching in the muscles of the face or tongue.
◼ While these symptoms first appear in the face and neck, they will eventually begin to occur in other parts of the body.
◼ Because bulbar-onset ALS tends to progress faster than limb onset, it is very important for the caregiver to be proactive in the pALS care. It will be very important to be hyper-aware of pALS signs and symptoms changes and share this with the clinic team. They can partner in creating forward leaning plans for equipment and medications enabling the pALS & caregiver to "get ahead of the curve" in preparing for any decline.
Video: Bulbar ALS Explained
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Video: pALS Bulbar Onset ALS Experience
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Bulbar Basics (Continued)
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What Part of the Body Is Affected
What Part of the Body Is Affected (Continued)
◼ Not every person living with bulbar ALS experiences the exact same symptoms. Every pALS journey is truly unique. No matter how the disease begins, most pALS will, at some point, experience bulbar symptoms.
◼ Bulbar onset ALS impairs swallowing
◼ Bulbar onset ALS affects the ability to speak
◼ Bulbar onset ALS can cause involuntary tongue twitching (fasciculation). Fasciculation looks like worms squirming under the tongue. The pALS may never "feel" the quivering or twitching.
◼ Bulbar onset ALS can cause vocal cord spasms.
◼ Bulbar onset ALS can cause spasms or twitching of the jaw, throat and tongue or brisk jaw jerks.
◼ The pALS with bulbar onset ALS are prone to infections like pneumonia. This is because the respiratory infections weaken the diaphragm and chest muscles. Then, the lungs can't clear themselves of aspirations. The pALS may find it difficult to breathe, especially at nights. This can represent with headaches, nightmares and sleepiness during day.
◼ Bulbar onset ALS impairs swallowing
◼ Bulbar onset ALS affects the ability to speak
◼ Bulbar onset ALS can cause involuntary tongue twitching (fasciculation). Fasciculation looks like worms squirming under the tongue. The pALS may never "feel" the quivering or twitching.
◼ Bulbar onset ALS can cause vocal cord spasms.
◼ Bulbar onset ALS can cause spasms or twitching of the jaw, throat and tongue or brisk jaw jerks.
◼ The pALS with bulbar onset ALS are prone to infections like pneumonia. This is because the respiratory infections weaken the diaphragm and chest muscles. Then, the lungs can't clear themselves of aspirations. The pALS may find it difficult to breathe, especially at nights. This can represent with headaches, nightmares and sleepiness during day.
◼ The pALS with bulbar onset is prone to drooling.
◼ The pALS with bulbar onset may have difficulty in closing their mouth or eyelids.
◼ The pALS with bulbar onset may have difficulty in closing their mouth or eyelids.