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Overcoming Swallowing 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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3
Introduction
Who We Are
Swallowing Challenges
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 having difficulty swallowing or eating
THIS BOOK INCLUDES:
● Swallowing Diagnostics
● Eating Techniques
● Feeding Tube
● Drooling
● Suctioning & Abdominal Thrust
● Extra Tips
● Eating Techniques
● Feeding Tube
● Drooling
● Suctioning & Abdominal Thrust
● Extra Tips
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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 4/29/23.
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 4/29/23.
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. Last revision 4/29/23.
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 4/29/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
4
Swallowing Diagnostics
5
Swallow Study
Swallowing Diagnostics (Continued)
◼ A modified barium swallow study uses an x-ray to monitor swallowing. It measures the strength and muscle coordination of the esophagus (this is the pipe from the mouth to the stomach) during swallowing.
◼ The act of swallowing involves the tongue, lips, jaw and throat muscles all working together. While the PALS tries to avoid any food from going into the airway, food or water can slip into the lungs and create pneumonia.
It may be referred to as “silent aspiration” or dysphagia. This study helps identify possible silent aspiration.
◼ The act of swallowing involves the tongue, lips, jaw and throat muscles all working together. While the PALS tries to avoid any food from going into the airway, food or water can slip into the lungs and create pneumonia.
It may be referred to as “silent aspiration” or dysphagia. This study helps identify possible silent aspiration.
Video: Swallow Study
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5
Swallowing Diagnostics (Continued)
Video: PALS Perspective on Eating Challenges
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Audio - Caregiver Perspective: What's the Point of Diagnostics
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Eating Techniques
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Meal-Time Techniques
◼ Plan for meal times to take longer
◼ Eat slowly and take a drink after each bite.
◼ Consider eating smaller meals multiple times a day (instead of 3 meals).
◼ Cut food into small bites.
◼ Drink after each bite.
◼ Use the chin down technique when swallowing to close off the windpipe & Avoid talking while eating.
◼ Leverage High Nutrient Drinks (e.g. Boost, Ensure)
◼ When eating, make every bite & each swallow count by eating proteins.
◼ Consider eating at home before going out and having an easy to eat item like soup, pie or ice cream so the PALS can participate in conversation when dining with family and friends.
◼ Leverage the speech therapist to provide training on eating techniques.
◼ Eat slowly and take a drink after each bite.
◼ Consider eating smaller meals multiple times a day (instead of 3 meals).
◼ Cut food into small bites.
◼ Drink after each bite.
◼ Use the chin down technique when swallowing to close off the windpipe & Avoid talking while eating.
◼ Leverage High Nutrient Drinks (e.g. Boost, Ensure)
◼ When eating, make every bite & each swallow count by eating proteins.
◼ Consider eating at home before going out and having an easy to eat item like soup, pie or ice cream so the PALS can participate in conversation when dining with family and friends.
◼ Leverage the speech therapist to provide training on eating techniques.
◼ Breakfast: boiled egg, carnation instant breakfast, cereal soaked in milk, grits, oatmeal, omelet, scrambled eggs.
◼ Lunch: egg salad, sloppy joe, mac & cheese, tuna salad, vienna sausages.
◼ Supper: casserole, chowders, diced chicken and dumplings, gravy based meals, mashed potatoes, meat loaf, peas, quiche, refried or baked beans, salmon, shepherds pie, soups, stew.
◼Snacks: applesauce, jello, puddings, milk shakes, smoothies, yogurt.
◼Desserts: cheesecake, custard, fruit cocktail, ice cream, pie, popsicle, pudding, sherbert.
◼ Consider adding gravies & sauces to meat to help it slide down more easily.
◼ Leverage the dietician to help with ideas on high protein foods that are easy to swallow and taste good.
◼ Lunch: egg salad, sloppy joe, mac & cheese, tuna salad, vienna sausages.
◼ Supper: casserole, chowders, diced chicken and dumplings, gravy based meals, mashed potatoes, meat loaf, peas, quiche, refried or baked beans, salmon, shepherds pie, soups, stew.
◼Snacks: applesauce, jello, puddings, milk shakes, smoothies, yogurt.
◼Desserts: cheesecake, custard, fruit cocktail, ice cream, pie, popsicle, pudding, sherbert.
◼ Consider adding gravies & sauces to meat to help it slide down more easily.
◼ Leverage the dietician to help with ideas on high protein foods that are easy to swallow and taste good.
Audio - Caregiver Perspective: When Eating Becomes a Challenge