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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
Who We Are
Infusions
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: Anyone currently taking infusion medications or considering it
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 9/9/22.
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 9/9/22.
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 9/9/22.
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 9/9/22.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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Infusion Overview
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What Are Infusions
Extra Tips
◼ Infusion therapy is where medication is delivered directly into a blood vessel.
◼ Basic infusion supplies include:
◼ Basic infusion supplies include:
● Gloves for cleanliness.
● Bags containing medication.
● Drip set that connects the medication bag to the line going into the blood vessel and regulates the flow.
● Alcohol pads for cleaning the injection sites.
● Syringes like normal saline for flushing the port.
● Tape to tape up the tubing when not in use.
● Needles, dressings, and supplies for accessing the port.
● Bags containing medication.
● Drip set that connects the medication bag to the line going into the blood vessel and regulates the flow.
● Alcohol pads for cleaning the injection sites.
● Syringes like normal saline for flushing the port.
● Tape to tape up the tubing when not in use.
● Needles, dressings, and supplies for accessing the port.
◼ Edaravone (Radicava) is an ALS treatment that is currently delivered via infusion. The schedule for this medication is every day for 10 days and then off for 14 days. There are some trials occurring with an oral formulation of Edaravone
◼ When medications or flushes are administered it is not uncommon to have it leave an odd taste in the mouth (even though the medicine is going straight into the blood vessel).
◼ When medications or flushes are administered it is not uncommon to have it leave an odd taste in the mouth (even though the medicine is going straight into the blood vessel).
◼ The medication must slowly drip into the body so infusion therapy will take at least an hour.
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Extra Tips
◼ Edaravone (Radicava) is an ALS treatment that is currently delivered via infusion. The schedule for this medication is every day for 10 days and then off for 14 days. There are some trials occurring with an oral formulation of Edaravone
◼ When medications or flushes are administered it is not uncommon to have it leave an odd taste in the mouth (even though the medicine is going straight into the blood vessel).
◼ When medications or flushes are administered it is not uncommon to have it leave an odd taste in the mouth (even though the medicine is going straight into the blood vessel).
Video: PALS Perspective on Edaravone (Radicava)
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PICC Lines and Ports
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Port
◼ A portacath is a central line going into a major vessel near the heart that sits under the skin. Insertion of the Bard Power port occurs with an outpatient procedure.
◼ An ~inch square hard raised object can be seen and felt just under the skin below the collar. A port is typically placed on the right side of the body.
◼ Most PALS find the internal port to be the most convenient and least painful method for recurring infusion needs.
◼ An ~inch square hard raised object can be seen and felt just under the skin below the collar. A port is typically placed on the right side of the body.
◼ Most PALS find the internal port to be the most convenient and least painful method for recurring infusion needs.
Audio - PALS Perspective: Radicava Infusion