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Making A DifferenceLoading...
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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 Caregiversfor ALS Caregivers
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Overview
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Introduction
Who We Are
Making A Difference
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.
THIS BOOK WILL BENEFIT: Those with a desire to help others facing similar challenges & inform health care members about the practical side of living with the disease. Those people living with ALS who desire to be difference makers
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 9/27/22.
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 9/27/22.
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 9/27/22.
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 9/27/22.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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Share Your Story & Experiences
Share Your Story & Experiences (Continued)
Get Involved
◼ Participate in the ALS Association small groups / support groups.
◼ Be a friend. Connect with others with ALS.
◼ Invite someone with ALS to come to your home and see first-hand how you have set up your home for accessibility or specific equipment you use.
◼ Be a friend. Connect with others with ALS.
◼ Invite someone with ALS to come to your home and see first-hand how you have set up your home for accessibility or specific equipment you use.
Volunteer
◼ Be a “guest” patient at SLU or Wash U PT student training sessions.
◼ Share your story at ALS association events.
◼ Join an ALS association task force.
◼ Become an “ALS Ambassador”.
◼ Work on foundation grant requests
◼ Consider joining advocacy efforts.
◼ Share your story at ALS association events.
◼ Join an ALS association task force.
◼ Become an “ALS Ambassador”.
◼ Work on foundation grant requests
◼ Consider joining advocacy efforts.
Audio - Caregiver Perspective: ALS Ambassador
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Share Your Story & Experiences (Continued)
Video: ALS Ambassador
Video: PALS Perspective
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Share Your Story & Experiences (Continued)
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Share Your Story & Experiences (Continued)
Write
◼ Write articles, blogs, etc.
● Als.org
● Iamals.org
● Patientslikeme.com
● Teamgleason.org
● Alsnewstoday.com
● Alspathways.com
● ALSforums.com
● Iamals.org
● Patientslikeme.com
● Teamgleason.org
● Alsnewstoday.com
● Alspathways.com
● ALSforums.com
◼ Share your learnings (what worked, what didn’t work).
◼ Many companies have foundational grants providing funds for charities. Check with friends and family. You may find their workplace may offer grants. Consider working with them and the ALS association to submit foundation requests to cover an ALS loan closet need
◼ Many companies have foundational grants providing funds for charities. Check with friends and family. You may find their workplace may offer grants. Consider working with them and the ALS association to submit foundation requests to cover an ALS loan closet need
Video: PALS Perspective
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