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Making Your Home Work For You
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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
Who We Are
Making Your Home, Work For You
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 who are considering changes that may be needed to their home to make it functional for all aspects of the disease progression or who are currently struggling with an aspect of their home setup
The Purpose of This Book
THIS BOOK INCLUDES:
● Doorways
● Stairs
● Bathroom
● Kitchen / Dining Room
● Bedroom
● Living Room
● Lift Systems
● Home Automation
● Assistance
● Extra Tips
● Stairs
● Bathroom
● Kitchen / Dining Room
● Bedroom
● Living Room
● Lift Systems
● Home Automation
● Assistance
● 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 4/8/24.
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 4/8/24.
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 4/8/24.
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 4/8/24.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
4
Doorways
5
Hinges & Handles
◼ Offset Hinges can add inches to doorways. Every inch counts! At least 34 inches is needed.
If possible, expand doorways to
at least 36". Every inch matters.
◼ Consider barn doors or if possible,
consider removing the door completely.
◼ Lever type handles make it easier to open and close doors. Easy to open lever handles can be purchased that will attach to a standard door knob (e.g. great grips 2 lever door knob gripper or door knob extender).
◼ Hang door closers next to the door making it easier for someone in a wheelchair to close the door behind them. (e.g. E-Z Pull Door Closer)
Or, tie a rope around the handle with
a tennis ball on the end.
If possible, expand doorways to
at least 36". Every inch matters.
◼ Consider barn doors or if possible,
consider removing the door completely.
◼ Lever type handles make it easier to open and close doors. Easy to open lever handles can be purchased that will attach to a standard door knob (e.g. great grips 2 lever door knob gripper or door knob extender).
◼ Hang door closers next to the door making it easier for someone in a wheelchair to close the door behind them. (e.g. E-Z Pull Door Closer)
Or, tie a rope around the handle with
a tennis ball on the end.
Audio - Barn doors
◼ Switch to smart door lock with key pad that can be controlled via iphone voice, a key pad lock, or an automatic door opener.
◼ Automatic openers can be added to existing doors and a remote attached to a wheelchair or walker.
◼ Automatic openers can be added to existing doors and a remote attached to a wheelchair or walker.
5
Thresholds
◼ Threshold ramps are used to overcome those little step ups on doorways.
◼ Threshold ramps can be purchased or hand made.
◼ Threshold ramps can be purchased or hand made.
Video: Thresholds
Video: Powerchair Going Through Doorway
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6
Stairs
7
Railings & Grab Bars
◼ Hand Rails for stairs (in the home and outside of the home) are very important to help the pALS keep their balance. Railings on both sides are best.
◼ A grab bar next to the door is also very helpful.
◼ A grab bar next to the door is also very helpful.
Video: PALS On Stairs
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