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OvercomingLower Body Weakness
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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
Overcoming Lower Body Weakness
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 weakness in 1 or more legs, foot drop, knees hyper extending or buckling, tripping falling / loss of balance, unsteady when walking
THIS BOOK INCLUDES:
● Walking With Assistive Devices
● Sitting to Standing
● Getting Up From The Toilet
● Getting In & Out Of Bed
● Repositioning In Bed
● Getting Up From The Floor
● Getting In/ Out Of Vehicles
● Muscle Stiffening/Spasms/Cramping
● Leg Swelling
● Clothing
● Use Of A Sit To Stand
● Use Of A Full Body Lift (Hoyer)
● Extra Tip
● Sitting to Standing
● Getting Up From The Toilet
● Getting In & Out Of Bed
● Repositioning In Bed
● Getting Up From The Floor
● Getting In/ Out Of Vehicles
● Muscle Stiffening/Spasms/Cramping
● Leg Swelling
● Clothing
● Use Of A Sit To Stand
● Use Of A Full Body Lift (Hoyer)
● Extra Tip
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. Published: 2/23/24.
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. Published: 2/23/24.
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. Published: 2/23/24.
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. Published: 2/23/24.
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4
5
Walking With Assistive Devices
Emotional Readiness: The Truth
Emotional Readiness: The Challenges
◼ Many pALS delay using walking assistive device even with the increased frequency of falls and difficulty standing. The reason for this delay is often because it is a milestone event in their mind. To a certain extent it is perceived as weakness / "giving in" or admitting defeat to the disability.
◼ Some pALS are still wrapping their heads around their ALS diagnosis and haven't been sharing publicly their diagnosis. By leveraging assistive devices, it seems to be an invitation for people to boldly ask them questions that the pALS isn't prepared to discuss.
◼ Some pALS will remain home and be seen using the device because they can't handle the stares, whispers, bizarre comments or generally being treated "differently".
◼ Some pALS believe usage of assistive devices will cause them to decline faster and become more dependent on them. They believe by using the device, they will lose the ability (and choice) to walk without it. So, they put off leveraging assistive devices for as long as possible.
◼ For many pALS, use of mobility aids is associated with embarrassment, sadness and depression. They cringe when photos are taken remarking, "This is not how I want to be remembered".
◼ Some pALS are still wrapping their heads around their ALS diagnosis and haven't been sharing publicly their diagnosis. By leveraging assistive devices, it seems to be an invitation for people to boldly ask them questions that the pALS isn't prepared to discuss.
◼ Some pALS will remain home and be seen using the device because they can't handle the stares, whispers, bizarre comments or generally being treated "differently".
◼ Some pALS believe usage of assistive devices will cause them to decline faster and become more dependent on them. They believe by using the device, they will lose the ability (and choice) to walk without it. So, they put off leveraging assistive devices for as long as possible.
◼ For many pALS, use of mobility aids is associated with embarrassment, sadness and depression. They cringe when photos are taken remarking, "This is not how I want to be remembered".
Audio - Caregiver perspective: The Onlookers
◼ Using assistive devices enables you to "live your best life".
◼ Using assistive devices does not create dependence, rather it enables you to retain independence longer. It allows you to safely keep your body moving and retain range of motion.
◼ So, which is truly more embrassing .. all the falls (or near falls) you have had in public or having someone see you using equipment that can keep you from falling?
◼ Using equipment doesn't highlight your weakness it adds to your strength. They represent a fighter. These devices represent independence, freedom, and security. Welcome them like an old friend each day. Each time you turn to them, they support you through your most difficult challenges.
◼ Yep, the sideways glances, the giggling, and being treated "differently" hurts. Don't let their reactions force you to stay at home or take unnecessary risk by avoiding equipment use. As a pALS, this equipment helps you do what you want/need to do. So, keep on rolling or strolling with pride. Screw everyone else! You don't owe them an explanation.
◼ Get whatever devices you need and use them proudly. Tell the "whisperers" to shove off, because you know the truth. Let this equipment be your super weapon rather than an anchor weighing you down.
◼ People will remember your courage, strength, humor, wit, and incredible resilience... Not the equipment.
◼ Using assistive devices does not create dependence, rather it enables you to retain independence longer. It allows you to safely keep your body moving and retain range of motion.
◼ So, which is truly more embrassing .. all the falls (or near falls) you have had in public or having someone see you using equipment that can keep you from falling?
◼ Using equipment doesn't highlight your weakness it adds to your strength. They represent a fighter. These devices represent independence, freedom, and security. Welcome them like an old friend each day. Each time you turn to them, they support you through your most difficult challenges.
◼ Yep, the sideways glances, the giggling, and being treated "differently" hurts. Don't let their reactions force you to stay at home or take unnecessary risk by avoiding equipment use. As a pALS, this equipment helps you do what you want/need to do. So, keep on rolling or strolling with pride. Screw everyone else! You don't owe them an explanation.
◼ Get whatever devices you need and use them proudly. Tell the "whisperers" to shove off, because you know the truth. Let this equipment be your super weapon rather than an anchor weighing you down.
◼ People will remember your courage, strength, humor, wit, and incredible resilience... Not the equipment.
5
Emotional Readiness: The Truth
◼ Using assistive devices enables you to "live your best life".
◼ Using assistive devices does not create dependence, rather it enables you to retain independence longer. It allows you to safely keep your body moving and retain range of motion.
◼ So, which is truly more embrassing .. all the falls (or near falls) you have had in public or having someone see you using equipment that can keep you from falling?
◼ Using equipment doesn't highlight your weakness it adds to your strength. They represent a fighter. These devices represent independence, freedom, and security. Welcome them like an old friend each day. Each time you turn to them, they support you through your most difficult challenges.
◼ Yep, the sideways glances, the giggling, and being treated "differently" hurts. Don't let their reactions force you to stay at home or take unnecessary risk by avoiding equipment use. As a pALS, this equipment helps you do what you want/need to do. So, keep on rolling or strolling with pride. Screw everyone else! You don't owe them an explanation.
◼ Get whatever devices you need and use them proudly. Tell the "whisperers" to shove off, because you know the truth. Let this equipment be your super weapon rather than an anchor weighing you down.
◼ People will remember your courage, strength, humor, wit, and incredible resilience... Not the equipment.
◼ Using assistive devices does not create dependence, rather it enables you to retain independence longer. It allows you to safely keep your body moving and retain range of motion.
◼ So, which is truly more embrassing .. all the falls (or near falls) you have had in public or having someone see you using equipment that can keep you from falling?
◼ Using equipment doesn't highlight your weakness it adds to your strength. They represent a fighter. These devices represent independence, freedom, and security. Welcome them like an old friend each day. Each time you turn to them, they support you through your most difficult challenges.
◼ Yep, the sideways glances, the giggling, and being treated "differently" hurts. Don't let their reactions force you to stay at home or take unnecessary risk by avoiding equipment use. As a pALS, this equipment helps you do what you want/need to do. So, keep on rolling or strolling with pride. Screw everyone else! You don't owe them an explanation.
◼ Get whatever devices you need and use them proudly. Tell the "whisperers" to shove off, because you know the truth. Let this equipment be your super weapon rather than an anchor weighing you down.
◼ People will remember your courage, strength, humor, wit, and incredible resilience... Not the equipment.
6
Walking With Assistive Devices (Continued)
7
For Unsteadiness (Continued)
For Unsteadiness
◼ There are a wide variety of canes to provide extra stability when you walk.
● Single point canes - Lightest. Proper height is when the pALS has a slight elbow bend just below the hip. The cane should be in the hand opposite the weak leg. Take a step with the weak leg, the cane should come out at the same time. Rest the hand with the cane on the hip for extra support. Going up steps, the good leg goes up first. Going down steps, the bad leg goes first.
● Multiple Point canes (quad canes) - Provide the greatest support for people with poor balance. A normal or a large base is available. They can stand on their own but they are heavier. A Strongarm version includes a forearm cradle.
● Hurrycane - Handy because it can stand up by itself, collapsible, and still strong. These are available with standing help handles also.
● Forearm / elbow crutches - Aids in transferring the body weight from the legs to the upper body. The forearm cuff reduces pressure on the wrist and helps maintain control. Since this requires alot of upper body strength and coordination, these aren't typically used by pALS.
● Multiple Point canes (quad canes) - Provide the greatest support for people with poor balance. A normal or a large base is available. They can stand on their own but they are heavier. A Strongarm version includes a forearm cradle.
● Hurrycane - Handy because it can stand up by itself, collapsible, and still strong. These are available with standing help handles also.
● Forearm / elbow crutches - Aids in transferring the body weight from the legs to the upper body. The forearm cuff reduces pressure on the wrist and helps maintain control. Since this requires alot of upper body strength and coordination, these aren't typically used by pALS.
