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Overcoming Mobility 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 Caregiversfor ALS Caregivers
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Overview
2
Introduction
3
Who We Are
Overcoming Mobility 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.
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
The Purpose of This Book
THIS BOOK INCLUDES:
● Scooters
● Manual Wheelchair
● Wheelchair to Car Transfer
● Electric Wheelchair
● Heavy Duty Power Wheelchair
● Wheelchair & Scooter Cushions
● Navigating Doorways
● Specialty Chairs
● Vans
● Wheelchair Carriers
● Driving With ALS
● Manual Wheelchair
● Wheelchair to Car Transfer
● Electric Wheelchair
● Heavy Duty Power Wheelchair
● Wheelchair & Scooter Cushions
● Navigating Doorways
● Specialty Chairs
● Vans
● Wheelchair Carriers
● Driving With ALS
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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 everyday 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: 11/15/23.
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 everyday 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: 11/15/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
To print the book, select this icon
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 everyday 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: 11/15/23.
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 everyday 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: 11/15/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
4
Scooters
5
Scooter Sources
Why A Scooter?
◼ A mobility scooter (e.g. Drive, Scout compact travel, Transformer auto folding with remote) is a great choice for when a person with ALS still has some leg strength but they fatigue when walking distances. This is very handy on trips to the store, to the park, around the neighborhood or vacation. Scooters reduce falling risks & enable the person with ALS to save energy while remaining independent.
◼ Scooters require a large turning radius making it difficult to operate indoors on in small places.
◼ There are many options for scooters including some that fold or come apart to make it easy to transport in the trunk of the car.
◼ I was able to put my back seat flat then lift the front wheels onto the bumper then push the scooter we had into the back of the car.
◼ Do NOT use insurance to pay for this. Insurance only pays for 1 mobility device. Use insurance to pay for the very expensive power wheelchair.
◼ Check with your local ALS Association they may have a scooter available in the loan closet.
◼ Leverage Google searches and Craigs list. You have a good chance of finding a family that no longer needs their scooter.
◼ Check local churches (even if you are not affiliated) and VFW's. They may have scooters that they will loan to you.
◼ Check with your local ALS Association they may have a scooter available in the loan closet.
◼ Leverage Google searches and Craigs list. You have a good chance of finding a family that no longer needs their scooter.
◼ Check local churches (even if you are not affiliated) and VFW's. They may have scooters that they will loan to you.
Extra Tips
◼ A carry basket in the front is very useful.
◼ A scooter with a rotating seat is very helpful.
◼ Attach broom holders to the front of scooter to hold the canes.
◼ Carry the battery charging cord with you at all times.
◼ You can get a holder for the back of the scooter or wheelchair for a walker.
◼ A scooter with a rotating seat is very helpful.
◼ Attach broom holders to the front of scooter to hold the canes.
◼ Carry the battery charging cord with you at all times.
◼ You can get a holder for the back of the scooter or wheelchair for a walker.
Audio - Caregiver Perspective: Using a scooter
5
Scooter Sources
◼ Do NOT use insurance to pay for this. Insurance only pays for 1 mobility device. Use insurance to pay for the very expensive power wheelchair.
◼ Check with your local ALS Association they may have a scooter available in the loan closet.
◼ Leverage Google searches and Craigs list. You have a good chance of finding a family that no longer needs their scooter.
◼ Check local churches (even if you are not affiliated) and VFW's. They may have scooters that they will loan to you.
◼ Check with your local ALS Association they may have a scooter available in the loan closet.
◼ Leverage Google searches and Craigs list. You have a good chance of finding a family that no longer needs their scooter.
◼ Check local churches (even if you are not affiliated) and VFW's. They may have scooters that they will loan to you.
Extra Tips
◼ A carry basket in the front is very useful.
◼ A scooter with a rotating seat is very helpful.
◼ Attach broom holders to the front of scooter to hold the canes.
◼ Carry the battery charging cord with you at all times.
◼ You can get a holder for the back of the scooter or wheelchair for a walker.
◼ A scooter with a rotating seat is very helpful.
◼ Attach broom holders to the front of scooter to hold the canes.
◼ Carry the battery charging cord with you at all times.
◼ You can get a holder for the back of the scooter or wheelchair for a walker.
Audio - Caregiver Perspective: Hooking canes to the scooter
6
Manual Wheelchair
7
Manual Wheelchair Accessories
Why A Manual Wheelchair?
◼ A manual wheelchair is very handy for when the person with ALS finds the walk is too much for their legs. There are very lightweight transport chairs that can be easily put in the car and the caregiver can pull out when needed.
◼ There are different types of wheelchairs:
◼ There are different types of wheelchairs:
● A standard manual wheelchair has a large back and large back wheels. They are comfortable for sitting in over a longer time period but are much heavier to lift and can be difficult to lift into a car. The pALS can self-propel in this chair.
● A high back reclining manual wheelchair (Bueue, EV Rider, Medline) is larger than a standard manual wheelchair. It provides support for the head and can be reclined.
● A transport wheelchair has small wheels and is lightweight. It is not comfortable to sit in over a long time but can easily be lifted into a car. The PALS can't self-propel in this chair.
● A high back reclining manual wheelchair (Bueue, EV Rider, Medline) is larger than a standard manual wheelchair. It provides support for the head and can be reclined.
● A transport wheelchair has small wheels and is lightweight. It is not comfortable to sit in over a long time but can easily be lifted into a car. The PALS can't self-propel in this chair.
◼ Some wheelchairs provide better neck support than others. You can add a headrest neck support like a padded neck rest cushion to add to a manual wheelchair.
◼Leg rest extenders can be added to prevent the PALS foot from slipping off the footrest.
◼You can also get elevating swing away leg rests enabling a pALS to lift their legs while in a manual wheelchair
◼A wheelchair foot support helps align externally rotating feet and ensure they don’t get caught when going thru doorways and other tight spaces.
◼ A foot & heel support pad can provide relief from pressure and aid in addressing heel sores.
◼ Arm supports can be added providing a greater range of motion for feeding and facial hygiene.
◼Leg rest extenders can be added to prevent the PALS foot from slipping off the footrest.
◼You can also get elevating swing away leg rests enabling a pALS to lift their legs while in a manual wheelchair
◼A wheelchair foot support helps align externally rotating feet and ensure they don’t get caught when going thru doorways and other tight spaces.
◼ A foot & heel support pad can provide relief from pressure and aid in addressing heel sores.
◼ Arm supports can be added providing a greater range of motion for feeding and facial hygiene.