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Overcoming Traveling 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 Caregivers for ALS Caregivers
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Overview
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Introduction
Who We Are
Overcoming Traveling 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 who would like to continue to get "out and about" daily or who are curious about how they continue traveling
The Purpose of This Book
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 4/20/24.
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 4/20/24.
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 4/20/24.
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 4/20/24.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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Transportation
Transportation
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Wheelchair Vans
Standard Vehicles
◼ If you are renting a vehicle for the trip, generally the easiest vehicles to get in and out of are the Toyota Highlander, Kia Soul, Volkswagen Taos, Subaru Forester, Ford Edge, Hyundai Santa Fe
◼ Positioning the pALS in the front seat will make it easier for them to get in and out of the vehicle.
◼ When traveling in a standard vehicle, you want to bring some simple tools to make getting in and out of the care less fatiguing for the pALS.
◼ Positioning the pALS in the front seat will make it easier for them to get in and out of the vehicle.
◼ When traveling in a standard vehicle, you want to bring some simple tools to make getting in and out of the care less fatiguing for the pALS.
◼ If you don’t have a van, consider renting a wheelchair van or a vehicle with a turny evo swivel seat. Generally, any mobility company that outfits and sells vans will likely provide rental services also. Two places in St Louis include:
● The closer the pALS can get their bottom to the seat belt clicker the easier it will be to get their legs into the car. Placing a garbage bag or an easy slide sheet onto the seat makes it easier for the pALS to reposition.
● A car cane assist handle provides a convenient handle the pALS can use to push up when getting out of the car.
● A Gate belt can be placed around a pALS giving the caregiver something to hold onto when assisting or exiting the vehicle.
● A portable folding step stool makes it easier if a pALS must step up into a vehicle.
● A car cane assist handle provides a convenient handle the pALS can use to push up when getting out of the car.
● A Gate belt can be placed around a pALS giving the caregiver something to hold onto when assisting or exiting the vehicle.
● A portable folding step stool makes it easier if a pALS must step up into a vehicle.
◼ Consider renting a wheelchair access van for pick up at the airport. United Access offers this service in St Louis and other locations.
◼ The National Mobility Equipment Dealers Association may be helpful when searching for a location to rent a van.
◼ Side entry vans are more practical for road trips than rear entry vans.
◼ Ask for QStraint straps for securing the wheelchair as they are faster and more convenient to use.
◼ Ask for a van with an inverter that provides an AC outlet so you can "plug in" the powerchair, ventilator etc while you are driving and not run down the battery.
◼ The National Mobility Equipment Dealers Association may be helpful when searching for a location to rent a van.
◼ Side entry vans are more practical for road trips than rear entry vans.
◼ Ask for QStraint straps for securing the wheelchair as they are faster and more convenient to use.
◼ Ask for a van with an inverter that provides an AC outlet so you can "plug in" the powerchair, ventilator etc while you are driving and not run down the battery.
5
Wheelchair Vans
◼ If you don’t have a van, consider renting a wheelchair van or a vehicle with a turny evo swivel seat. Generally, any mobility company that outfits and sells vans will likely provide rental services also. Two places in St Louis include:
◼ Consider renting a wheelchair access van for pick up at the airport. United Access offers this service in St Louis and other locations.
◼ The National Mobility Equipment Dealers Association may be helpful when searching for a location to rent a van.
◼ Side entry vans are more practical for road trips than rear entry vans.
◼ Ask for QStraint straps for securing the wheelchair as they are faster and more convenient to use.
◼ Ask for a van with an inverter that provides an AC outlet so you can "plug in" the powerchair, ventilator etc while you are driving and not run down the battery.
◼ The National Mobility Equipment Dealers Association may be helpful when searching for a location to rent a van.
◼ Side entry vans are more practical for road trips than rear entry vans.
◼ Ask for QStraint straps for securing the wheelchair as they are faster and more convenient to use.
◼ Ask for a van with an inverter that provides an AC outlet so you can "plug in" the powerchair, ventilator etc while you are driving and not run down the battery.
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Transportation
Transportation (Continued)
7
Recreational Vehicles (Continued)
Wheelchair Vans (Continued)
◼ Even if the pALS doesn't need to use it all of the time, consider getting a handicap placard from your local DMV before the trip so you can have it with you if you need it.
Recreational Vehicles
◼ Consider a wheelchair accessible RV rental. RV rental sites like Outdoorsy allow you to rent RVs directly from owners. Use the keyword search box under the more filters section to use terms like wheelchair. How
to Find Wheelchair Accessible RV Rentals | Outdoorsy.com
◼ There are tie downs to secure the wheelchair while driving.
◼ Most wheelchair accessible RVs include a power lift to get into the RV. They also have wider doorways to accommodate the wider wheelchair.
◼ They have wider more open floor plans to allow for maneuverability.
◼ Most have a roll-in shower usually positioned next to the toilet.
◼ 2 major manufacturers of accessible RVs are Winnebago and Newmar.
to Find Wheelchair Accessible RV Rentals | Outdoorsy.com
◼ There are tie downs to secure the wheelchair while driving.
◼ Most wheelchair accessible RVs include a power lift to get into the RV. They also have wider doorways to accommodate the wider wheelchair.
◼ They have wider more open floor plans to allow for maneuverability.
◼ Most have a roll-in shower usually positioned next to the toilet.
◼ 2 major manufacturers of accessible RVs are Winnebago and Newmar.
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