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Extra Tips
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Safety
◼ Always lock the brakes on a manual chair and turn the power off on the electric wheelchairs before you start lifting someone with the sit to stand or lift.
◼ Try to get the wheelchair as close to the destination as possible to reduce how far you are traveling in the lift or sit to stand
◼ Double check that the straps are securely fastened to the lift or sit to stand before lifting.
◼ Clear the path that the lift and sit to stand will travel before lifting them.
◼ The caregiver should avoid wearing hoodies with draw strings when working with equipment. The draw strings get caught up in the slings.
◼ When moving someone, always lift using a gait belt around their mid-section. Never lift by wrapping arms around the person’s chest and under their armpits.
◼ The gait belt, sit to stand and full body lift are extremely valuable for the PALS & caregiver. However, you may encounter a PALS that is resistant to this equipment because of claustrophobia. The stress and anxiety that the restriction these create can eliminate some equipment as options.
◼ Try to get the wheelchair as close to the destination as possible to reduce how far you are traveling in the lift or sit to stand
◼ Double check that the straps are securely fastened to the lift or sit to stand before lifting.
◼ Clear the path that the lift and sit to stand will travel before lifting them.
◼ The caregiver should avoid wearing hoodies with draw strings when working with equipment. The draw strings get caught up in the slings.
◼ When moving someone, always lift using a gait belt around their mid-section. Never lift by wrapping arms around the person’s chest and under their armpits.
◼ The gait belt, sit to stand and full body lift are extremely valuable for the PALS & caregiver. However, you may encounter a PALS that is resistant to this equipment because of claustrophobia. The stress and anxiety that the restriction these create can eliminate some equipment as options.
◼ PALS need to be hyper aware of where they are spending their energy. If they expend all of their energy early in the day, fatigue will set in. This is a prime time for when falls occur.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the possible need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ The gait belt, sit to stand and full body lift are extremely valuable for the PALS & caregiver. However, you may encounter a PALS that is resistant to this equipment because of claustrophobia. The stress and anxiety that the restriction these create can eliminate some equipment as options.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the possible need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ The gait belt, sit to stand and full body lift are extremely valuable for the PALS & caregiver. However, you may encounter a PALS that is resistant to this equipment because of claustrophobia. The stress and anxiety that the restriction these create can eliminate some equipment as options.
Hooking a Ventilator to Equipment
◼ We used velcro straps and carabiners to create locations on the lift and sit to stand to quickly hook the ventilator to. This allowed the ventilator to travel while the caregiver used both hands to move the equipment.
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Special Considerations
◼ PALS need to be hyper aware of where they are spending their energy. If they expend all of their energy early in the day, fatigue will set in. This is a prime time for when falls occur.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the possible need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ The gait belt, sit to stand and full body lift are extremely valuable for the PALS & caregiver. However, you may encounter a PALS that is resistant to this equipment because of claustrophobia. The stress and anxiety that the restriction these create can eliminate some equipment as options.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the possible need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ The gait belt, sit to stand and full body lift are extremely valuable for the PALS & caregiver. However, you may encounter a PALS that is resistant to this equipment because of claustrophobia. The stress and anxiety that the restriction these create can eliminate some equipment as options.
Audio - Caregiver perspective: PALS with claustrophobia
Hooking a Ventilator to Equipment
◼ We used velcro straps and carabiners to create locations on the lift and sit to stand to quickly hook the ventilator to. This allowed the ventilator to travel while the caregiver used both hands to move the equipment.
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Extra Tips (Continued)
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Generators
Keeping The Phone Close
◼ When the person with ALS is still walking but has leg weakness, falls tend to happen. It seemed like either the phone went flying during the fall or just wasn’t close by to get help. The watch is always on their wrist.
◼ A watch that with direct mobile service (not just through the Apple or Android phone) is a handy. You don’t have to lift & hold the phone to call. When you fall, the phone may going flying. With the watch on your wrist and it is easy to get help.
◼ Adding a lanyard / neck strap (e.g. Hitch, SS Phone lanyard) to a phone (and TV remote) or armband is very helpful in keeping the phone within reach and eliminates the concern of it getting dropped. ◼ The gear keeper smartphone retractor is another good alternative to wearing a lanyard around the neck.
◼ A watch that with direct mobile service (not just through the Apple or Android phone) is a handy. You don’t have to lift & hold the phone to call. When you fall, the phone may going flying. With the watch on your wrist and it is easy to get help.
◼ Adding a lanyard / neck strap (e.g. Hitch, SS Phone lanyard) to a phone (and TV remote) or armband is very helpful in keeping the phone within reach and eliminates the concern of it getting dropped. ◼ The gear keeper smartphone retractor is another good alternative to wearing a lanyard around the neck.
◼ As the disease progresses, the person with ALS will become heavily dependent on equipment that requires electricity (power wheelchairs, sit to stand, lift chairs, hospital beds, lift, etc.). While some equipment may have batteries to sustain power, it is a VERY good idea to have backup power capability.
◼ If you don’t want to invest in a home generator, consider something smaller that can be used to power a few essential items.
◼ If you don’t want to invest in a home generator, consider something smaller that can be used to power a few essential items.
The Benefits Of Medical Alert Systems
◼ There are a variety of mobile medical alert systems (ADT Medical Alert, Alert1, lively, Medical Alert, Medical Guardian, Mobile Help, OneCallAlert, or Unali Wear).
◼ It is important to clarify the range of the alert system outside of the home.
◼ It is important to clarify the range of the alert system outside of the home.
◼ The Making Your Home Work For You book in this E-library provides caregiver insights into making your home (like the bathroom) more accessible. Click on the link or QR code below to go directly to that book in the e-library.
E-Library Book
E-Library Book
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Generators
◼ As the disease progresses, the person with ALS will become heavily dependent on equipment that requires electricity (power wheelchairs, sit to stand, lift chairs, hospital beds, lift, etc.). While some equipment may have batteries to sustain power, it is a VERY good idea to have backup power capability.
◼ If you don’t want to invest in a home generator, consider something smaller that can be used to power a few essential items.
◼ If you don’t want to invest in a home generator, consider something smaller that can be used to power a few essential items.
◼ The Making Your Home Work For You book in this E-library provides caregiver insights into making your home (like the bathroom) more accessible. Click on the link or QR code below to go directly to that book in the e-library.
E-Library Book
E-Library Book
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Available Resources
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Free Online Library of Booklets by Caregivers for Caregivers
These pages are filled with guidance on overcoming many challenges of living with ALS and information on upcoming workshops. To access this helpful resource:
These pages are filled with guidance on overcoming many challenges of living with ALS and information on upcoming workshops. To access this helpful resource:
Free Online Library of Booklets by Caregivers for Caregivers
◼ ALSCaregivers.org
◼ Or Scan this QR code
◼ Or Scan this QR code
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ALSCaregivers.org
Free Online Library of Booklets by Caregivers for Caregivers
Video: Navigating the E-Library
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If you have learnings to share or would like to join our efforts, please reach out: learnings@ALSCaregivers.org