Loading...
Overcoming Upper Body Weakness
Loading...
Loading...
Loading...
Practical Knowledge Sharing for Overcoming the Daily Challenges of Living with ALS
Loading...
By St. Louis ALS Association Caregivers for ALS Caregivers
Loading...
Overview
2
Introduction
3
Who We Are
Upper 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.
THIS BOOK WILL BENEFIT: Those having weakness in 1 or more arms, difficulty raising arms for any length of time, dropping things, loss of grip strength, fingers curling or freezing in place
The Purpose of This Book
THIS BOOK INCLUDES:
● Neck Weakness
● Arm Weakness
● Hand Weakness
● Drinking and Eating
● Mobile Phone Use
● Computer Use
● Extra Tips
● Drooling
● Arm Weakness
● Hand Weakness
● Drinking and Eating
● Mobile Phone Use
● Computer Use
● Extra Tips
● Drooling
Press the 'Home' button on any page to come back here
To view the video in full-size, click on the video and select this icon. Allow 30 seconds for the video to load
To print the book, select this icon
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 1/29/24.
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 1/29/24.
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 1/29/24.
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 1/29/24.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
4
Neck Weakness
5
Equipment
Equipment - Neck Support Options (Continued)
◼ A brace is a very effective at providing neck support, keeping the chin from resting on the chest, & the head from falling forward
◼ There are many neck support options available:
◼ There are many neck support options available:
● A headmaster collar is effective at holding the head up but also enables the PALS to move their head side to side
● A BAC neck brace is very lightweight and the most visually “subtle” It provides “support” to hold the chin up but not side to side support.
● A soft foam neck brace provides minimal support. PALS complain of their neck getting hot and itchy. It also tends to absorb drool. Not the best option.
● A BAC neck brace is very lightweight and the most visually “subtle” It provides “support” to hold the chin up but not side to side support.
● A soft foam neck brace provides minimal support. PALS complain of their neck getting hot and itchy. It also tends to absorb drool. Not the best option.
● An Aspen collar provides full support / immobilization of the neck. The PALS will not be able to move their neck in any direction.
● A Twist Bendable or Travel Neck Pillow provides minimal support
● A Savant Head Rest attaches to a wheelchair head rest providing head control. There is a band that goes over the PALS forehead to keep the head from moving forward.
● A Twist Bendable or Travel Neck Pillow provides minimal support
● A Savant Head Rest attaches to a wheelchair head rest providing head control. There is a band that goes over the PALS forehead to keep the head from moving forward.
5
Equipment - Neck Support Options (Continued)
● An Aspen collar provides full support / immobilization of the neck. The PALS will not be able to move their neck in any direction.
● A Twist Bendable or Travel Neck Pillow provides minimal support
● A Savant Head Rest attaches to a wheelchair head rest providing head control. There is a band that goes over the PALS forehead to keep the head from moving forward.
● A Twist Bendable or Travel Neck Pillow provides minimal support
● A Savant Head Rest attaches to a wheelchair head rest providing head control. There is a band that goes over the PALS forehead to keep the head from moving forward.
6
Neck Weakness (Continued)
Therapy
Equipment (Continued)
7
◼ Even if you are buying a neck brace yourself off of the internet, have PT measure your neck so you get the proper size neck support.
◼ Have PT or the wheelchair vendor recheck the head rest on the chair to see if adjustments are needed or a different headrest is needed to provide better head support.
◼We had 2 collars, 1 to wear in the shower & 1 for every day.
◼ The chin piece on the collars gets really dirty. Find someone to sew chin covers instead of purchasing replacement chin pads.
◼ For a pALS that couldn't stand a collar on their neck, a caregiver tethered the adjustable strap of the pALS baseball cap to the wheelchair headrest with an adjustable velcro strap.
◼ Stay informed on efforts underway on a robotic neck brace to improve functions for people with ALS.
◼ Have PT or the wheelchair vendor recheck the head rest on the chair to see if adjustments are needed or a different headrest is needed to provide better head support.
◼We had 2 collars, 1 to wear in the shower & 1 for every day.
◼ The chin piece on the collars gets really dirty. Find someone to sew chin covers instead of purchasing replacement chin pads.
◼ For a pALS that couldn't stand a collar on their neck, a caregiver tethered the adjustable strap of the pALS baseball cap to the wheelchair headrest with an adjustable velcro strap.
◼ Stay informed on efforts underway on a robotic neck brace to improve functions for people with ALS.
◼ Massage (manual or machine) is the best way to relieve pain related to muscle knots, cramping, and stiffening. Lengthy hand massage can be difficult for the caregiver. We had success using an electric massager (e.g. purewave pada cordless handheld massage).
◼ Moist Heat wraps, microwavable neck wraps, or heating pads are helpful in providing relief. Be careful not to “burn” the skin.
◼ Leverage PT & OT to train the caregiver where and how to properly massage. PT and OT can also provide more intensive massage techniques & unique therapies (Like red light therapy) to provide relieve and help regain range of motion.
◼ See Keep Your Body Moving (Separate Book)
◼ Moist Heat wraps, microwavable neck wraps, or heating pads are helpful in providing relief. Be careful not to “burn” the skin.
◼ Leverage PT & OT to train the caregiver where and how to properly massage. PT and OT can also provide more intensive massage techniques & unique therapies (Like red light therapy) to provide relieve and help regain range of motion.
◼ See Keep Your Body Moving (Separate Book)
Audio - Caregiver Perspective: Neck support