If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
We are not experts or sales reps. We are simply caregivers who believe no one battling ALS should start at ground zero. Instead, they should build on a foundation of learning shared by current and former ALS caregivers and people with ALS. Only someone who battled this disease 24 hours a day 7 days a week can truly understand the daily challenges caregivers and people living with ALS face. This site exists to enable everyone facing ALS to more quickly gain tangible & practical knowledge to overcome daily challenges by providing firsthand, "life learned" insights.
Upcoming ALS Caregiver Workshops
For registration assistance contact your ALS Care Services Coordinator or email register@ALSCaregivers.org
These free workshops are presented by former & current caregivers sharing their insights. There are "Hands-on" opportunities to experience equipment and practice techniques. Talk with caregivers who experienced some of the challenges you may be facing and receive practical suggestions. Most of all, gain an understanding of the journey ahead and proactive steps you can take.
Fri Oct 18, 2024 12:30pm-4:30pm cst
Overcoming Breathing & Swallowing Challenges
Fenton, MO
Tue Jun 17, 2025 7pm-9pm cst
Key Documents & Handy Resources; Making A Difference
Online (Zoom)
All ALS Caregiver Books and Workshop Companion Videos
ALS Caregivers compiled e-books sharing their insights related to overcoming the daily challenges of living with ALS. The e-books below are a quick read that also include pictures, links, "how to" videos and caregiver audio clips on equipment and techniques to overcome the challenges. These are a wonderful resource for everyone facing down this disease. We invite you to click on the books below and experience it for yourself.
To keep updated on new workshops and when additional insights are added to the knowledge hub like & follow us on www.facebook.com/ALSCaregivers.org
For caregivers of those recently diagnosed with ALS. A letter from us, to you, as your journey begins.
Just Diagnosed
Insights on assistive nutrition alternatives and addressing excessive drooling. Tips on meal-time and drinking techniques.
Swallowing
Insights on tools for overcoming voice weakness, and communication applications. Tips on caregiver alerts, voice banking and message banking.
Speaking
Many people diagnosed with ALS first notice issues with speech or swallowing. This is called bulbar onset. This provides Insights on what bulbar onset ALS is and tips for handling common symptoms.
Bulbar Onset
Insights on tools to assess breathing and assist with making breathing easier. Tips on handling breathing difficulties.
Breathing
Insights on tools to compensate for arm, hand, and neck weakness. Tips on daily dressing, personal hygiene, drinking / eating techniques, hands free mobile phone and computer use.
Upper Body
Insights on assistive devices for walking, standing from a seated position with weak legs, and getting up from the floor. Tips on getting out of vehicles, and techniques for leg swelling, cramping and spasms.
Lower Body
Insights on available equipment to make bathing, personal hygiene and dressing easier. Tips to assist with getting into the shower and with bathing.
Bathing
Insights on equipment to make toileting easier. Tips to assist with transfers to the toilet and toileting.
Toileting
Insights on assessments associated with unclear thinking or inappropriate emotions and tips on handling these situations.
Not Acting Like Themselves
Insights on what to expect when receiving medicine through an IV and infusion options. Tips for infusing and bathing with PICC lines and ports.
Infusions
Insights on stretches and exercises that enable retention of functionality. Tips for addressing muscle spasms and cramps and a variety of therapy options.
Keep Your Body Moving
Insights on scooters, wheelchairs, wheelchair accessories and accessible vehicles. Tips on assisting with car transfers, navigating wheelchair obstacles and driving with ALS.
Getting Around
Insights on planning for and navigating accessible traveling with planes, trains and boats. Tips for road trips and accessible destination considerations.
Traveling
Insights on big and small changes that can make your home more functional for all stages of the disease progression.
Making Your Home Work For You
Insights on disability forms, legal documents, caregiver logs, and equipment logs. Tips for planning clinic visits, available support, and where to find resources on available ALS studies and trials.