Who We Are: 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.
If you have learnings to share or would like to join our efforts, email info@ALSCaregivers.org
ALSCaregivers.org
Upcoming Workshops
For registration assistance, email info@ALSCaregivers.org
Our free workshops are led by former and current caregivers who share their experiences. You can talk with caregivers who faced similar challenges and get practical advice. Virtual workshops let you hear caregivers share insights and tips for overcoming challenges. On-site or in-person workshops let you see equipment in action and learn techniques from caregivers. Everyone gets hands-on practice with the equipment. Most importantly, these workshops help you understand what lies ahead and the steps to prepare.
Click "Register Now"
Fri April 17, 2026 Noon-1:30pm cst
Key Documents & Handy Resources: Making A Difference by ALSCaregivers
Online (Zoom)
Tue April 28, 2026 2-3:30pm ET
Understanding the FTD of an FTD/ALS Diagnosis by ALS Association
Online
Tue May 12, Wed 13, Thur 14, 2026 2-3:30pm ET
Connected Through the ALS Journey: Support, Resources and Community by ALS Association
Online
Fri May 15, 2026 12:30pm-4:30pm cst
Overcoming Toileting Challenges by ALSCaregivers
Fenton Mo (In-Person Only)
Fri Jun 19, 2026 Noon-1:30pm cst
Overcoming Relationship Challenges by ALSCaregivers
Online (Zoom)
Fri Jul 17, 2026 Noon-1:30pm cst
Overcoming Bulbar Onset Challenges: Breathing, Speaking, Swallowing by ALSCaregivers
Online (Zoom)
Fri Aug 21, 2026 Noon-1:30pm cst
Overcoming Lower Body Weakness Challenges by ALSCaregivers
Online (Zoom)
Fri Oct 16, 2026 12:30pm-4:30pm cst
Overcoming Mobility Challenges by ALSCaregivers
Fenton Mo (In-Person Only)
Caregiver Library
ALS caregivers have put together e-books that share their tips for handling the daily challenges of living with ALS. These e-books are easy to read and include pictures, helpful links, how-to videos, and audio clips from caregivers about equipment and techniques. They are a great resource for anyone dealing with this disease. Feel free to click on the books below to explore them yourself.
If you are caring for someone recently diagnosed with ALS, this is intended for you. We are here to support you as you begin this journey.
Just Diagnosed
This document provides nutrition alternatives, strategies to manage excessive drooling, and practical tips to support eating and drinking during meals.
Swallowing
Discover effective tools for managing voice weakness and enhancing communication. Access practical guidance on caregiver alerts, voice banking, and message banking.
Speaking
Many people with ALS first notice problems with speech or swallowing. This is known as bulbar onset. Here are some insights about bulbar onset ALS and tips for managing common symptoms.
Bulbar Onset
This guide offers tools to assess your breathing, ways to make breathing more comfortable, and practical tips for handling breathing problems.
Breathing
Find helpful tools for managing arm, hand, and neck weakness. Get practical advice on dressing, personal hygiene, eating and drinking, and using your phone or computer without your hands.
Upper Body
Find helpful advice on using assistive devices for walking, standing up from a chair if your legs are weak, and getting up from the floor. You’ll also get tips for getting out of cars and ways to manage leg swelling, cramps, and spasms.
Lower Body
Learn about tools that can make bathing, personal care, and getting dressed simpler. Find helpful tips for getting in and out of the shower and making bathing easier.
Bathing
Here are some suggestions for equipment that can make using the toilet easier, along with tips to help with moving safely to and from the toilet.
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 how to retain close connections with spouses/partners, children, relatives, co-workers and health care providers.
Relationships
Insights on equipment and best practices to keep the caregiver mentally, physically, and emotionally healthy. Tips on leveraging others for assistance and making the most of together time.
Taking Care of the Caregiver
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.
Key Documents & Handy Resources
Insights on participating in ALS Studies, becoming an ALS ambassador or assisting with advocacy efforts. Tips and forums for sharing your story and experiences helping others facing similar challenges.
Making A Difference
By Topic
If you are short on time, you can use the links below to jump straight to common topics in the book and workshop videos. You will also find a link to a sample Amazon lists with equipment that can help you tackle this challenge.
Breathing Diagnostics
Bulbar Basics
Disabilty Forms
Do Random Acts Of Kindness
Fund Raising
Getting Started
Help / Support
Home Renovations: Assistance
Hospitalizations
Journey's End: Nearing
Journey's End
Knowlege Is Power
Log: For Key Contacts
Losing Your Voice
Making The Most Of Together Time
Not Acting Like Themselves
Post Funeral Considerations
Range of Motion: Therapy
Range of Motion: Workouts
Relationships: Children
Relationships: Co-Workers
Relationships: Importance
Share Your Story / Experience
Swallowing Diagnostics
The Right To Choose
Where To Begin
Contact Us