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.

Thur Nov 21st, 2024 6pm est - 8pm est, 5pm-7pm cst

Taking Care of the Caregiver

Online (Zoom)

Tue Jan 21, 2025 7pm-9pm cst

Overcoming Speaking Challenges

Online (Zoom)

Tue Feb 18, 2025 7pm-9pm cst

Making Your Home Work For You

Online (Zoom)

Fri Mar 21, 2025 12:30pm-4:30pm cst

Overcoming Lower Body Weakness Challenges

Fenton, MO (In-Person)

Tue Apr 15, 2025 7pm-9pm cst

Overcoming Traveling Challenges

Online (Zoom)

Fri May 16, 2025 12:30pm-4:30pm cst

Overcoming Bathing Challenges

Fenton, MO (In-Person)

Tue Jun 17, 2025 7pm-9pm cst

Key Documents & Handy Resources; Making A Difference

Online (Zoom)

Tue Jul 15, 2025 7pm-9pm cst

Overcoming Upper Body Challenges

Online (Zoom)

Fri Aug 15, 20254 12:30pm-4:30pm cst

Overcoming Mobility Challenges

Fenton, MO (In-Person)

Fri Oct 17, 2025 12:30pm-4:30pm cst

Overcoming Toileting Challenges

Fenton Mo (In-Person)

Tue Nov 18, 2025 7pm-9pm cst

Taking Care of the Caregiver

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.

Key Documents & Handy Resources

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 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

Journey's End

ALSCaregivers Knowledge By Topic

Bathing With Trach, Port, PICC, or Peg

Bowel Training

Breathing Diagnostics

Bulbar Basics

Disabilty Forms

Do Random Acts Of Kindness

Documents: Health Information

Don't Fight The Battle Alone

Full-Time Breathing Assistance

Fund Raising

Getting In and Out of Vehicles

Getting Started

Help / Support

Home Renovations: Assistance

Home Renovations: Bathroom

Home Renovations: Bedroom

Home Renovations: Doorways

Home Renovations: Home Automation

Home Renovations: Kitchen / Dining

Home Renovations: Lift System

Home Renovations: Living Room

Home Renovations: Stairs

Hospitalizations

Journey's End: Pre-planning

Journey's End: Nearing

Journey's End

Keeping The Caregiver Healthy

Keyboard & Mouse Alternatives

Knowlege Is Power

Log: For Caregivers & Helpers

Log: For Key Contacts

Losing Your Voice

Making The Most Of Together Time

Muscle Stiffening / Spasms / Cramping

Not Acting Like Themselves

Occasional Breathing Assistance

Post Funeral Considerations

Range of Motion: Head & Neck

Range of Motion: Arms & Hands

Range of Motion: Legs & Feet

Range of Motion: Therapy

Range of Motion: Workouts

Relationships: Children

Relationships: Co-Workers

Relationships: Health Care Providers

Relationships: Importance

Relationships: Relatives / Friends

Relationships: Spouse / Partner

Repositioning In Bed

Share Your Story / Experience

Speaking and Listening Techniques

Suctioning & Abdominal Thrust

Swallowing Diagnostics

The Right To Choose

Toileting When Traveling

Toileting With Lower Leg Weakness

Traveling: Portable Equipment

Traveling: Transportation Options

Use Of A Full Body Lift (Hoyer)

Walking With Assistive Devices

Wheelchairs: Heavy Duty Power

Wheelchair And Scooter Cushions

Wheelchair Carriers

Wheelchairs: Specialty

Where To Begin

To keep updated on new workshops or addition insights added to these materials like & follow us on www.facebook.com/ALSCaregivers.org

If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org