ALSCaregivers.org: “We’ve Been There — Let Us Help”

The journey that ALS brings us on is not one that we expected or were remotely prepared for. As caregivers for people with ALS, we quickly come to realize that the only constant is change, and we find ourselves having to improvise and adapt to this complex health crisis. While there is an ocean of information available, it is not quickly or easily accessed and consumed.

Once we think we have mastered the challenges, we are too soon faced with a new set of difficulties and start the learning all over again.

But, what if we could shorten the learning curve? What if there was a way to tap into practical insights from other caregivers who have fought ALS 24 hours a day, seven days a week?

There is.

A group of current and former caregivers has banded together with a mission to enable everyone facing ALS to more quickly gain tangible and practical knowledge to overcome daily challenges by providing first-hand, life-learned insights based on our own experiences as caregivers to people with ALS.

ALSCaregivers.org is a free online library of essential caregiver insights built upon ALS community collaboration.

As you scroll through ALSCaregivers.org you will find:

• The top section provides registration links to free ALS-related workshops.
• The middle section hosts quick-read, subject-based e-books of shared knowledge along with videos captured from related workshops. These topics include overcoming bathing challenges, lower body weakness, overcoming traveling challenges, and much, much more.
• The bottom section provides a quick way to jump to specific topics within the knowledge hub, like basic communication tools, eating techniques, etc.

In addition, each year the group presents ten workshops on commonly encountered challenges. While three or four of these are in-person workshops offered in St. Louis, the rest are offered virtually via Zoom. The workshops are open to anyone. Dates and registration links can be found on the alscaregivers.org site.

Take time to explore this free value-packed resource. You will emerge encouraged, inspired, and more equipped than when you started. No one battling ALS should start at ground zero. Instead, they should build upon a foundation of learnings shared by current and former caregivers. We know the questions tumbling around in the minds of caregivers. We share the fears and frustrations not spoken but held deep within the heart.

This community hub only exists through all of us sharing our learnings. If you find value in ALSCaregivers.org, help us expand this spring board of learning. Choose to join us and share your insights, tips, tricks and tools. Please reach out to info@alscaregivers.org. ALS knows no boundaries, and neither should our knowledge sharing.