Inside I AM ALS is a personal look into the lives, voices, and journeys of those who make up our vibrant and resilient community—told in their voices and their words. Through personal stories, reflections, and experiences, this space highlights the people behind the mission—individuals living with ALS, caregivers, loved ones, advocates, and allies—all sharing their truth with honesty, courage, and hope. Together, we are changing the narrative and working to end ALS. Here’s a submission from our community member Elaine O’Brien.
My mom was diagnosed with ALS in December 2024 after many months of symptoms, decreasing mobility, and lots and lots of visits to specialists. From the moment I heard the news, I felt a sense of urgency to find support and help to cope with this diagnosis. I dove into research looking for resources and groups as it was a place to put my energy. I tried several different support groups before I connected with I AM ALS and found the “Loved Ones” support group.
ALS impacts everyone who loves their person with ALS, and most support groups I found focused on primary caregivers or people living with ALS. So while I enjoyed listening and learning from those support groups, it didn’t feel like the right fit for me. From the first meeting of this group, I knew I had found the right place for me. This group has given me a space to share my thoughts, worries, and feelings, and to connect with other people who immediately understand. There is something special about being part of a group with this shared experience.
I am grateful to the long-standing members of this support group for their knowledge and guidance and I look forward to meeting new members each month. I have loved having Aditi as a facilitator as she provides an opportunity for everyone to share what’s been going on in their lives the past month, but also provides a structured conversation or a prompt to get us thinking and sharing. We share resources, connect on similar experiences, and I always log off the meeting feeling better.
The first support group session you attend is always hard, and maybe even the second or third, but I encourage all of you to keep trying until you find one where you feel comfortable and then to push yourself to keep attending even when it’s hard or even when you cry. It’s so important to have support!
Learn more about I AM ALS’ support group offerings here.