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 Wanda Whaley, “My Journey with ALS.”
My journey with ALS started almost 10 years ago. In October 2015, my husband was diagnosed. At that time I became his only caregiver. That was never a job I wanted, but I love my husband very much to this day and since I was 13 years old. His decline was very quick and he died after 15 months.
In my mind I always questioned why anyone ever had to go through this terrible disease. I have a deep faith and I couldn’t find any answers about why ALS happened. I still haven’t found answers after all this time, but I believe in the Bible and it says “all things work together for the good to those that love the Lord.” I decided I better start looking for something good.
First, I started a group called Cals to Branson, where anyone interested who has lost a spouse could meet in Branson, MO to make friends, and get and give comfort to those who were in the same situation. Let’s face it, no one can ever understand what it’s like if you haven’t lived it. That is probably the greatest thing I will ever do was forming this group. We just got back from our fifht get together this week and I truly feel this group makes a difference in people’s lives.
A couple years ago, I was thinking of retiring, and my daughter asked me what made me most happy about my life. I told her about my group, how we help other people that were going through ALS. She suggested maybe I should form a mentor group similar to what I AM ALS does. I was thrilled with that idea but had no idea how to go about starting such a great idea.
Shortly after, I read something about this group and thought I could accomplish what I wanted and not deal with the admin side so I asked to join and was accepted. After watching a quick video and passing the tests, I was ready to be a peer mentor. I was matched with a lady in Maryland. She is so very kind and appreciative. We have hit it off very well and talk or text several times a week most weeks. I believe by helping others you help yourself and even though we are very far apart in distance, technology makes it easy to communicate whenever I’m needed. I try to be the person I wish I would have had back in my caregiving days.
She has a couple added things to her caregiving role I didn’t have to deal with as her husband has FTD and she has recently moved her blind mother into her house to take care of. I wish I was closer to being able to help her in a physical way. I can’t imagine dealing with either one of those things on top of the normal problems of ALS. I admire her kindness and gentle nature. As I said, I think you help yourself by helping others and that is the reason I would encourage others to be a peer mentor.