How Community Makes ALS Manageable

ALS at any age is devastating, but when Dave was diagnosed in the Summer of 2023 at age 44, our children were just 13 and 10.  Obviously, you can’t pause parenthood to navigate ALS – so our busy, active family life, as well as my career as a teacher, continued as we began our journey of mourning, learning, and planning.  After seeking advice from our clinic, we talked to our kids about ALS, but, at that time, Dave looked and sounded normal, so it didn’t hit hard or feel real.  We welcomed a new puppy into our family, planned a couple of fun vacations, and hoped for the best.

As the disease goes, just two years later, life is very different.  Dave lost most use of his limbs and has trouble speaking and swallowing, so he depends on someone else for nearly everything.  In addition, all the daily hustle of family life now falls on me – and I’m still working part-time.  Given Dave’s progression, the emotional and physical challenges of caregiving often push me to my limits.  Meanwhile, the kids are watching all of this unfold and processing it in their own ways.  This is an impossible situation that is made possible by one thing: I am not alone in my caregiving journey …

• The kids and I are in therapy, providing a safe space for each of us to work through the difficulty of life with ALS
• We receive equipment, advice, and support from a few great organizations: ALS United, CCALS, Team Gleason, Bridging Voice, and Hope Loves Company
• I have support/accommodations from my employer that provides me with flexibility to manage Dave’s care
• Our local friends and family provide helping hands, like driving the kids to activities, assembling medical equipment, and running errands for us
• We have a home health aide come on weekdays, which helps me balance caregiving with mom and work priorities
• We draw inspiration and knowledge from the ALS community through support groups, message boards, and connections with fellow CALS and PALS

Looking ahead, I know things will keep getting tougher – but having this support system in place gives me comfort.  I’m incredibly grateful for this.  My heart goes out to the thousands of fellow CALS navigating their own journeys, who should know: You are not alone! – Lori S. Hulman