How ALS Changed My Family’s Life: A Personal Story of Caregiving, Cooking, and Love. Three years ago, my dad was officially diagnosed with ALS (Amyotrophic Lateral Sclerosis)—though he had sensed something was wrong long before. His symptoms started in his arms, then gradually affected his legs. Today, he relies on a wheelchair and can no longer move his arms, and he continues to decline slowly.
What’s been especially heartbreaking is how ALS has taken away his favorite hobby: cooking. My dad loved everything about food—barbecuing, smoking meats, baking sourdough bread, and perfecting recipes over days, sometimes weeks. For a while, he baked fresh sourdough bread daily, sharing loaves with neighbors and friends faster than we could eat them. Everyone loved his food. My friends always hoped for an invite to our dinner table.
But as ALS weakened his arms, he slowly stopped cooking. He gave his beloved pizza oven to my cousin—someone who shares his passion for food—and passed along his sourdough starter to her as well. She enjoys baking with it and ships fresh loaves from Arizona. While my mom now handles most of the smoking and barbecuing, I have made a few Sunday dinners with my dad coaching from the sidelines. Neither of us loves cooking the way he did, but we’re learning to cook for him, by him—and for ourselves.
(As part of this journey, I’ve started sharing weekly recipes here on the blog—some are my dad’s beloved creations, and others are new ones we’re learning as we care for him. It’s our way of keeping his love of food alive, even as ALS changes how we do things. Be sure to follow along for family stories and meal inspiration from our kitchen.)
ALS doesn’t just impact the body—it reshapes the rhythm of a family. My dad, once fiercely independent, now needs daily help with tasks like making drinks, eating, getting dressed, and moving personal items. It’s hard for him to ask for help. Losing that independence weighs on him emotionally. Some days, joy feels far away. As a family, we do our best to lift his spirits, but it’s painful watching him grieve the life he once had.
Technology has been a blessing. My dad watches my niece Leyla’s softball games through a streaming app—a small joy that means the world to him. After all, he was my softball coach for ten years, and one of the best I’ve ever known. He still offers Leyla pointers, and she loves knowing her Papa is cheering her on from home. He can also attend church virtually, when the Spirit moves him to (one silver lining from the COVID era), and uses voice-to-text to send texts and emails.
Last October, we threw him a birthday party that felt like a reunion. Friends and family from eight states gathered to celebrate him. That day—and the steady stream of visitors since—remind him (and all of us) how deeply he’s loved. The calls and texts come more often now too, and they help.
Every day, we try to focus on the present. Living with ALS is unpredictable, but my mom looks ahead and plans for what’s next, while I focus on soaking in where we are now. He’s my dad and Leyla’s Papa—and nothing will ever change that. We all love him, and together, we’ll face whatever challenges come.
Have you or someone you love been affected by ALS?
I’d love to hear your story. How have you worked through the challenges of caregiving or living with this diagnosis? Feel free to share in the comments—our family finds strength in community, and your insight might encourage someone walking a similar path.