A DEDICATION
Written by: Dulce Quintanilla, an ALS caregiver
This is the story of my extraordinary father, a man who courageously faced dementia, triumphed over colon cancer, and grappled with the relentless advance of Amyotrophic Lateral Sclerosis (ALS), a rare and debilitating neurodegenerative disease.
Initially confronted with mild cognitive dementia in 2019, my father refused to let the diagnosis define him. Despite its onset, he continued to cherish life, creating cherished memories that illuminated even the darkest days. However, the arrival of COVID-19 in 2020 introduced a new chapter of struggle, culminating in a prolonged hospitalization that shattered our hopes for his swift recovery.
In 2021, the battle intensified with a stage 3 colon cancer diagnosis. Undeterred, my father faced this formidable adversary with unwavering hope and determination, refusing to yield to despair. Yet, amidst the tumult of his cancer treatment, another insidious foe emerged – ALS.
In November 2021, my father began to experience initial symptoms of ALS, the disease that gradually crept into our lives. At first, it was subtle, manifesting as inexplicable weakness in his right arm. We couldn’t quite explain it, but we knew something was wrong. During this time, he had been undergoing chemotherapy, to which some doctors had attributed his muscle weakness to the treatment. However, as weeks turned into months, his strength continued to wane, despite him receiving physical and occupational therapy. Simple daily tasks like eating, bathing, and grooming became increasingly difficult.
Stepping into the role of primary caregiver, I made the difficult decision to leave my job, ensuring that my father received the care he so desperately needed within the sanctuary of our home. Months of exhaustive consultations with neurologists and a battery of tests yielded no definitive diagnosis, leaving us to witness his progressive deterioration with a sense of helplessness.It was a trying period, watching my father lose his ability to speak, self-feed, chew, or even walk without assistance.
In November 2022, amidst the bleak prognosis, a ray of hope emerged as a neurologist pronounced the long-awaited diagnosis of ALS. Though bittersweet, this revelation provided clarity, enabling us to forge a more informed care plan for my father. Just two months later, on that fateful day, June 20, 2023, my father’s struggle with ALS reached its heart-wrenching conclusion. His battle with respiratory complications finally led him away from us, marking the end of his journey with ALS.
While ALS remains an inexorable challenge, devoid of a cure, I remain steadfast in my conviction that collective efforts can pave the path to progress. Through advocacy, awareness, and support, I strive to honor my father's memory, shedding light on the plight of ALS patients and their families.
To this end, I've embarked on a mission to cultivate a community of compassion and understanding, leveraging social media to share my father's story and provide invaluable resources to fellow caregivers. By fostering a space of warmth and solidarity, I endeavor to offer solace to those navigating the daunting terrain of ALS, ensuring that no one faces this journey alone.
