Living with ALS: Rogelio Chiari and María Eugenia's stories of resilience

Living with Amyotrophic Lateral Sclerosis (ALS), a progressive neurological disease that gradually impairs mobility, presents immense challenges. However, for Rogelio Chiari and María Eugenia in Panama City, the diagnosis has not extinguished their will to live. They are embracing technology and personal resilience to navigate the disease's progression and maintain their quality of life.

Rogelio Chiari began experiencing symptoms in early 2023, initially noticing difficulty moving his right foot. Dismissing it as stress or fatigue, the condition worsened over time. Now, technology serves as his bridge to communication. He controls a computer with his eyes, enabling him to express himself through artificial intelligence. "Although today we cannot control everything the disease does, we can make decisions that help us maintain our independence and quality of life for longer. And believe me, that makes a big difference," Chiari affirmed.

María Eugenia is also confronting her diagnosis with determination. Her symptoms began subtly, with a persistent cold that affected her speech and caused choking while drinking. After consulting specialists, she was diagnosed with ALS. She now communicates via a mobile app, receives nutrition through a feeding tube, and continues to eat orally to preserve swallowing function, albeit slowly. She also undergoes physical and occupational therapy.

María Eugenia's family emphasizes that her diagnosis is not a limitation. She continues her daily work routine, with her family assisting with tasks like buttoning clothes or putting on earrings. Her resilience inspires those around her.

Rogelio has made it his mission to share this passion for living. He uses social media to connect with others, offering guidance, sharing experiences, and fostering support groups for patients and families facing similar struggles. June 21st marks World ALS Day, dedicated to raising awareness about this neurodegenerative disease that affects motor neurons responsible for voluntary movement and the challenges faced by those affected.

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Because although today we cannot control everything the disease does, we can make decisions that help us maintain our independence and quality of life for longer. And believe me, that makes a great difference.