About

Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neuron Disease (MND), is a rare, progressive, and currently incurable neurodegenerative condition. It attacks nerve cells in the brain and spinal cord, steadily robbing patients of their ability to walk, move, speak, eat, swallow, and breathe as voluntary muscles become permanently paralyzed. Throughout this process, the patient's mind remains completely intact — a fully conscious person trapped within a body they can no longer control. Most patients survive between two and five years after diagnosis, with death typically resulting from respiratory failure or malnutrition unless mechanical ventilation and feeding tube support are provided. The disease leaves internal organs, cognition, and personality entirely unaffected.

This website is dedicated to spreading awareness and knowledge about ALS. When our father received his diagnosis in August 2016 — with symptoms having appeared as early as 2015 — our family had no understanding of the disease. Doctors gave him two years at most. Nearly a decade later, he is still with us.

His survival has been made possible through tracheostomy, a PEG feeding tube, portable ventilation, and uninterrupted hands-on care within a home-based ICU — managed entirely by our family. Like Stephen Hawking, he remains fully alert and aware of everything around him. You can read our ALS story on this website. 

Managing ALS demanded countless hours of research, trial, and learning. We have been documenting everything on this website — our experiences, discoveries, and practical guidance — in the hope that other ALS families can benefit from what we've learned at every stage of the disease.

If you are a PALS (Person with ALS) or CALS (Caregiver or family member) based in India, we encourage you to join the WhatsApp support group run by the ALS Care and Support Foundation, India — the country's foremost ALS advocacy and support network, founded in 2015 by a Delhi family affected by the disease.

We are actively building out the website. In the meantime, visit the "A Typical Day" section to watch videos of our daily caregiving routines, and please read the Disclaimer section before exploring further.