About

Amyotrophic Lateral Sclerosis (ALS) / Motor Neuron Disease (MND) is a rare, incurable and progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord which gradually takes away the patient's ability to walk, move, speak, express, chew, swallow, eat and breathe due to irreversible paralysis of all voluntary muscles in the body. It effectively renders the patient with a perfectly healthy brain trapped inside his own body. The patient has an average life expectancy of 2 to 5 years and usually dies of suffocation and/or respiratory failure and/or malnutrition unless put on a feeding tube and breathing support. ALS does not affect any internal organs, intellect or personality. 

एमियोट्रोफिक लेटरल स्क्लेरोसिस (एएलएस) / मोटर न्यूरॉन डिजीज (एमएनडी) एक दुर्लभ, लाइलाज और प्रगतिशील न्यूरोडीजेनेरेटिव बीमारी है जो मस्तिष्क और रीढ़ की हड्डी में तंत्रिका कोशिकाओं को प्रभावित करती है जो शरीर में सभी स्वैच्छिक मांसपेशियों के अपरिवर्तनीय पक्षाघात के कारण धीरे-धीरे रोगी की चलने, हिल्ने, बोलने, व्यक्त करने, चबाने, निगलने, खाने और सांस लेने इत्यादि की क्षमता को खत्म कर देती है। यह रोग  प्रभावी रूप से रोगी को उसके शरीर के अंदर पूरी तरह से स्वस्थ मस्तिष्क के साथ छोड़ देता है। रोगी की औसत जीवन प्रत्याशा 2 से 5 वर्ष है और आमतौर पर दम घुटने और/या श्वसन विफलता और/या कुपोषण से रोगी मर जाता है जब तक कि उसे फीडिंग ट्यूब और सांस लेने के लिए सहारा न दिया जाए। एएलएस किसी भी आंतरिक अंग, बुद्धि या व्यक्तित्व को प्रभावित नहीं करता है।

This website is to raise awareness and educate about ALS. We did not have any idea about ALS when our father was diagnosed in August 2016 (with symptom onset in 2015) and we were told by the doctors that he won't survive beyond two years. This is 2022 and our father is still able to live his life with the help of life-prolonging invasive surgical interventions (Tracheostomy, PEG Feeding tube), a portable ventilator and round-the-clock care with close monitoring at a mini ICU setup at our home without the help of any doctor or nurses. He is not in a vegetative state and is completely aware/alert of his surroundings like the greatest scientist Stephen Hawking was. You can read our ALS story in detail. 

Our ALS journey required a lot of time and effort to research various aspects of the management of the disease. On this website, we have been documenting our learnings with ALS.  We hope it will help other ALS families who are looking for information to manage an ALS patient at various stages of the progression.

If you are a PALS (Patient with ALS) or CALS (Caregiver/Family Member of an ALS patient) and based in India, you may like to join the WhatsApp support group by ALS Care and Support Foundation, India, which was founded in 2015 by another Delhi based family affected by ALS. This is the best ALS advocacy and support group in India. 

While the other sections of the website are being populated, you can visit the "a typical day" section where we are actively trying to put videos of various day-to-day activities of our father's management at the home ICU. Please visit the disclaimer section on a high priority.