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Satvinder Kaur

“Everyone hopes for a normal life. But who knows you are God’s favorite child. But I must admit that whosoever got struggles in their life , learnt the most and live the most as he/she understand the purpose of life… THE MOST !.
In year 2008 when usual things were moving in my life ..like a average girl who is introvert, holds very less social network but always have been intelligent and fought for right. This time, I was establishing a career and parents were finding appropriate match. And abruptly one day, we got to know from nowhere that usual pain in my mother’s knees is termed as world’s worst neurodegenerative disease ALS  whose lifespan is 2 years for 95% cases. That day onward, life turned upside down. Every moment I was trying hard,  researching something or other on remedies people tried for coping with the disease on internet worldwide.
Within 2 years, our mother was totally paralyzed and was put on ventilator during emergency. That was the time, I came to know about the commercialization of Hospitals and medical services along with their unending negligence claiming innocent lives. I studied Ventilator and its management in my 2 inch small screen display phone while staying in that dreaded ICUs. No-one in medical fraternity was in favor rather they said “”You can’t keep Ventilator at home in India””. My biggest support and strength was my younger sister Sukhvinder and we went ahead with Vent@home decision (without any doctor or nurses at our home). With God’s grace our courageous mother was there in front of us smiling through her eyes for 8 years on Vent and giving nod of this unusual decision(2008-2018)..may be this was first such case in India. Surprisingly, I recently got to know that our case got listed in Limca book of records.
Over decade of this period, every day/week/month wasn’t a easy journey-many life threatening situations, challenges , tough times kept popping in regularly in our unusual daily life, but all this was WORTH IT !!

Numerous challenges and learnings gained in this phase led us pen-down alslifemanagement.weebly.com and built the foundation of ‘ALS care & support group India’ in 2015. Slowly, it became my life’s purpose and currently this platform empower 500+ members with valuable knowledge which is growing everyday with each other’s learning and experiences. This is helping the ALS community in India to walk through this tough journey with care and support TOGETHER.

Not only this, life’s tested me with cancer in 2018 which I feel was nothing in front of ALS devil and I came out victorious i.e. completely cured. It’s mumma’s blessings only that despite I “always been single” due to these extreme conditions, remained strong, financial independent and continue to lead my life with values and respect.

Main purpose of sharing this story to create awareness about ALS in India. My life learnings are “Life can be tough, difficult and totally unpredictable but NOT impossible.”.

Wish you all healthy and wonderful life.”

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