I am Chandra Nariani

I lost my dad on December 17th 2021 to Bulbar ALS.

It was a shock to all of us as we had never heard of it before. In India it is referred as Motor Neuron Disease (MND).

He is survived by his wife Vimla, son Suraj and daughter in law Kavita, daughter Chandra and son in law Sushil, and 2 grandkids Saniya and Rohit.

He was formally diagnosed on June of 2019, looking back his symptoms had probably started in October of 2018.

My father was a healthy, athletic, muscular, super hardworking, intelligent and loving man with no health issues at all.

He was a pioneer who built barges and loved people and life.

This disease just sucked the wind from beneath our wings.

Till the end my father said I will get better, this is rehab.

He was put on bipap in June of 2019, his voice got hoarse slowly and he couldn’t have long conversations. And man did he love to talk.

December 6th 2019 he had a cardiac arrest out of nowhere. He was intubated for a few days when we had to make a decision of doing the tracheostomy. The doctors suggested and did a neurological test; he was alert and passed the test with flying colors.

That’s when we decided to do a tracheostomy and put in a feeding tube.

With 3 months given to us we just wanted to take him home, where he would be happy even with the little time given to him.

It’s a miracle we brought him home on a ventilator on January 2nd 2020. We had ups and downs in the 22 months to follow, but he made it through. Until December 17 2021 when ALS took over. He lost all his muscle mass and succumbed to the disease.

My dad used to communicate with us with patience, we all at home learned to lip read him. Until October of 2021 he could move his fingers to spell words on a white board. He would say good night, good morning and have a nice day to the nurses and whoever he met during his day. Towards the end the light in his eyes had dimmed but never his spirit.

My father never liked to get help from anyone and was a shy man, he liked doing his own work (laundry, dishes, making the bed etc). Being dependent was the worst thing that could happen to him.

If he had known what kind of disease he had he would have never wanted to be on the ventilator.

If we had a test to diagnose this disease he would have a chance to make a choice. He was robbed of that choice because we do not have a way to diagnose this disease, other than by process of elimination.

I want the world to be aware of this, I want more knowledge and better testing so this disease can be diagnosed and not just by process of elimination. Testing is hard and expensive and many people can’t afford it. So they just let it be.

His doctors said his sheer will power, love and care at home is the reason he survived on a ventilator this long. They had never heard of this in the medical community.

I want to join you in getting funds for a cure for this disease. I want to help spread the signs and awareness, I want to tell the world there is a lot more we can do to have a good quality of life even with a diagnosis of ALS.

My dad was my best friend and I miss him very much. He was taken too soon from us at the age of 76.

Even in his last stages, he had his sense of humor and charm.

I just want to help any way I can with this disease.

Thank you for reading my long story.

Chandra