Help Hemant Fight ALS

The story

In 2017, my dad started having a bit of trouble walking. He had slowly worsening muscle weakness and atrophy in his left leg. No pain, cramping, or strange sensations. But anytime he tried to lift his leg more than a typical stair’s height, the leg gave out (this is called a foot drop). He’d had these signs for a while and was seeing several neurologists to figure out a diagnosis. They’d done bloodwork, diagnostic tests, and MRIs. They hadn't found anything yet.

He was working on and off as a contractor in software development, until June 2018 when his last contract ended. It was harder for my dad to find work, given his physical condition. So, since last June, my parents have been living off of personal savings. Because of his work situation, they switched around health insurance plans a lot and are currently on a free plan through the state of Massachusetts. By this time, my dad started to experience muscle cramping and fasciculations alongside the initial signs of weakness.

Finally, this past Fall 2019, my dad was diagnosed with ALS. By this time, the weakness had spread to his right leg and left arm. Diagnosis typically takes around 6 months. But because it was hard to even schedule appointments and receive care due to changes in insurance plans and the difficulty of diagnosing ALS (even under normal circumstances) this diagnosis was delayed to 30 months from onset of his clinical signs.

What is ALS?

ALS: Amyotrophic lateral sclerosis. Lou Gehrig's disease. The same disease Stephen Hawking had. The one that people did the ice bucket challenge for many years ago. 

This diagnosis was devastating for our family.

ALS is a slowly progressive, neurodegenerative disease of upper and lower motor neurons. This means that over time, the neurons that tell the voluntary muscles in your body to contract slowly die. For most people, it starts with having trouble walking or picking up things, then spreads to loss of ability to speak, swallow, or chew. In the end stages, it destroys the muscles of breathing. It is always fatal, with a median survival time of 3 years. There is no cure for it currently, only medications that have been shown to extend survival or slow progression by a few months.

Where we are right now

My dad's situation is critical. After receiving medical care in India, at his childhood home of Jodhpur, he returned home to MA in late November.  Ironically, it was easier to receive care in India than here in the US. He was supposed to return to the States in October, but extended his stay until November to continue receiving treatments of Edaravone, a drug that has been shown to possibly slow down ALS progression. He is able to walk only with support and great effort. He has not had an income since June of last year, and was only recently approved for Federal Social Security Disability Benefits, because an actual diagnosis is needed before you can apply. He is now receiving medical care in the US and will be continuing to receive treatments of Edaravone.

My family and I are doing everything we can to help. My mom is currently in MA taking care of home affairs, and me and my brother are both in school in CA. I (Hemant's daughter) am thousands of miles away from him in the US, but I am writing out our story to help him to start this campaign. My parents aren't usually the types to ask for help, but right now we need it more than ever.

How you can help

Please consider donating to our family to help support us during this difficult and scary time. Any amount you can give will help my parents with medical bills, house expenses, groceries, travel, etc. 

Thank you for taking the time to read our story, and please share it with others.

-Maegha Singh

Learn more about ALS and what you can do to fight this horrible disease at The ALS Association website