The only way Nita Parekh (69), a native of Mumbai now residing in Pune, is able to communicate with her family and, on rare occasions, with others, is by blinking her eyes and minimal nodding. “Last time I saw her standing was probably in August 2021”, said Sohil Parekh (45), Mrs. Parekh’s only child and primary caregiver, along with his father. Unable to move a muscle below her neck, Mrs. Parekh has been bedridden for almost two years due to the debilitating effects of a rare disease called Amyotrophic Lateral Sclerosis (or ALS).
According to the Indian Council of Medical Research (ICMR), ALS is a neurodegenerative disease in which special nerve cells called Motor Neurons in the brain and spine — which control an individual’s voluntary functions like walking, chewing, talking, moving their arms — are affected. As these nerve cells progressively die, the muscles dependent on them are unable to function or move, due to which they begin to atrophy or waste away. ALS is a progressive disease. “Once it involves the motor neurons that regulate respiratory muscles, breathing gets affected’, says Joy Desai, a neurologist in Mumbai. More so, there is no effective cure for ALS and the best measures include medical drugs and interventions that could lengthen the life of the person with ALS (or PALS).
While the disease progresses differently in each individual, the average survival time is three years, according to The ALS Association, a non-profit, or between 20 to 48 months on an average, according to a study by Chio et. al, 2009.
Difficulty with the diagnosis
From the onset of symptoms, it takes around 8 to 15 months for diagnosis, according to a study by Paganoni et. al. titled “Diagnostic timelines and delays in diagnosing amyotrophic lateral sclerosis (ALS)”. ALS has no restorative cure, and there are also no definite biomarkers discovered yet that cause it. This gap between the onset of symptoms and confirmed diagnosis is agonising for the caregivers and PALS.
“For ALS, motor cell failure needs to be detected in at least 2 regions of the body; either one of the upper limbs or any of the lower limbs, and one more region like the bulbar region which controls the muscles needed for swallowing, speaking, chewing, and other functions”, Dr. Desai told The Hindu.
Suppose one comes in with just one symptom like their hand not working or a leg that drags, then that is not enough for it to be diagnosed as ALS, according to Dr. Desai.
Sacrifices and changes in ways of living
In November 2010, 23-year-old Ajay Gupta, now 36, was about to begin writing an exam, when he had to leave due to an emergency at home. “Whenever I went for an exam, I’d call my mother and tell her that I’ve reached. And I’d do that after the exam too,” says Ajay Gupta. But when Ajay reached the venue and called his mother, Mrs. Usha Gupta, no one picked up and this frightened him. “I left the venue immediately and went home. I found my mother lying on the floor, with a bruise on her forehead. She had fallen from the bed, and had not been able to pick herself up at all”, he says.
Mrs. Usha’s symptoms started appearing in February that year, but it wasn’t until December that she was diagnosed with ALS. While it was a shock that Mrs. Usha (61) had been struck with an incurable and fatal disorder, it also came with the difficulties of transforming Ajay and his father’s lives.
Being a caregiver is a challenging task for a loved one. “Right now, she is completely bedridden, and has to be tube fed,” said Ajay. Like Mrs. Nita, the only way Mrs. Usha is able to communicate is by blinking. Ajay, then, did not reappear for his CA final exams, and now, he is on medication to help him cope with depression, and faces the daily worry of a nurse or aayah (nursemaid) not showing up for work – wherein he’d have to skip work and help out, and a medical emergency given his mother’s advanced stage of ALS.
Caregivers are completely uprooted from their routines. In Mumbai, Devaunshi Talsania (39), whose mother, VeenaDoshi, succumbed to ALS in October 2017, mentioned, “From 9 in the morning to 10 in the night, I used to be by my mother because she needed help for each and everything. I took her to the washroom every morning, and also bathed her since I was the only female help accessible to her.” Devaunshicouldn’t work and had to stop working, so that she could visit her mother every single day. “Of course, it affected a lot of areas of my life, whether it’s my overall health or social life. But at the end of the day that is nothing compared to the fact that my mother needed me”, Devaunshi told The Hindu.
Sohil’s story is no different than Ajay’s. Sohil (45) had been in the USA for the past 27 years, and until last October (2022) he lived with his wife and two children in the Boston area, where he worked as a head of marketing technology at CVS Health. “In October, I had to leave the US and move back in with my parents. My wife and children and still in Boston”, said Sohil, who, along with his father, makes sure that one of them is always next to Mrs. Nita, should she need anything or if there’s an unexpected emergency. “As the disease progresses, our routines of providing care also keep changing. It doesn’t get easier for my mother or my father and me.
The mental health of the PALS, and their caregivers is affected severely. A 2021 study called “Prevalence of depression among amyotrophic lateral sclerosis (ALS) patients: A systematic review and meta-analysis” by Heidariet. al. draws the conclusion that there is a high prevalence of depression among people with ALS, and it causes a reduction in their quality of life and mobility.
“My mother was very independent and active. She lost her desire to meet people, even her siblings, or socialise because she hated receiving sympathy, and for others to see her in that [paralysed] state. She was very depressed”, said Devaunshi.
Infrastructural inefficiencies
Out of the many problems that affect the quality of life of a PALS, one of them is the lack of accessibility of those restricted to a wheelchair due to infrastructural inefficiencies. While it was next to impossible for Devaunshi to take her mother down from the first floor to a park nearby, as she lived in an 80 year-old building which is not wheelchair-friendly, Ajay does not take his mother out of the residential complex, due to the fear of safety and the lack of empathy he experienced from car and bike drivers in Kolkata.
“If I had to compare what I witnessed in the U.S. and in India, when it came to how wheelchair-friendly they are, I’d say that in India, accessibility does not exist. It’s ironic that even the office of the neurologist we went to was not accessible for wheel-chaired people”, said Sohil. Due to the lack of space in their home in Mumbai, Sohil and his family moved to bigger flat in Pune, where navigating with a wheelchair is possible. “My mother was active and would go for Satsang daily too. We also had to make modifications to our car so that a wheelchair could be integrated to it. Ramps, lifting equipment, commode chairs, are few tools that we acquired to help with mobility”, Sohil told The Hindu.
Around the time when Mrs. Usha got diagnosed, Ajay lived in a building with no elevators. “I carried her down and back up in my arms for almost 6 weeks. We had to move.”
(Coming: Part 2 on ‘The financial burden of ALS’)
