The only way Nita Parekh (69) of Pune, is able to communicate with her family and, on rare occasions, with others is by blinking her eyes and nodding slightly. “The 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).
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’, explains Joy Desai, a neurologist in Mumbai.
Currently, there is no effective cure for ALS and the best therapies are drugs and other 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 organisation, or between 20 to 48 months on an average, according to a study by Chio et. al, 2009.
