What is Locked-In Syndrome?

Introduction

Locked-in syndrome (LIS) is a rare neurological condition where patients are fully conscious and aware of their surroundings but cannot move or speak. They are, quite literally, "locked" within their own body. Despite the absence of voluntary movement, their cognitive abilities remain intact—they can think, feel, and process information normally.

This devastating condition affects approximately 1-14 people per million worldwide, making it extremely rare. However, in countries like India with a population exceeding 1.4 billion, there are an estimated 2 million individuals living with locked-in syndrome, many unaware that assistive technology exists to help them communicate.

What Causes Locked-In Syndrome?

Locked-in syndrome typically results from damage to specific areas of the brainstem, particularly the pons. The most common causes include:

Stroke: The leading cause of LIS, accounting for 60% of cases. Usually involves basilar artery occlusion.
Traumatic Brain Injury: Severe head trauma can damage the brainstem, leading to LIS-like symptoms.
ALS (Amyotrophic Lateral Sclerosis): Advanced ALS can progress to a locked-in state as motor neurons degenerate.
Tumors: Brainstem tumors or compression can cause LIS symptoms.
Infections: Meningitis or encephalitis affecting the brainstem.

The Three Levels of LIS

Medical professionals classify locked-in syndrome into three levels based on the degree of voluntary movement preserved:

Classic LIS

Complete loss of voluntary movement except for eye movements (vertical and/or horizontal). This is the most common form.

Incomplete LIS

Some degree of voluntary movement preserved, such as head or limb movement, in addition to eye control.

Total LIS

Complete paralysis with no voluntary movement whatsoever. Extremely rare and poses severe communication challenges.

Living with Locked-In Syndrome

For individuals living with locked-in syndrome, the psychological impact can be as significant as the physical paralysis. Many experience:

•Depression and anxiety
•Isolation and loneliness
•Loss of independence
•Communication difficulties
•Family stress and caregiver burden

How Assistive Technology is Changing Lives

Modern assistive technology has opened new possibilities for individuals with locked-in syndrome. Devices using eye-tracking, brain-computer interfaces, and AI-powered communication systems now enable locked-in patients to:

•Communicate with family and caregivers
•Control smart home devices
•Access entertainment and social media
•Participate in medical decisions
•Regain a sense of dignity and independence

NeuroCommandLabs's Role

NeuroCommandLabs develops affordable, accessible assistive communication devices specifically designed for the Indian market. With 92% accuracy and a starting price of just ₹3,000, Eyestalk brings life-changing communication technology within reach of middle-class families and hospitals across India.