It seems that almost everyone knows about “locking in,” but have you ever heard of locked-in syndrome? This article will delve into what locked-in syndrome is, its causes, treatments, and other information pertaining to it.

What is it?

Locked-in Syndrome (LiS), also known as pseudocoma, is a rare neurological disorder that causes paralysis of all voluntary muscles except for part of the eyes. Someone with LiS is unable to move any part of their body, and can only move their eyes vertically, looking up or down, and blink. Despite this, people with LiS have full cognitive and hearing abilities, have a sleep-wake cycle, and can communicate through eye movements and assistive technology.

What causes it?

Locked-in Syndrome is caused by damage to a specific area of the brainstem: the pons. The pons is a structure that links the brain and spinal cord. It allows for signals from the body below the head to be transmitted to the brain. The pons is vital for one’s:

• Motor capabilities

• Abilities to move the face and mouth

• Ability to feel pain

• Sleep-wake cycle

• Breathing

In people with LiS, the portion of the pons that allows for control of motor capabilities and abilities to move the face is damaged, and the motor neurons are blocked. This damage is usually caused by ischemic or hemorrhagic stroke—when either the blood flow to the brain is blocked or a blood vessel to the brain ruptures. Other causes are infection in specific areas of the brain, tumors, inflammation of the nerves, loss of the protective insulation surrounding nerve cells, and other diseases such as Amyotrophic Lateral Sclerosis.

Treatment

Currently, there is no cure or specific treatment for LiS. However, it can be managed through supportive therapy and communication training. This can look like a tracheostomy, a gastrostomy tube, and finding the person with LiS a method of communication, usually coded eye movements and assistive technology such as infrared eye tracking devices. Additionally, its underlying cause can, and must, be treated, such as if the patient went through a stroke that resulted in locked-in syndrome. In rare cases, people have even recovered limited motor abilities from locked-in syndrome, such as in their hands and head!

Additional Information

Currently, locked-in syndrome is generally unpreventable. However, as locked-in syndrome can be triggered by a stroke, the risk of getting it can be lowered by lowering your risk of stroke. Stroke risk can be lowered by managing your overall health, such as by eating healthy, getting exercise, and managing your health conditions such as high blood pressure or cholesterol.

The prognosis, or outlook, for someone with locked-in syndrome is, contrary to what may be believed, usually good! Many people with LiS have been able to live fulfilled and happy lives. And despite having reduced motor abilities, many individuals affected by locked-in syndrome are able to be productive members of society.

Conclusion

Locked-in Syndrome is a rare disorder that can affect the rest of a person’s life. Yet despite the struggles of living with it, people have been able to live happy, meaningful lives. So, the next time you say “it’s time to lock in”, think about these people. If they can push through the struggles of life while being “locked-in,” you can too; without being “locked-in!”

Works Cited:

Cleveland Clinic. (2022, March 3). Locked-in syndrome (LIS): What it is, causes & symptoms. https://my.clevelandclinic.org/health/diseases/22462-locked-in-syndrome-lis

Cleveland Clinic. (2025, January 27). What are stroke symptoms? https://my.clevelandclinic.org/health/diseases/5601-stroke#prevention

Harvey, R. L. (2025). Locked-in syndrome (LIS). Shirley Ryan AbilityLab. https://www.sralab.org/conditions/locked-syndrome-lis

Maiese, K. (2024, April). Locked-in syndrome - neurologic disorders. MSD Manual Professional Edition. https://www.msdmanuals.com/professional/neurologic-disorders/coma-and-impaired-consciousness/locked-in-syndrome

Pistoia, F., & Laureys, S. (2018, March 7). Locked in syndrome - symptoms, causes, treatment: Nord. National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/locked-in-syndrome/