The three categories of locked-in syndrome are complete, classic, and incomplete. The severity of the condition and the level of movement restriction determine the category of locked-in syndrome, with complete form being the most severe, incomplete form the least, and classic form in the middle.
No matter which category of locked-in syndrome a person has, the condition is catastrophic and life-changing, as it removes all physical capabilities. That said, with the help of treatment, therapy, and patient and understanding loved ones, a person with locked-in syndrome can have a happy and meaningful life even without muscle movement.
Complete, Classic, and Incomplete Locked-In Syndrome
Locked-in syndrome is characterized by quadriplegia (paralysis in all four quadrants of the body) plus the loss of movement in all other voluntary muscles, including facial muscles and those that control actions such as breathing and swallowing.
Though the condition has three levels of severity, even the least severe of them causes total disability and, in most cases, the need for 24-hour skilled care. A person with locked-in syndrome cannot carry out daily living activities on their own and generally needs an assistance device to breathe and a feeding tube to eat and drink.
Locked-in syndrome differs from a vegetative state because those with locked-in syndrome are aware of their surroundings.
Classic Locked-In Syndrome
Classic form involves total paralysis of all four quadrants of the body and the inability to move all other voluntary muscles except the ones controlling eye movement.
A person with classic locked-in syndrome can move their eyes and nothing else, and their eye control is often limited to vertical movement. This ability might seem insignificant to a non-disabled person, but it is the key to communication for a person with locked-in syndrome. Over time, they can learn to convey thoughts to others using subtle patterns of eye movement.
Complete Locked-In Syndrome
Complete locked-in syndrome is just as its name indicates — complete paralysis of every voluntary muscle in the body, including those that control eye movement.
A person with the complete form of the condition still has full cognitive function, hearing, and eyesight. But the loss of eye movement is significant, as patients with the classic and incomplete versions of locked-in syndrome can learn to move their eyes in different patterns and sequences in order to convey their thoughts, opinions, feelings, and emotions.
Incomplete Locked-In Syndrome
Incomplete locked-in syndrome involves the recovery of movement in certain voluntary muscles other than those that control the eyes. Very few people who develop locked-in syndrome ever fully recover, though it has happened on rare occasions.
Life with Locked-In Syndrome
Life with locked-in syndrome is challenging but can be very fulfilling. While patients require 24-hour skilled care and assistance with all daily living activities, they can learn to live happy and meaningful lives, and when researchers have conducted quality of life studies on locked-in syndrome patients, the results have been surprisingly positive.
Learning to communicate is key, both for the patient and for their loved ones. This presents an additional challenge to people with complete locked-in syndrome. But even a patient with no eye movement can have a satisfying quality of life just from knowing they are surrounded by those who love and care for them.
Treating Locked-In Syndrome
Since locked-in syndrome is almost always permanent, treatment focuses on adapting and living with the condition. If the patient can move their eyes or other minor muscles (in the case of incomplete form), they can learn to communicate with loved ones and caregivers with subtle muscle movement patterns.
The adjustment process is as important for loved ones as it is for the patient. Family members should be patient and persevering, especially when developing a communication system with their loved one — a process often compared to learning a new language.
Locked-in syndrome can be very expensive. It often requires round-the-clock care and several different types of assistive devices; it also takes away a person’s ability to work. These costs can put any family in financial distress. But you may not need to shoulder these costs.
If you suspect your loved one’s locked-in syndrome resulted from the negligent actions of a medical provider or facility, a locked-in syndrome lawyer from Pintas & Mullins can help you pursue a medical malpractice lawsuit and recover damages. We offer a free consultation and work on a no-win-no-fee basis — we do not get paid until you do.
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