The difference between locked-in syndrome and a vegetative state is that a person with locked-in syndrome retains their full mental faculties, whereas a person in a vegetative state does not. However, because locked-in syndrome causes the loss of all physical capabilities and all muscle movement other than the eyes, people can easily mistake it for a vegetative state.
Over time, though, and with the right therapy and a lot of effort, a person with locked-in syndrome can learn to communicate with others using eye movement patterns. In a true vegetative state, a person has no awareness of anything going on around them and no ability to communicate.
The Basics of Locked-In Syndrome
Locked-in syndrome is a type of paralysis affecting not only the four quadrants of the body but also the facial muscles (except those controlling eye movement) and the muscles responsible for actions such as breathing and swallowing. An affected person, therefore, cannot move on their own or talk, requires assistance with all daily living activities, and must eat and drink through a tube and breathe with an assistance device.
A person with locked-in syndrome retains full cognitive function as well as their eyesight and hearing. This allows them to be aware of everything going on around them and to form clear thoughts and opinions. But it is difficult for them to communicate anything they think or feel or even to acknowledge that they can hear or understand you. The only way they can express anything is via eye movement.
How Locked-In Syndrome Happens
Locked-in syndrome happens when a person suffers damage to the pons. The pons is part of the brain stem, and it is mainly responsible for relaying signals between the brain and spinal cord. These signals control muscle movement.
The impulse to move a muscle — anything from scratching your head to kicking a soccer ball to taking a breath — originates in your brain. Your brain sends the signal via the pons into your spinal cord, which relays it to the muscle you are trying to move. It sounds like a multi-step process, and technically it is, but it happens instantaneously.
With a damaged pons, though, a critical piece of the process — transmission of the signal from the brain to the spinal cord — does not happen. If the spinal cord never receives the signal from the brain, it cannot transmit it to the muscle, so muscle movement does not occur, resulting in paralysis.
The Causes of Pons Damage Leading to Locked-In Syndrome
The type of pons damage that causes locked-in syndrome can happen for several reasons but is mostly caused by bleeding in or lack of oxygen to the brain. Either of these can occur for many reasons, including a medical event such as a stroke, embolism, or blood clot. An infection or head trauma may cause brain bleeding, while an event such as near-drowning or suffocation may cause the brain to go without oxygen long enough to damage the pons.
Lou Gehrig’s disease, or ALS, if it progresses long enough, can cause enough deterioration of the may cause the pons to deteriorate. There are a host of less-common events that can lead to pons damage, as well. If your loved one developed locked-in syndrome because of medical negligence, you may have grounds for a medical malpractice lawsuit.
Living With Locked-In Syndrome
Living with locked-in syndrome is like having quadriplegia, with the added difficulty of not being able to eat or breathe on your own or move your facial muscles. Because a person with locked-in syndrome cannot carry out any daily living activities on their own, they require 24-hour skilled care at home.
A person with locked-in syndrome does retain a few abilities, the most significant being cognitive function, eyesight, and hearing. They also typically have normal sleep/wake cycles. Though the condition may sound nightmarish to those who have not experienced it, patients score surprisingly high on quality-of-life surveys.
Treating Locked-In Syndrome
Locked-in syndrome is rarely curable or even treatable to any substantive degree. For most patients, treatment for locked-in syndrome focuses on adapting to the condition and learning to communicate with caregivers and loved ones. This process requires patience and determination, both from the affected and their loved ones.
With the right therapy and the help of compassionate family and friends, a person with locked-in syndrome can lead a meaningful, even happy life.
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