A person with locked-in syndrome can communicate, but it is exceedingly difficult, as they cannot talk or move any part of their body other than their eyes. To convey their thoughts or ideas, they must rely on eye movement patterns, and others must learn to read these patterns and understand them. This process can be as difficult and time-consuming as learning another language.
Studies indicate that people with locked-in syndrome can enjoy happier and more meaningful lives than most people believe they can — but that learning to communicate with loved ones is a crucial component to unlocking this elusive quality of life. It requires effort from both the patient and their loved ones to get to the point of clear and meaningful communication, but the payoff is well worth it.
The Challenges of Locked-In Syndrome
Locked-in syndrome is like having quadriplegia with the added difficulty of not being able to move any facial muscles save for the ones controlling eye movement. Often, a person’s eye movement is limited to looking up and down, not side to side. But the condition does not affect cognitive function, eyesight, or hearing. So, a patient can see, hear, and understand everything going on around them. They have difficulty responding to any of it.
A person with locked-in syndrome could be happy, sad, anxious, or scared to death, but their outward appearance never changes, nor can they voice what they are feeling. They can react to things only by moving their eyes. Anyone who wishes to communicate with them must take the effort to pick up on their eye movement patterns and understand what they mean. A therapist can be hugely beneficial in facilitating this process.
Treatment of Locked-In Syndrome
Unfortunately, locked-in syndrome has no effective cure, and for most patients, it is a lifelong condition. On rare occasions, doctors have been able to treat the underlying cause immediately after onset and reverse the damage. But for most patients, the best they can hope for is to adapt to the condition and learn to live a fulfilling life despite it.
Most treatments for locked-in syndrome focus on this goal. And they work best when they involve not just the patient but also their loved ones and caregivers, as learning to communicate effectively is the biggest key to adaptation. Once a patient knows they can get their thoughts across to those they love, their quality of life measurements tends to rise substantially.
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