Bauby's The Diving Bell And The Butterfly

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"Whereupon a strange euphoria came over me. Not only was I exiled, paralyzed, mute, half deaf, deprived of all pleasures, and reduced to the existence of a jellyfish, but I was also horrible to behold" (Bauby 27). This is a quote from Jean-Dominique Bauby's memoir entitled The Diving Bell and the Butterfly, in which the editor-in-chief of the French version of Elle magazine describes his very rare neurological disorder called Locked-in Syndrome. Locked-in syndrome, or Cerbromedullospinal Disconnection, is the complete and total paralysis of all voluntary muscles except for the eyes. It can also be described as a pseudocoma, where the person cannot move or speak but remains conscious and awake. The disease is caused by damage to a part of …show more content…
Although muscular function is diminished, cognitive function is unaffected. Currently, there are three types of LIS as described by Bauer; complete or total (quadriplegia and anarthria, no eye movement), Classic (vertical eye movement and blinking), and Incomplete (some voluntary movements are recovered and more eye movements available). Both males and females are equally at risk for Locked-in Syndrome. It can also affect people of any age but mostly adults who are more at risk for strokes and brain bleeding. Sadly, because the disease is so rare, many cases go unrecognized and are misdiagnosed by doctors. In order to diagnose LIS, a patient must go through a series of tests. These tests include; an MRI, EEG, electromyography, and nerve conduction tests. On average it can take up to two and a half months to diagnose …show more content…
It targets small voluntary movements usually in specific areas like a finger, swallowing or speech production. Doctors request that therapy is started as soon as physically possible, as it will be most beneficial to the patient. Normal habits of speaking, motor movements, swallowing and walking will most likely never be acquired. Good nutrition habits are also a must. Eventually, once they are well enough, patients can be fed orally and possibly breath without assistance. It is not expected for anyone to make a full recovery from this disorder. Despite odds of a normal life not being in their favor, most patients are somewhat satisfied with their quality of life. They more than likely continue to have the will to live throughout their life. LIS patients are often able to live with pain and symptom management. As soon as they are passed the comatose states, their life expectancy increases by decades. Additionally, there are now devices that are able to to detect eye movement and provide these patients with a voice. They even have the ability to surf the web or send and email to friends and family members. Thanks to advancements in technology, LIS patients can now take steps to live a more normal and fulfilling life. Some patients that are lucky enough to gain some motor skill back to the head or hand can use more advanced technology and possibly control their own

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