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In the Blink of an Eye

Margaux Kearney's picture

Imagine being fully conscious and aware of your surroundings. You faintly hear the birds chirp high up in the fir trees, you recognize family and friends gathering around you, your imagination floats to a field covered with bright sunflowers but you are unable to relay these experiences to anybody around you. Your most basic wishes cannot even be answered.  What would it be like to be imprisoned in your own body and have no way to communicate your feelings, desires, and thoughts to the world around you? Locked in syndrome (LiS) is a rare neurological disorder characterized by complete paralysis of all voluntary muscles except for those controlling movements of the eye (1).  

 The exact cause of LiS is not fully known; however, it is often attributed either to a lesion in the brainstem, an extensive demyelination refuting the brain of its peripheral connections, a stroke, or an injury (2). The damage caused by these conditions prevents the message initiated by the brain to be relayed to the muscle cells in order to instigate voluntary movement (3). In normal circumstances, a series of signals that can be described as an electrical stimulus or disturbance travel from the brain cells down neurons to trigger the release of neurotransmitters in the synaptic vesicles of the presynaptic terminal. The chemical messages instigate the muscles to move. However, in the case of LiS, the impulses are still fired by the brain, but the muscles do not receive the message to initiate muscle movement. The cables located in the cranial cavity have been severed: the brain generates a signal, but the message is unable to be propagated to the muscle fibers. Jean-Dominique Bauby, the French Elle editor who suffered a stroke and became a victim of locked in syndrome, as well as many other patients like him, still retain the “I” function (4), but are unable to relay the impulse from the brain to muscle fibers below the injury site.

 From an ethical point of view, the challenge for clinicians is to acknowledge and understand the feelings and desires of patients suffering from locked in syndrome. These patients’ lack of verbal communication and ability to move can easily lead to a misinterpretation of their needs. Medical staff often does not understand that “their patient is a silent and unresponsive witness to everything that is happening around them.” (2) It is therefore essential that doctors and nurses listen carefully to family and friends who may notice subtle indicators in support of a diagnosis (2). What should never be overlooked is that underneath the rigid and contorted body position, beyond the drooping smile, and the inability to express a personality, a fully conscious and intelligent human being exists. It is no wonder that LiS patients often struggle to find a personal identity and their place in the world. The nature of human beings is “to be recognized, engaged with and taken seriously by those around one through entanglement in the world and the many conversations whereby one articulates and develops one’s own abilities.” (2) Despite the difficulty, it is vital to the emotional and mental health of patients suffering from LiS that family and medical personnel be a constant source of support. Even though these patients cannot communicate their thoughts, ethical behavior dictates that their care givers should acknowledge their individuality through mature communication.

There is, to date, no cure for this rare neurological disorder, or any known course of treatment (1). However, advancements in research and technology show promising signs for patients afflicted with locked in syndrome. One method developed to allow them to communicate with the world involves an electrode implanted in their brain, which detects electrical impulses directly from a number of brain cells (3). A software system then picks up and translates the “activity of thought” to maneuver a computer cursor and produce speech (3). Another method of communication is based on the use of transparent Perspex boards with the letters of the alphabet (2). Through the blink of an eye, LiS patients are able to indicate the letter they wish for after it is spelled out, and they can in this way form complete sentences to communicate with the outside world.  However, one patient described “[the process] as being extremely laborious!” pointing out that “It’s also very difficult (almost impossible) to express yourself or be sarcastic!”(2). Another difficulty is to confirm whether or not the advancing research being performed with monkeys, their thoughts and robots could successfully be applied to patients affected with LiS. A team of neuroscientists and researchers in North Carolina and Japan have been working with a monkey’s brain signals in order to make a robot walk (5). These experiments offer incredible hope for paralyzed patients with LiS as they could possibly end up walking by directing devices with their thoughts. Electrodes in the person’s cranial cavity would propel signals to a device worn on the hip that would then transmit the signals to a pair of braces worn around the legs (5). The breakthrough could well be that “When the person thinks about walking, walking happens” (5).

 What remains a puzzling question is how and why patients afflicted with locked in syndrome lose control of all voluntary muscles except those controlling the movement of their eyelids. How can we explain that only the circuitry system regulating some or all the ocular muscles continue to function? Shouldn’t signals from the brain be able to relay messages to muscle fibers above the injury site and neurotransmitters therefore released from the synaptic vesicle contract the surrounding muscles? Whatever the causes and mechanisms involved in this remarkable phenomenon, the blinking of the eye lids provides a minute yet startling way for patients suffering from locked in syndrome to communicate with the outside world. 





                                                                         Works Cited 

(1). “NINDS Locked in Syndrome Information Page.” National Institute of Neurological Disorders and Stroke. 14 February, 2008. 

(2). Grant Gillett and Nick Chisholm. “Locked in Syndrome, PVS and Ethics at the End of Life.” Journal of Ethics in Mental Health, Vol.2, No.2. November 2007. 14 February, 2008. 

(3). “Unlocking Locked in Syndrome.” Society for Neuroscience. November 1999. 14 February, 2008. 

 (4). Professor Paul Grobstein. Neurobiology and Behavior Lecture. 12 February, 2008. 

 (5). Blakeslee, Sandra. “Monkey’s Thoughts Propel Robot, a Step That May Help Humans.” The New York Times. 15 January, 2008. 14 February, 2008. 


Serendip Visitor Vanessa Bostic's picture

diagnosing and preventing

dianosis...locked in syndrome..aka someones self jail, one goes to an emergency room to seek help for extreme high blood pressure, almost released to go home until brought to the attention of the Doctor that the blood pressure was still 200 plus over 100 plus, soon the Doctor agrees the patient must be admitted, shortly after 5 a.m. the next morning the patient strokes, has has labored breathing so they vent the patient and the patient was not sudated enough that they then had to strap the patients arms down and calm the patient from biting at the tube, so as to keep the patient vented a mildly induced coma!, okay...the patient is later flown to a stroke nuero hospital in Charleston WVa, and now the family is told that the patient is or has Locked In Syndrome!, is this right?..he was moving body parts after the stroke, he was fighting the he is in every thing I have read nothing supports the events leading up to the now product, now what does the family do? my understanding communication is a good thing prior to this event, was it an infection?, was it a seizure?, it plainly states that it is a clot or a leision on the brain stem, the family was told that it was not a bleed out or a clot!! what caused this?? do you prevent something you cannot define?.....I am not a Doctor, nor a grad student, i am some poor schmo that was concerned about a loved one, and one persons sickness though may not be contagious certainly effects so many!!!

Kelly Kaye's picture


I am a grad student in Speech Language Pathology currently doing my practicum at a local hospital before I graduate in May 2009. I have been given a recently diagnosed LIS patient and I thank you for your insights here in the blog. I am surfing the web for my patient trying to find instances to give them hope. It takes us 20 minutes to spell two words. I feel that the time will get shorter w/ practice and as my patient build's up his/her strength. Such a small thing for us, but utterly exhausing for my patient.

What I find interesting is that my patient chooses not to use words to describe his/her condition, such as "hungry", "cold", or "tired" but instead s/he spells out their profession and the name of a school s/he attended. They want to connect and be known as a person---not a lump of flesh in a bed.

Anonymous's picture

Regaining certain functions in Locked in syndrome

On the website above, It was interesting that "patients may regain certain functions." I wonder if these functions are the same for all patients? Because the eye movements and functionality are similar to all patients, I question whether patients with locked-in syndrom regain the SAME functions when or if they do regain them? When you figure it out, I would love to know! Thanks!

Paul Grobstein's picture

locking in syndrome and ourselves?

Maybe we are all, to one degree or another, subject to locking in syndrome? See the end of "Inverting the relationship between randomness and meaning".