Locked-in Syndrome ~ Rom Houben

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I saw this on Channel News Asia today and searched for it on the internet. Locked in with no way of communicating must have been very, very difficult --- especially when no one thinks that you're conscious.
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Original Link:
http://www.kansascity.com/105/v-print/story/1589975.html
Posted on Mon, Nov. 23, 2009
Belgian man was conscious throughout 23-year-long misdiagnosed vegetative state
By RAF CASERT, The Associated Press

BRUSSELS. For 23 torturous years, Rom Houben says he lay trapped in his paralyzed body, aware of his surroundings but unable to tell anyone or even cry out. The car-crash victim had been diagnosed as being in a vegetative state but apparently was conscious the whole time. An expert using a specialized type of brain scan that was not available in the 1980s finally realized it and unlocked Houben’s mind. Houben, 46, now communicates with one finger and a special touch screen on his wheelchair. “Powerlessness. Utter powerlessness. At first I was angry, then I learned to live with it,” Houben said, punching the message into the screen in an interview broadcast Monday on the Belgian network RTBF. He has called his rescue his “renaissance.” Over the years, Houben’s parents refused to accept the word of his doctors, firmly believing their son knew what was happening around him. His mother, Fina, said they gave no thought to letting him die. She was vindicated when the breakthrough came. “At that moment, you think: ‘Oh my God. See, now you know.’ I was always convinced,” Fina Houben said in a telephone interview with The Associated Press. The discovery took place three years ago but only recently came to light after a study was published on the misdiagnosis of people with consciousness disorders. While a 23-year error is highly unusual, the wrong diagnosis of patients with consciousness disorders is far too common, according to the study, which was led by Steven Laureys of Belgium’s Coma Science Group. “Despite the importance of diagnostic accuracy, the rate of misdiagnosis of vegetative state has not substantially changed in the past 15 years,” the study said. Back then, studies found that “up to 43 percent of patients with disorders of consciousness are erroneously assigned a diagnosis of vegetative state.” The issue is fraught with difficult medical and ethical questions. Patients diagnosed as being in vegetative states with no hope of recovery sometimes are allowed to die, as was done in 2005 with Terri Schiavo, a severely brain-damaged Florida woman who was at the center of the biggest right-to-die case in U.S. history. Schiavo’s feeding tube was removed and she died March 31, 2005. Rom Houben was injured in an auto accident in 1983 when he was 20. Doctors said he fell into a coma at first, then went into a vegetative state. A coma is a state of unconsciousness in which the eyes are closed and the patient cannot be roused. A vegetative state is a condition in which the eyes are open and can move. The patient has periods of sleep and periods of wakefulness but remains unconscious and cannot reason or respond. During Houben’s two lost decades, his eyesight was poor, but the experts say he could hear doctors, nurses and visitors to his bedside and feel the touch of a relative. Houben said that during that time he heard his father had died, but he was unable to show any emotion. Over the years, a skeptical Fina Houben took her son to the United States five times for tests. More searching got her in touch with Laureys, who ordered a PET scan. “We saw his brain was almost normal,” said neuropsychologist Audrey Vanhaudenhuyse, who has worked three years with Rom Houben. The family and doctors then tried to establish communication. A breakthrough came when Houben was able to indicate “yes” or “no” by slightly moving his foot to push a computer device placed there by Laureys’ team. Then came the spelling of words using the touch screen. Houben’s condition has since been diagnosed as a form of “locked-in syndrome,” in which people are unable to speak or move but can think and reason. “You have to imagine yourself lying in bed wanting to speak and move but unable to do so — while in your head you are OK,” Vanhaudenhuyse said. “It was extremely difficult for him and he showed a lot of anger, which is normal since he was very frustrated.” With so much to say after suffering for so long in silence, Houben is writing a book. “He lives from day to day,” Fina Houben, 73, said of her son. “He can be funny and happy,” but is also given to black humor. Recently, Houben went to his father’s grave for the planting of a tree. “A letter he wrote was lowered into the grave through a tube,” Fina Houben said. “He closed his eyes for half an hour, because he cannot cry.” There is little hope that Rom Houben’s physical condition will improve, but his mother said she refuses to give up. “We continue to search and search. For 26 years already.”

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