Tourette Syndrome THE HISTORY OF TS TREATMENT
Part 1-The (Not So) Good Old Days
I have been procrastinating as I undertake the project of writing about Tourette Syndrome, this neurological genetic disorder has controlled my life from the age of five years, and when I consciously think of it the symptoms automatically come to the surface. However, The Spring edition of the Tourette Syndrome Newsletter, Volume 29 - Number 4 has included a fairly good history in its content, so I think this is as good a time as any to address the subject. Much of the text I have copied word for word, and I in no way intend for this to be interpreted as my own writing. I will try to distinguish between their story and that of mine.
A Short History
Most histories of TS begin in 1825 with Jean Itard's descriptions of the Marquise de Dampierre. The then twenty-six year old noblewoman was notorious for shouting inappropriate or obscene words in the middle of conversations. Itard, who was the chief physician at I'Instution Royale Sourds-Muets in Paris, vividly described her inability to control these outbursts. In 1885, one year after the Marquise's death, Georges Gilles de la Tourette used Itard's descriptions of the Marquise's symptoms as a case study for his paper on what he termed the "maladie de tic." The disorder was named for Tourette.
There were, of course, many people with TS before the Marquise. The confusing nature of this neurological disorder---the range of tics, the waxing and waning of symptoms and associated disorders-Obsessive Compulsive Disorders (OCD), Attention Deficit Disorder (ADD), and Attention Deficit Hyperactivity Disorder (ADHD)-made TS a mystery to both doctors and patients. Individuals with TS symptoms were mistakenly considered insane, possessed by demons, weak-willed or simply eccentric. Some of them thrived but others suffered at the hands of misguided health care professionals. (No Shit!)
The misdiagnosis of people with TS has continued until relatively recently. Dr. Ruth Bruun (former Chair, TSA Medical Advisory Board) comments, "I've had some older TS patients who were diagnosed as schizophrenic and spent some time in mental intuitions. I'd assume that in early times there were more of them." In the past, some people with TS were confined to mental institutions or subjected to exorcisms and other strange treatments. "I wouldn't be at all surprised if some people had been persecuted as witches," Dr. Bruun speculated. She confirms how far we've come in both the treatment of people with TS and in the understanding the nature and variety of the human condition. "Well it's about Damned Time!"
Historical Figures with TS
Although it is difficult to look back and diagnose historical figures, contemporary descriptions of both composer Wolfgang Amadeus Mozart and the writer Samuel Johnson (best known for his Dictionary of the English Language published in 1775 and as a famous raconteur) lead some people familiar with TS to conclude that both men had Tourette syndrome. It is far more likely in the case of Johnson.
James Boswell met Samuel Johnson and traveled with him in 1773. Boswell then wrote a biography of his friend entitled "Life of Samuel Johnson" in 1791 that included various descriptions of what he viewed as eccentric behaviors.
"While talking or even musing as he sat in his chair, he commonly held his head to one side towards his right shoulder, and shook it in a tremulous manner, moving his body backwards and forwards, and rubbing his left knee in the same direction, with the palm of his hand in the intervals of articulating he made various sounds with his mouth, sometimes as if ruminating, or what is called chewing the cud, sometimes giving a half whistle, sometimes making his tongue play backwards from the roof of his mouth, as if clucking like a hen, and sometimes protruding it against his upper gums in front, as if producing quickly under his breath, 'too, too, too': all this accompanies sometimes a thoughtful look, but more frequently a smile"
"Son of a Bitch," I will need to take a break here for about an hour, believe me I am not smiling at the moment!" Now you can see why I have been reticent to copy this article; it drives me crazy! It has taken me at least 30 minutes to copy the above paragraph.
It is important to note that even while recording Johnson's unusual symptoms, Boswell professed his affection and admiration for the writer. Johnson was as popular figure of his day and his famous quips remain quotable to this day.
Treatments and Mistreatments
Everything from restraints and arsenic were used as treatments for TS-related tics. The recommended treatments-and mistreatments-often reflect the current state of scientific/medical thinking at this time. The natural waxing and waning of TS symptoms often gave well-meaning physicians the impression that their "cures" were effective. When one treatment "failed," another was tried and another and another.
"They literally tried everything," states Dr. Bruun describing relatively recent historical treatment methods, "including hydrotherapy and shock therapy. Even now, we're going to look back on some of the things we've done and we think, 'that was crazy,' that it didn't really work. One of the sad things about our early use of Haldol was that it made many people depressed while we were saying it was wonderful. We didn't make the connection between high doses of haloperidol and depression at the time."
In his book, "A Cursing Brain? The Histories of Tourette Syndrome," Howard I. Kushner (Professor of the History of Medicine at San Diego State University) describes the many ebbs and flows of how TS was perceived at different times with divergent philosophical approaches to medical conditions. Some may seem cruel or at best misguided, while others would be comical if people had not endured them with the hope of a cure. "Believe me, I would have tried anything to cure this Curse/Gift"
Henry Miege, famous for his 1902 co-authorship with E. Feindel of "Les Tics et leur Traitment." The standard text on tic disorders for the first half of the twentieth century, believed that his "mirror drill" would help a patient control his tics. "Yeah Right"
The patient was instructed to watch himself in a mirror. If he saw himself tic, he was to repeat the tic several times. The voluntary repetition of the tic was supposed to help him become conscious of them-and therefore able to control them. Miege reported that his patient's friends had further aided the individual's self-confidence. "Now that is pretty God Damned Stupid!"
Looking back, it is easy to conclude that Miege's patients either experienced a natural waning of his symptoms or learned to repress his tics more effectively by observing them in the mirror. It is also a safe bet that his increased self-confidence did indeed come from having friends who encouraged and accepted him. "If this in indeed the case, I wonder how much each friend was paid in cash to act as though they accepted his patients?" "Experience has taught me to find another way in which to manifest the symptoms!"
Like Samuel Johnson and the Marquis de Dampierre (described as charming and accepted in society despite her coprolalia). Individuals who aren't ostracized for their symptoms have always fared better than those who were. "Thank God I did not grow up here in the Bible Belt!"
Dr. James Leckman of the Yale Child Study Center, states that the same principles apply to his contemporary patients. "Please note that the above referenced center does not exist in the Bible Belt" "Please note that the so called "Bible Belt" begins north of I-10 and extends as far north as I-70." Now back to the article. "The more I work in this area, the less the tics seem to be a problem compared to the huge post-traumatic issue that occurs when people have been punished for having them. If we are really going to help people, we need to help them build on their strengths and abilities and not focus on their weaknesses." The doctor encourages his patients to cultivate success in their endeavors. Just as Mozart's talent triumphed and Johnson's charm as a storyteller made him a popular figure, physicians such as Dr. Leckman recognize the damage done when people are punished for having tics.
Of course, punishment in many forms including restraint was used to treat people with TS in the past. In 1896 J.C. Wilson, a Philadelphia pediatrician treated his fifteen-year old patient with sedatives and a milk diet. When that failed, he concluded that the boy's tics were related to his sexual desires. His first step was a circumcision and when that failed, he ordered his patient's hands tied in splints at night. When the boy's mother heard of this "treatment," she took her son out of the doctor's care. In his book, Kushner describes in detail this and many other misguided "treatments" for TS.
"Let me just interject right here that if I were the 15 year old patient being splinted by J.C. Wilson, he would have needed a heard of Gorillas to accomplish this feat!"
Not all the treatments that seem to us today to be cruel, odd or dangerous were used in the 19th century. In the late 1950s, surgery was viewed as a viable treatment for conditions that did not respond to other therapies. Some individuals with coprolalia and other TS symptoms were given lobotomies. "Just think, if our parents had been wealthy, Dr. Stirling and myself may have had lobotomies; the irony here is that he is a surgeon!"
Thankfully, lobotomies, milk diets and physical restraints, are no longer considered viable treatments for people with TS. But some of the 19th century interventions including breathing techniques sound curiously like contemporary relaxation exercises that many people with TS find helpful in controlling their tics.
Tourette Syndrome, page 1 | Tourette Syndrome, page 2
