Dear members of associations for Tourette syndrome:
Please see enclosed program and registration form for the InternationalScientific Symposium on Tourette Syndrome, June 21. - 23. 2007Lillehammer, Norway. We would appreciate if you could update your website andnewsletters with this information.Online registration and more information on hotel, social activities,speaker and poster presentations can be found at our website.Welcome to Lillehammer in June!Feel free to forward this e-mail to professionals working with Tourettesyndrome in your country,
Best regards,
Stale Tvete Vollan
Adviser in communication and member of the organizing committee,
National Resource Center for AD/HD,
Tourette Syndrome and Narcolepsy &International Scientific Symposium on Tourette Syndrome in Lillehammer
Ulleval University Hospital
NO-0407 OSLO, NORWAY
Office: +47 23 01 60 30Fax: +47 23 01 60
E-mail: stale@nasjkomp.noHELPFUL LINKS:
*All about the International Scientific Symposium on TS can be found here http://www.tourette2007.net/
6/11/2007
The Pathophysiology of Tourette Syndrome
When we talk about the pathophysiology of a certain disease, we mean to say the study of abnormal functions in the body and how disease processes work. For Tourette syndrome, looking at the structures of the brain and other important chemicals that said to be responsible for the disorder is also a consequential review.
It is widely reported that the pathophysiology for Tourette syndrome had not been fully understood. Dr. Kirk Frey and Dr. Roger Albin presented that there were only limited insights as to what abnormalities could have been underlying Tourette syndrome when traditional neuroimaging techniques were used. They also said that because there were only a few persons diagnosed with Tourette syndrome who die early in life, they were limited to a few post-mortem brains to study and that these brains came mostly from adults. Nevertheless, most researches point out to neurotransmitters in the brain, their circuitry and a few structures that are responsible for the make up of Tourette syndrome.
Considering neurotransmitters in the brain, researches say that Tourette syndrome is a result from an abnormal activity in a chemical in the brain called dopamine. Neuroimaging studies revealed that dopamine is produced excessively in persons with the disorder. Dopamine is a kind of neurotransmitter in the brain. Aside from norepinephrine, dopamine is a catecholamine responsible for controlling movements and regulating hormonal responses. Dopamine is also the one responsible for psychiatric symptoms such as psychosis.
There are three specific circuits it undergoes. First, the regulation of bodily movements. Dopamine is involved in the production of tics in a person with Tourette syndrome. The excessive amount of dopamine that regulates in the structures of the brain, is said to be one of the emerging causes of the reproduction of the repetitive, uncontrollable body movements. Whereas in a person who exhibits rigidity in muscle movements or there is difficulty in moving is equated to practically absence of dopamine circulating.
The second circuitry is for emotion and cognition. Abnormalities in this system of circuitry are the one responsible for the production of psychotic manifestations.
The third is for the regulation of the endocrine system. Its primary action for this organ is to direct the release of hormones into the bloodstream.
Information about dopamine is essential in the understanding of where it actually goes wrong in the brain in the case of Tourette syndrome. Knowing that its excessive reproduction is important in connecting the occurence of tics of people with Tourette syndrome is essential as well. The circuitry passes through deep within the brain in a structure called the basal ganglia. But because all the circuits inside the brain happen simultaneously, it also involves not only the basal ganglia but also some other parts of the brain such as the cortical, subcortical regions of the brain, the thalamus and frontal cortex, all are located deep within the fore brain. Each structure has its own function in the transmission of the neurotransmitters in the brain. All is described to be but one whole operating system. In an article written by Steve Olson, he mentioned that the operating system described in a person with Tourette syndrome, according to Dr. Jonathan Mink, a neuroscientist in the University of Rochester Medical Center in New York, is in a way buggy. This description again goes back to studies from neuroimaging techniques that demonstrated abnormality in dopamine release, dopamine reception and pathways involved in the transmission of this neurotransmitter.
It is widely reported that the pathophysiology for Tourette syndrome had not been fully understood. Dr. Kirk Frey and Dr. Roger Albin presented that there were only limited insights as to what abnormalities could have been underlying Tourette syndrome when traditional neuroimaging techniques were used. They also said that because there were only a few persons diagnosed with Tourette syndrome who die early in life, they were limited to a few post-mortem brains to study and that these brains came mostly from adults. Nevertheless, most researches point out to neurotransmitters in the brain, their circuitry and a few structures that are responsible for the make up of Tourette syndrome.
Considering neurotransmitters in the brain, researches say that Tourette syndrome is a result from an abnormal activity in a chemical in the brain called dopamine. Neuroimaging studies revealed that dopamine is produced excessively in persons with the disorder. Dopamine is a kind of neurotransmitter in the brain. Aside from norepinephrine, dopamine is a catecholamine responsible for controlling movements and regulating hormonal responses. Dopamine is also the one responsible for psychiatric symptoms such as psychosis.
There are three specific circuits it undergoes. First, the regulation of bodily movements. Dopamine is involved in the production of tics in a person with Tourette syndrome. The excessive amount of dopamine that regulates in the structures of the brain, is said to be one of the emerging causes of the reproduction of the repetitive, uncontrollable body movements. Whereas in a person who exhibits rigidity in muscle movements or there is difficulty in moving is equated to practically absence of dopamine circulating.
The second circuitry is for emotion and cognition. Abnormalities in this system of circuitry are the one responsible for the production of psychotic manifestations.
The third is for the regulation of the endocrine system. Its primary action for this organ is to direct the release of hormones into the bloodstream.
Information about dopamine is essential in the understanding of where it actually goes wrong in the brain in the case of Tourette syndrome. Knowing that its excessive reproduction is important in connecting the occurence of tics of people with Tourette syndrome is essential as well. The circuitry passes through deep within the brain in a structure called the basal ganglia. But because all the circuits inside the brain happen simultaneously, it also involves not only the basal ganglia but also some other parts of the brain such as the cortical, subcortical regions of the brain, the thalamus and frontal cortex, all are located deep within the fore brain. Each structure has its own function in the transmission of the neurotransmitters in the brain. All is described to be but one whole operating system. In an article written by Steve Olson, he mentioned that the operating system described in a person with Tourette syndrome, according to Dr. Jonathan Mink, a neuroscientist in the University of Rochester Medical Center in New York, is in a way buggy. This description again goes back to studies from neuroimaging techniques that demonstrated abnormality in dopamine release, dopamine reception and pathways involved in the transmission of this neurotransmitter.
The Man Behind the Eponym Tourette Syndrome
Georges Albert Eduardo Brutus Gilles de la Tourette, a French neurologist was born on October 30, 1857 in a place called Saint-Gervais-les-Trois-Clochers in France. Gilles was the eldest among four children. There was no enough documentation to describe how Gilles was in his early childhood. But reports said that Gilles started his education where he was already known to be an exceptionally talented young student.In as early as 16 years of age, Gilles started his medical education in Poitiers, France. He continued this in Paris in Salpêtrière Hospital where he became a student, secretary and in-house physician of his professor and mentor, Jean- Martin Charcot. Charcot was impressed by Gille’s intelligence so he helped Gilles in so many ways. Since 1884, Gilles had been exposed to Charcot’s work. And at this time, Charcot had begun his studies about hypnosis and hysteria, a complex neurosis that can take in many forms (J.P Chaplin,1985). Charcot used the technique of hypnosis to study the symptoms of his patients. Gilles soon became the consultant physician of Charcot and his primary work for Charcot was to instruct and prepare the patients for public presentations. Gilles’ interest in the subject of neurology grew more and more and had been even influenced by Charcot so much that Gilles started to publish articles about Charcot’s field of interest which were hypnosis and hysteria, one of which is a documentation of Charcot’s theories. Charcot’s marked success also became one huge accomplishment for Gilles as he became a contributor to Charcot’s work that became widely known throughout Europe. Sigmund Freud even became a part of his sector at that time.
1885, when Gilles became the permanent instructor of forensic medicine, this year also became the start of the research for Tourette syndrome.
Early encounters with Tourette syndrome had been reported in 1825 by Itard who was also a French physician and educationalist. He reported a very peculiar behavior of a French woman called the Marquise de Dampière. The behavior included strange body movements accompanied by echolalia or the repetition of words or phrases (J.P. Chaplin, 1985) and coprolalia or obsessive use of obscene words (J.P. Chaplin, 1985). After Itard’s death, 60 years later, Gilles de la Tourette published a study called “Étude sur une affection nerveuse caracterisée par l'incoordination motrice accompagnée d'écholalie et de coprolalie' or the disorder of the nervous system characterized by motor incoordination in combination with echolalia and coprolalia according to the archives of neurology in France. This was the publication that documented the behavior of Marquise de Dampière and eight other similar cases which he called 'Maladie des Tics'. Because of his careful study of motor disorders since 1881, he was the first one to understand the connections between the various manifestations of the symptoms described in his publication. And in honor of this understanding, Charcot who was the director of the Salpêtrière Hospital, named the disorder after Gilles and so the eponym Gilles de la Tourette came about.
After his published work in 1885 about Tourette syndrome, he was awarded Godard Award the next year because of his thesis that found a neurological diagnosis by analyzing the patient’s footprints.
The following years became much more satisfying for Dr. Tourette when Charcot appointed him to be the chief physician. His duties included developing new therapies and making them suitable for practice, teaching medical students, managing the wards in the hospital and publishing articles in the medical journals. He also had various interests beyond the medical field when he became the literary critic of a weekly newspaper. Gilles undoubtedly had very fruitful practice as a doctor in neurology but settling down and having a family of his own were not far away from his plans. During the same year, he was married to his cousin who was ten years younger than him and with whom he had four children, two sons and two daughters.
Dr. Gilles de la Tourette could have gone a lot better in terms of his practice and contributions as a neurologist in France. But because of his reported shortcomings, the years thereafter provided no significant accomplishments for Dr. Tourette as he became so intensely absorb in only the things he was interested in specifically neurological disorders that lead him to overlook at some of the other important things to consider in his practice like neurological pathologies and experiences in other clinical cases which are also pertinent to his practice. Historical reports say that he became so critical which prevented him from gaining friends over the years. Despite this, he continued his work as a regular lecturer and chief physician under Charcot in the Salpêtrière Hospital.
In 1893 Gilles had experienced the most poignant times of his life when his son died because of meningitis followed by his mentor Jean- Martin Charcot to acute lung edema or a disease marked by excessive fluid volume in the lungs. Subsequently, during the same year Gilles was shot at the back of his head by a former female patient at Salpêtrière who alleged that Gilles had hypnotized her which caused her to lose her mental state. This was investigated and it was found out that the woman had been suffering from what we now call paranoid schizophrenia. It was then reported that hypnosis was not the cause of her loose mental state. The woman was treated at St. Anne in Paris and died in the hospital of St. Rémy at the age of 92. With Gilles’ wound at the back of the head, it was found out that it was only superficial. A surgeon by the name of Pierre Delbet treated him and Dr. Tourette recovered completely from it.
After that terrible year, Gilles de la Tourette continued his work in neurology and published two more volumes about hysteria. And in 1899, he changed his assumption that Tourette syndrome would result in mental illness in a person’s later life. The change in opinion was influenced by an associate named Louis Guinon. With Gilles’ determination and perseverance that despite his shortcomings with his behavior, he once again proved to other medical professionals that he was really an extraordinary and very talented physician. More years added to his accomplishments when he was appointed chief official physician of the world exhibition in Paris 1900 and was awarded “Honorary Officer of the Legion”.
Later on, Gilles’ health declined. In the year 1901, his health was forced to be criticized in the hospital. Although, historical resources knew little about what could really be Dr. Tourette’s disease, his disease had caused him to be more and more incoherent which left him psychotic for the remaining years of his life. Later on, neurological examinations revealed a diagnosis of paretic neurosyphilis, also known as general paresis or a disease of the central nervous system that begins with gradual loss of cognitive functions that leads to personality changes and eventually dementia. The disease involved many psychotic manifestations. He died at the age of 46 and was remembered by fellow colleagues as one of the most talented and assiduous physicians in Salpêtrière Hospital.With the development of Tourette syndrome later after his death, there were only 50 more cases of the disorder being documented between the years 1885- 1965. Because of this, physicians became skeptical of the disorder’s existence. But in 1978, there were four scientists in New York who reported 485 cases of Tourette Syndrome which they called “Gilles de la Tourette Syndrome”. Included in the study were intensive descriptions of 250 examination results and very detailed studies of 145 patients. Because of this breakthrough in Tourette syndrome research, interests concerning the disorder were raised up again and Hermann Krämer even mentioned that the new American behavioral neurologists embraced Dr. Gilles de la Tourette works and saw that the paradigm in this illness is the connection between the movement and the emotion.
6/06/2007
Call for Filipino Research Participants: Tourette Syndrome
Title: Group Counseling for Filipinos Diagnosed with Tourette Syndrome
Research is under the University of the Philippines, College of Education, Diliman, Quezon City
Participant Eligibility:
1. Must be diagnosed with Tourette Syndrome
2. Absence or mild co-morbid disorder will be accepted
3. 18-35 years of age
4. If minor and interested, please secure consent from parents
5. All participants will have to secure certification from a doctor that you are safe to undergo a research process
Being accepted in the research means that you will have to participate from the beginning up to the end of the counseling sessions. There will only be 10 counseling sessions. The exact date and time will be convenient to all participants. The sessions can be done everyday or 2x a week, depending on the availability of all the participants. The sessions will only be conducted for roughly 5 hours maximum.
Benefits from the Research:
1. You will be a part of the first Tourette syndrome research in the Philippines
2. You will discover your own capabilities in coping with the disorder better
3. You will meet other Filipinos diagnosed with Tourette syndrome and be able to share and learn from yours and other people's experiences
5. You will contribute to the literature of Tourette syndrome in the Philippines and in the world.
IF YOU ARE INTERESTED, please contact me immediately.
Research is under the University of the Philippines, College of Education, Diliman, Quezon City
Participant Eligibility:
1. Must be diagnosed with Tourette Syndrome
2. Absence or mild co-morbid disorder will be accepted
3. 18-35 years of age
4. If minor and interested, please secure consent from parents
5. All participants will have to secure certification from a doctor that you are safe to undergo a research process
Being accepted in the research means that you will have to participate from the beginning up to the end of the counseling sessions. There will only be 10 counseling sessions. The exact date and time will be convenient to all participants. The sessions can be done everyday or 2x a week, depending on the availability of all the participants. The sessions will only be conducted for roughly 5 hours maximum.
Benefits from the Research:
1. You will be a part of the first Tourette syndrome research in the Philippines
2. You will discover your own capabilities in coping with the disorder better
3. You will meet other Filipinos diagnosed with Tourette syndrome and be able to share and learn from yours and other people's experiences
5. You will contribute to the literature of Tourette syndrome in the Philippines and in the world.
IF YOU ARE INTERESTED, please contact me immediately.
6/05/2007
Twitch and Shout Lay Forum: A Closer Look At Tourette Syndrome
The first Tourette Syndrome lay forum was held last March 31, 2007 at the Cathedral Heights Building Complex St. Luke’s Medical Center. It was indeed a very successful forum wherein families, pre-school and sped teachers, doctors, counselors, students, and patients who are diagnosed with Tourette syndrome came altogether for the forum. The forum was facilitated by The Movement Disorder Center of St. Luke’s and the Philippine Tourette Syndrome Association. Being a co-founding member of the organization, I am honored to be one of the emcees of the said event. The registration was facilitated by Dr. Toom Vatanagul. Invocation was made by Dr. Judy Sevilla. Dr. Janet Santiago sang the national anthem. Opening remarks was given by Dr. Joven Cuanang. The first testimonial was given by a TS advocate and an industrial specialist, Marlon Barnuevo. The second testimonial was given by a mother of a 12 year old child diagnosed with TS, Ms. Obie Casimiro. Lectures were given by Dr. Dominic Jamora and Dr. Bernadette Arcena. We also had an open forum where participant asked questions about TS. The resource persons for the open forum were the doctors from the Movement Disorder Center headed by Dr. Leonardo Fugoso. The closing remark was also given by Dr. Fugoso. After that a little meeting about the support group formation was facilitated by Dr. Vatanagul, myself, and Marlon Barnuevo.
We had a number of participants who became the initial members of the support group for PTSA. Now that the support group is already formed, the by-laws, mission and vision are still going to be finalized. We have three working objectives for the support group (1) support system for families, patients and significant others, (2) educate the public about Tourette syndrome , (3) advocates for TS patients and families. We still have a long way to go with the sustainability of the support group, but with your support nothing is impossible.
We had a number of participants who became the initial members of the support group for PTSA. Now that the support group is already formed, the by-laws, mission and vision are still going to be finalized. We have three working objectives for the support group (1) support system for families, patients and significant others, (2) educate the public about Tourette syndrome , (3) advocates for TS patients and families. We still have a long way to go with the sustainability of the support group, but with your support nothing is impossible.
Educational Issues and Tourette Syndrome
Issues in education may have the most impact on somebody who has Tourettes than any other issues for that matter, considering a country like the Philippines, which has value so much for education. Creating an environment suitable for the needs of the person with TS can make the person grow and be the best they can be. Aside from that, the understanding that will eventually grow from that environment will be most healthy for their growth as well. This is very consequential because if educational issues are not addressed, they will be susceptible to maltreatment, harassment, poor social skills, academic underachievement and low self- esteem to name a few.
After diagnosis of the person, the parent may feel torn between letting the school know about the disorder and ignoring it and try to let the person be mainstreamed without any special notices. For the parent, it is imperative for you to let the school know about the disorder. While there may be so many information to tell and stigma everywhere things will change for the better in the long run as more and more people are becoming aware of it.
For one thing we might want to consider a healthy parent- teacher relationship. For a school that does inclusion of people with special needs, the parent will not have a hard time informing the school about their child who has TS. Commonly, they already have a program for those people. But for a school that is new to the whole matter of Tourette Syndrome, then everything would first come from the parents. It is often very helpful if teachers are told in advance what might be the expectations——— the problems that the child is facing. A one- on-one meeting with the teacher is almost always necessary. Although, they can relay the information from one teacher to another, it is better to have a sit- down meeting with them so they can fully understand what your child is going through. Remember, it is your child that we’re talking here so in order to make room for further growth and development we should first inform them of the real score behind your child’s condition. With the information that the teacher will be getting, this will serve as a basis on how the teacher can handle a child with TS—- like being more patient when the child gets to be a little naughty, explaining to other students what’s going on, understanding that a score on a test might be somewhat affected by the disorder that the child has and so on and so forth. The teacher can also help in monitoring the child in terms of peer relationships, attitude towards work and his environment, the child’s conduct and basically the child’s progress. As a parent, it is consequential to ask the teacher what the progress are and be able to evaluate what else needs to be done. For the sake of the child, always be constructive and avoid arguments and keep lines of communication always open. We must remember that no two persons deal with the situation the same way.
What are actually the information that teachers need to know? First of all, inform them the symptoms of Tourette especially the nature of tics. This will help them understand that the child are not doing this to get attention or just to simply annoy the teacher, it is central to emphasize that the child cannot control his behavior and most of the time needs medication to lessen the occurrence of tics. Sometimes, if teachers are not knowledgeable they get to be annoyed or even offended by the tics. There can be possibilities that the child will be reprimanded for doing so. Make the teacher aware that the tics can usually occur mostly when the child is under stress. Having a quiz, recitations in front of the class, board games etc. can be very stressful to the child. These experiences may cause the child to exhibit more pronounced tics. Making the child a center of attention is not going to help at all. The teacher should always talk to the child privately and ask him what could be the most comfortable thing for him to do and if there’s anything the teacher can do to lessen his stress. And as what I’ve said before, it is often helpful to let the other students be aware of Tourette Syndrome. A small class presentation may be done.
Taking into account the co-morbid disorders that are associated with TS can also be helpful if informed. In this way, the teacher will be able to compliment his style of teaching to a child with TS. Individualization is very important. Taking for example a hyperactive child needs more clear and simple classroom rules that most students. Another would be allowing the child to have extra time to complete his work. No matter what the style is the most important thing is careful and consistent provisions of these rules and should be individualized to suit a child with TS. There also has to be continuous support. The child has to be motivated. Careful modifications should also be done. And eventually evaluation for the purpose of finding out effective techniques useful for the child and later on changing and replacing the ones not effective at all.
Original article posted on March 10, 2007
Last Update: June, 2007
After diagnosis of the person, the parent may feel torn between letting the school know about the disorder and ignoring it and try to let the person be mainstreamed without any special notices. For the parent, it is imperative for you to let the school know about the disorder. While there may be so many information to tell and stigma everywhere things will change for the better in the long run as more and more people are becoming aware of it.
For one thing we might want to consider a healthy parent- teacher relationship. For a school that does inclusion of people with special needs, the parent will not have a hard time informing the school about their child who has TS. Commonly, they already have a program for those people. But for a school that is new to the whole matter of Tourette Syndrome, then everything would first come from the parents. It is often very helpful if teachers are told in advance what might be the expectations——— the problems that the child is facing. A one- on-one meeting with the teacher is almost always necessary. Although, they can relay the information from one teacher to another, it is better to have a sit- down meeting with them so they can fully understand what your child is going through. Remember, it is your child that we’re talking here so in order to make room for further growth and development we should first inform them of the real score behind your child’s condition. With the information that the teacher will be getting, this will serve as a basis on how the teacher can handle a child with TS—- like being more patient when the child gets to be a little naughty, explaining to other students what’s going on, understanding that a score on a test might be somewhat affected by the disorder that the child has and so on and so forth. The teacher can also help in monitoring the child in terms of peer relationships, attitude towards work and his environment, the child’s conduct and basically the child’s progress. As a parent, it is consequential to ask the teacher what the progress are and be able to evaluate what else needs to be done. For the sake of the child, always be constructive and avoid arguments and keep lines of communication always open. We must remember that no two persons deal with the situation the same way.
What are actually the information that teachers need to know? First of all, inform them the symptoms of Tourette especially the nature of tics. This will help them understand that the child are not doing this to get attention or just to simply annoy the teacher, it is central to emphasize that the child cannot control his behavior and most of the time needs medication to lessen the occurrence of tics. Sometimes, if teachers are not knowledgeable they get to be annoyed or even offended by the tics. There can be possibilities that the child will be reprimanded for doing so. Make the teacher aware that the tics can usually occur mostly when the child is under stress. Having a quiz, recitations in front of the class, board games etc. can be very stressful to the child. These experiences may cause the child to exhibit more pronounced tics. Making the child a center of attention is not going to help at all. The teacher should always talk to the child privately and ask him what could be the most comfortable thing for him to do and if there’s anything the teacher can do to lessen his stress. And as what I’ve said before, it is often helpful to let the other students be aware of Tourette Syndrome. A small class presentation may be done.
Taking into account the co-morbid disorders that are associated with TS can also be helpful if informed. In this way, the teacher will be able to compliment his style of teaching to a child with TS. Individualization is very important. Taking for example a hyperactive child needs more clear and simple classroom rules that most students. Another would be allowing the child to have extra time to complete his work. No matter what the style is the most important thing is careful and consistent provisions of these rules and should be individualized to suit a child with TS. There also has to be continuous support. The child has to be motivated. Careful modifications should also be done. And eventually evaluation for the purpose of finding out effective techniques useful for the child and later on changing and replacing the ones not effective at all.
Original article posted on March 10, 2007
Last Update: June, 2007
I Have Tourettes But Tourettes Doesn't Have Me
This is the popular video about Tourette that won the Emmys. This is a good watch! Enjoy!
Icy Sparks
It's been a while since I entered an article here. But this entry sure is worth it. A friend introduced me to a novel called Icy Sparks by Gwyn Hyman Rubio. It's a book about a child with undiagnosed Tourette Syndrome. It's also included as one of the most popular books in the Oprah book club. I recommend for parents to read this one. Well not only parents but everybody for that matter
"ICY SPARKS is the sad, funny, and transcendent tale of a young girl growing up in the mountains of Eastern Kentucky during the 1950s. At the age of ten, Icy, a bright, curious child orphaned as a baby but raised by adoring grandparents, begins to have strange experiences. Try as she might, her "secrets"–verbal croaks, groans, and physical spasms–keep afflicting her. As an adult, she will find out she has Tourette Syndrome, a rare neurological disorder, but for years her behavior is the source of mystery, confusion, and deep humiliation."–from Gwyn' website.
Narrated by a grown-up Icy, the book chronicles a difficult, but ultimately hilarious and heartwarming journey, from her first spasms to her self-acceptance as a young woman. Curious about life beyond the hills, talented, and energetic, Icy learns to cut through all barriers–physical, mental, and spiritual–in order to find community and acceptance.(source: gwyn's website)
ABOUT THE AUTHOR
Born in Macon, Georgia, to Mac Hyman and Gwendolyn Holt Hyman, Gwyn grew up in south Georgia in the small town of Cordele, not far from Plains. Her father was a writer himself and published the bestseller No Time for Sergeants in 1954 when he was only 31 years old. It was turned into a popular play and film, starring Andy Griffith.
Upon graduating from Florida State University with a B.A. in English, Gwyn joined the Peace Corps serving in Costa Rica and working as a preschool program coordinator and teacher in a village, without running water or electricity, near the Panamanian border. She married her husband, Angel, also a volunteer, six months after her arrival. They have been married now for 30 years.
Gwyn’s youth was spent frantically running from her father’s vocation–seeking any other occupation–because she felt the stress of writing had precipitated his early death of a heart attack at the age of 39. Throughout the 1970s, one job followed another until the couple wound up in 1980 in Berea, Kentucky.
In 1983 Gwyn could not longer run away from writing, from the realization that this was what she was meant to do. Therefore, she applied and was accepted into the MFA Program for Creative Writing at Warren Wilson College in North Carolina. Not until her graduation in 1986 did she dedicate herself completely to writing.
Gwyn’s collection of short stories, Sharing Power, was nominated for a Pushcart Press Editors’ Book Award. Her short fiction has been published and anthologized around the country. Her short story “Little Saint” received the Cecil Hackney Literary Award for first prize in the National Short Story Competition and later appeared in Prairie Schooner. She has received grants from the Kentucky Arts Council and from the Kentucky Foundation for Women. In July, 1998, her first novel was published by Viking/Penguin. Highlighted in Time Magazine by Barnes & Noble, Icy Sparks was one of several novels chosen to represent “The Next Wave of Great Literary Voices” in the Discover Great New Writers program.
Gwyn and her husband have lived in Kentucky for over 20 years. Most of the time, they have lived in the foothills of the Appalachian Mountains in the small town of Berea. In 2001 they moved to Versailles, Kentucky.—taken from http://www.gwynrubio.com/bio.htm
Creative Visual Presentation of Tourette Syndrome
Coprolalia in Tourette Syndrome
6/02/2007
Insights on Group Theories as Basis for the Development of Support Group for Tourette Syndrome
I wrote this article to let my readers know that there is a scientific basis for forming support groups specifically for Tourette Syndrome. This is especially for parents who are not aware of group developments and/ or group dynamics used in the formation of small or large groups. It is hard to form groups without even laying primarily what your motives are. I think by now everybody who’s been accessing my blog already knows my purpose for my advocacy or better yet my motivation for all of these. Laying out the theories is just as important.
The importance of groups can be rooted in our need to belong. Belongingness together with love is our third hierarchy of needs according to Maslow. We always been and we always will be a member of a group. Being in them makes groups one of the most important factors in our lives. Oftentimes, our membership in a group relates to our identity. It is how we introduce ourselves with a lot of people.
The impact of groups in our society is also just as important. According to David and Frank Johnson, as the effectiveness of our group goes, so does the quality of life. I have great concern to strengthen the support group for TS, which is to just increase productivity in the advocacy that I’m making and in the long run increase productivity from the activities that the support group will be having in the future. Another is the knowledge of group dynamics which makes formation of group predominant not only to the quality of life, but also to effective businesses, education, maintaining a doable family and long term maintenance of psychological health.
The knowledge for group dynamics is an excellent tool in order to understand a little bit more how group works. But of course, as we all know our world is always engaged in reforms so fast that groups are also considered to be more and more complex and difficult to understand. The complexity of group dynamics in TS goes beyond understanding and application. We might just ask ourselves, if forming a support group for TS can be helpful in performing a task, how come others can perform well if they are alone? Do these people seek relationship with other people? Or do they avoid it? Do they really want to be a part of a support group? Or do they enjoy being atypical from others? Well, even if you still want to add to those questions that make groups even more complex it is still very vital to one’s own function as an individual.
The essence of group dynamics in the formation of support group for TS is for one thing about interpersonal relationships. I have talked in my other articles about how a person with TS can improve by working on himself first above all others. Now, reaching out to others also contributes to the development of one’s own function not only as an individual but an individual in groups. A group is never a group if nobody’s interacting after all. This premise is based on the fact that people are just social beings. Actions of each member actually determine the structure of the group.
Next is interdependence. Now if we have a support such as Tourette Syndrome support group, we can exercise interdependence on a much positive level. I’m saying this because some people might negate the fundamental aspect of interdependence. One thing that we can all think of is if one event in the group affects one person then the event affects all. The disadvantage is we might get too dependent in our group that we might not function well without it. I’m reiterating that interdependence can be exercised on a positive level by sharing and believing in what others are willing to offer and be able to use this for our own advantage. We all just have to know that pertaining to a group as dynamic in its entirety is including the definition of interdependence among members.
The development of support group for TS is also based on the fact that we must have a reason for it. Each member’s existence is based on a common goal. Sometimes, even if we don’t admit to ourselves, we all have goals that are arduous to achieve unless we join a group— taking for example the advocacy that I just started. In my hopes to form a support group for TS, it will be very hard to be successful if I am the only one working on it. My goals will not be concrete if I don’t have members who have the same aspiration as mine. These goals can only be effective if it is meaningful to its members.
Motivation is also an important consideration. The support group should be satisfying to each member through their association with each other. Each member should have a personal impetus to be a part of the group.
The support group has to be structured. The structure means that each member should interact within a definite set of norms and values and that each member has an explicit role within the group. Finally is the idea of interpersonal influence. Again, I would like to point out this should be used in a positive level as in healthy mutual influence.
The concepts I mentioned are just part and parcel to the development of the support group for Tourette Sndrome. The most important thing is everything and everyone should relate in a healthy way in order to provide help, understanding, and change in the most comfortable way. All these can de dealt in theory, research and finally practice.
I hope that this will be of help to parents and other people who would like to be a part of the support group for the rest of their lives. This is one way to tell you that we’re not only making the subject on Tourette Syndrome an awareness but more on giving the people behind it a much valued consideration.
For that I would like to leave you a quote from John D. Rockefeller to add up to my numerous reasons why I would like to offer my services:
“ I will pay more for the ability to deal with people than for any other ability under the sun.”
-----------------------------
Original article Posted on March 3, 2007
The importance of groups can be rooted in our need to belong. Belongingness together with love is our third hierarchy of needs according to Maslow. We always been and we always will be a member of a group. Being in them makes groups one of the most important factors in our lives. Oftentimes, our membership in a group relates to our identity. It is how we introduce ourselves with a lot of people.
The impact of groups in our society is also just as important. According to David and Frank Johnson, as the effectiveness of our group goes, so does the quality of life. I have great concern to strengthen the support group for TS, which is to just increase productivity in the advocacy that I’m making and in the long run increase productivity from the activities that the support group will be having in the future. Another is the knowledge of group dynamics which makes formation of group predominant not only to the quality of life, but also to effective businesses, education, maintaining a doable family and long term maintenance of psychological health.
The knowledge for group dynamics is an excellent tool in order to understand a little bit more how group works. But of course, as we all know our world is always engaged in reforms so fast that groups are also considered to be more and more complex and difficult to understand. The complexity of group dynamics in TS goes beyond understanding and application. We might just ask ourselves, if forming a support group for TS can be helpful in performing a task, how come others can perform well if they are alone? Do these people seek relationship with other people? Or do they avoid it? Do they really want to be a part of a support group? Or do they enjoy being atypical from others? Well, even if you still want to add to those questions that make groups even more complex it is still very vital to one’s own function as an individual.
The essence of group dynamics in the formation of support group for TS is for one thing about interpersonal relationships. I have talked in my other articles about how a person with TS can improve by working on himself first above all others. Now, reaching out to others also contributes to the development of one’s own function not only as an individual but an individual in groups. A group is never a group if nobody’s interacting after all. This premise is based on the fact that people are just social beings. Actions of each member actually determine the structure of the group.
Next is interdependence. Now if we have a support such as Tourette Syndrome support group, we can exercise interdependence on a much positive level. I’m saying this because some people might negate the fundamental aspect of interdependence. One thing that we can all think of is if one event in the group affects one person then the event affects all. The disadvantage is we might get too dependent in our group that we might not function well without it. I’m reiterating that interdependence can be exercised on a positive level by sharing and believing in what others are willing to offer and be able to use this for our own advantage. We all just have to know that pertaining to a group as dynamic in its entirety is including the definition of interdependence among members.
The development of support group for TS is also based on the fact that we must have a reason for it. Each member’s existence is based on a common goal. Sometimes, even if we don’t admit to ourselves, we all have goals that are arduous to achieve unless we join a group— taking for example the advocacy that I just started. In my hopes to form a support group for TS, it will be very hard to be successful if I am the only one working on it. My goals will not be concrete if I don’t have members who have the same aspiration as mine. These goals can only be effective if it is meaningful to its members.
Motivation is also an important consideration. The support group should be satisfying to each member through their association with each other. Each member should have a personal impetus to be a part of the group.
The support group has to be structured. The structure means that each member should interact within a definite set of norms and values and that each member has an explicit role within the group. Finally is the idea of interpersonal influence. Again, I would like to point out this should be used in a positive level as in healthy mutual influence.
The concepts I mentioned are just part and parcel to the development of the support group for Tourette Sndrome. The most important thing is everything and everyone should relate in a healthy way in order to provide help, understanding, and change in the most comfortable way. All these can de dealt in theory, research and finally practice.
I hope that this will be of help to parents and other people who would like to be a part of the support group for the rest of their lives. This is one way to tell you that we’re not only making the subject on Tourette Syndrome an awareness but more on giving the people behind it a much valued consideration.
For that I would like to leave you a quote from John D. Rockefeller to add up to my numerous reasons why I would like to offer my services:
“ I will pay more for the ability to deal with people than for any other ability under the sun.”
-----------------------------
Original article Posted on March 3, 2007
Contemplating on Self- Esteem for People with Tourette Syndrome
For people in the society, self- esteem played a vital role in functioning not only as an individual but an individual in the social perspective. The word reflects one person’s admiration for himself. Value, respect, regard are just some of the words that are associated with it. Those words are powerful for one’s own well- being. When we say that a person has a “high self- esteem” we often regard to somebody who’s well opinionated, somebody who respects one’s own decisions and does practically most of the things with conviction. On the other hand, somebody who is low- esteemed is almost often associated with inferiority complex, indecisiveness, substandard, mediocre and a lot more. Since we are all entitled to our own definitions of what self- esteem is all about, I think what’s more important is how to create self- esteem on a positive level whether it be in moderate or high level.
Making our esteem work for us on our daily lives is not as easy as it seems. For one thing our perceptions of ourselves vary from time to time. Our feelings and thoughts are somewhat dependent on our daily experiences. Some of this might be scoring high on an exam, or getting the job you love, or probably losing something you’ve always wanted. These are just examples of how it affects what you think of yourself.
For somebody who has Tourette Syndrome, everyday of their lives is obviously a roller coaster ride. For one thing, they might not be able to do things the same way other people do. Writing down a simple note might take them hours to do. Walking their dog to the park might be an enormous task. Saying “I love you” might also be something so grueling. Because of all these simple tasks that seem so complex for somebody who has tourette, self-esteem is beyond doubt affected. Many social issues also arise when self- esteem is depleted. One important factor to consider is finding out the things that you can control. Because that will lead your way to working these things out for yourself rather than things that you are not in control of. If a person sees you different the first time and made you feel ridiculed, exonerate this person’s behavior for he obviously might not know the reasons behind your indifference. But if a person already understands what you’re going through but still is insensitive to your feelings then the best thing you can do is work yourself out so that these negative experiences would not affect how you feel for yourself.
In the psychological self, we have what we call “psychological boundary”. This boundary maintains our own decisions and influences and practically helps you determine if a given situation is good for you or not. When we often rely on our present capability to resolve on how we think of ourselves, poor self- esteem come into the picture. This is the time when we are dependent on external experiences to offset all the negative feelings that we have, the result— temporary happiness. Our psychological boundary becomes so thin or even permeable to negative feelings and thoughts making us so fragile or vulnerable that our self- esteem is sacrificed. In order to help you maintain the psychological boundary that we are talking about and be able to raise your spirits up despite the downbeats is learning how to accurately assess yourself, to value yourself, and to accept yourself unconditionally.
Assessing yourself might not be so hard at all. Just take a good look at yourself and contemplate on keeping in mind that you have a purpose in this world. Whatever that purpose is, you need yourself to rely on in order to reach your goal. Reaching your goal means preserving yourself to make the right decisions, to understand the world around you or better yet to admit to yourself that despite life has been so unfair— life still is good. And it’s actually great to be given a chance to live in this world. Highlight what you can do rather than what you cannot. Emphasize your talents and nurture them so that you will be able to share them to people.
Valuing yourself is another thing to consider. You have to be able to keep yourself worthy primarily for yourself and secondarily to your family and friends. Keeping a mantra everyday when you wake in the morning is one exercise that will help you value yourself more. This is one practice I have been doing since I learned it. Having a mantra for yourself is just like complimenting yourself for looking good or basically for whatever it is that you’re proud to have done in your life.
Accepting yourself is just as important. It is to realistically accept your strengths and weaknesses. Everybody has their own strengths and weaknesses. Having TS might be your weakness but don’t let this ruin your capability to live life to the fullest. I remember one quote from the United States’ Tourette Syndrome Association—and I’d like you to bear this in mind—- “I have Tourettes, But Tourettes doesn’t have me!”
They say that self- esteem mainly develops during childhood. This is an eye- opener for parents since children during their childhood would greatly rely on their parents for their daily experiences. Considering a child who has Tourettes obviously need guidance but I would like to reiterate that if you have more than one child, then your other children needs equal guidance as well. Most of the time, the simple the experience is of the child, the more impact this has on the child’s self- esteem. Do not dispense with a child wanting to tell you stories of his experiences in school. Always take time to listen. Praise your child for something he has done well for himself, even if it’s too small for you— like making scribbles on paper, tying his shoes or even helping a classmate at school. Hug and kiss them once in a while. And to tell you honestly, most families in the Philippine society might not be mushy at all but saying “I love you” once in a while helps. All these and more lead to healthy self- esteem in the long run.
Always remember that before you can even go your way through improving your self- esteem you must first open yourself to change. Challenge your inner self for better decisions, better acceptance, valuing yourself and loving yourself on top of that. Then the last one would be opening up yourself to people, get help from others if you need to. Sometimes, you might not even notice but people are willing to help…all you need is to ask.
Original article posted on February 25, 2007
Copyright 2007 By: MRB Victorino
Last Update: June 2, 2007
Making our esteem work for us on our daily lives is not as easy as it seems. For one thing our perceptions of ourselves vary from time to time. Our feelings and thoughts are somewhat dependent on our daily experiences. Some of this might be scoring high on an exam, or getting the job you love, or probably losing something you’ve always wanted. These are just examples of how it affects what you think of yourself.
For somebody who has Tourette Syndrome, everyday of their lives is obviously a roller coaster ride. For one thing, they might not be able to do things the same way other people do. Writing down a simple note might take them hours to do. Walking their dog to the park might be an enormous task. Saying “I love you” might also be something so grueling. Because of all these simple tasks that seem so complex for somebody who has tourette, self-esteem is beyond doubt affected. Many social issues also arise when self- esteem is depleted. One important factor to consider is finding out the things that you can control. Because that will lead your way to working these things out for yourself rather than things that you are not in control of. If a person sees you different the first time and made you feel ridiculed, exonerate this person’s behavior for he obviously might not know the reasons behind your indifference. But if a person already understands what you’re going through but still is insensitive to your feelings then the best thing you can do is work yourself out so that these negative experiences would not affect how you feel for yourself.
In the psychological self, we have what we call “psychological boundary”. This boundary maintains our own decisions and influences and practically helps you determine if a given situation is good for you or not. When we often rely on our present capability to resolve on how we think of ourselves, poor self- esteem come into the picture. This is the time when we are dependent on external experiences to offset all the negative feelings that we have, the result— temporary happiness. Our psychological boundary becomes so thin or even permeable to negative feelings and thoughts making us so fragile or vulnerable that our self- esteem is sacrificed. In order to help you maintain the psychological boundary that we are talking about and be able to raise your spirits up despite the downbeats is learning how to accurately assess yourself, to value yourself, and to accept yourself unconditionally.
Assessing yourself might not be so hard at all. Just take a good look at yourself and contemplate on keeping in mind that you have a purpose in this world. Whatever that purpose is, you need yourself to rely on in order to reach your goal. Reaching your goal means preserving yourself to make the right decisions, to understand the world around you or better yet to admit to yourself that despite life has been so unfair— life still is good. And it’s actually great to be given a chance to live in this world. Highlight what you can do rather than what you cannot. Emphasize your talents and nurture them so that you will be able to share them to people.
Valuing yourself is another thing to consider. You have to be able to keep yourself worthy primarily for yourself and secondarily to your family and friends. Keeping a mantra everyday when you wake in the morning is one exercise that will help you value yourself more. This is one practice I have been doing since I learned it. Having a mantra for yourself is just like complimenting yourself for looking good or basically for whatever it is that you’re proud to have done in your life.
Accepting yourself is just as important. It is to realistically accept your strengths and weaknesses. Everybody has their own strengths and weaknesses. Having TS might be your weakness but don’t let this ruin your capability to live life to the fullest. I remember one quote from the United States’ Tourette Syndrome Association—and I’d like you to bear this in mind—- “I have Tourettes, But Tourettes doesn’t have me!”
They say that self- esteem mainly develops during childhood. This is an eye- opener for parents since children during their childhood would greatly rely on their parents for their daily experiences. Considering a child who has Tourettes obviously need guidance but I would like to reiterate that if you have more than one child, then your other children needs equal guidance as well. Most of the time, the simple the experience is of the child, the more impact this has on the child’s self- esteem. Do not dispense with a child wanting to tell you stories of his experiences in school. Always take time to listen. Praise your child for something he has done well for himself, even if it’s too small for you— like making scribbles on paper, tying his shoes or even helping a classmate at school. Hug and kiss them once in a while. And to tell you honestly, most families in the Philippine society might not be mushy at all but saying “I love you” once in a while helps. All these and more lead to healthy self- esteem in the long run.
Always remember that before you can even go your way through improving your self- esteem you must first open yourself to change. Challenge your inner self for better decisions, better acceptance, valuing yourself and loving yourself on top of that. Then the last one would be opening up yourself to people, get help from others if you need to. Sometimes, you might not even notice but people are willing to help…all you need is to ask.
Original article posted on February 25, 2007
Copyright 2007 By: MRB Victorino
Last Update: June 2, 2007
6/01/2007
Consultants
JARUNGCHAI ANTON S. VATANAGUL, MDMedical Consultant for PTSA
St. Lukes Medical Center
Internal Medicine
Adult Neurology
LETICIA PENANO- HO, Ph.D.
Consultant in Psychology for PTSA
Clinical Psychologist/ Neurotherapist
University of the Philippines
MARIA CRISTINA MACROHON
Medical Consultant for PTSA
St. Lukes Medical Center
Internal Medicine- Adult Neurology
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