PHILIPPINE TOURETTE SYNDROME ASSOCIATION: What is PTSA?

The Philippine Tourette Syndrome Association (PTSA) is the first and only non-profit, non- stock organization about Tourette Syndrome based in the Philippines. It is an association of (1) professionals from the field of medicine, counseling, education and psychology and (2) lay persons particularly the individuals diagnosed with the disorder, their parents, relatives and significant others.
Originally organized in February 16, 2007 as a “Tourette Syndrome Core Group” and registered with the Securities and Exchange Commission on April, 2008 as Philippine Tourette Syndrome Association (PTSA). The organization was made because of a common goal to address the specific needs of the” Persons with Tourette Syndrome “ (PWTS) and be able to help them recognize their inherent capabilities in coping with the disorder better and develop their full potentials to become successful individuals in their own little way.
PTSA recognizes the significance of nurturing this special group as part of the Philippine’s society noting that many Filipinos are unaware of the existence of the disorder in the country. Furthermore, misconceptions about the disorder are a frequent occurrence. With PTSA’s efforts to disseminate information about the disorder will enable replacement of those misconceptions with reliable facts from the most recent literature on Tourette Syndrome not only from the Philippines but from resources all over the world.
PTSA as an organization is powered by its human workforce of professional experts with a wide array of experiences in various disciplines that are needed to suit the needs of the PWTS. This workforce makes the organization dynamic as it is multi-faceted in nature.

Group Dynamics as Intervention for Filipinos Diagnosed with Tourette Syndrome

This research had been presented in the 1st Philippine Graduate Conference in Education at the UP College of Education last March 07, 2009.


ABSTRACT OF THE RESEARCH

Unusual blinking of the eye, peculiar hand movements, sound repetitions, word echoing are just some of the symptoms associated with Tourette Syndrome (TS). With different manifestations, people who are diagnosed with the disorder are often ridiculed simply because the public’s lack of knowledge regarding the disorder.

Tourette Syndrome is a neurological disorder characterized by neurological tics which are often physical and verbal. The attacks are even so transient that after the occurrence of a tic or tics, the person can go back to his or her usual business. Symptoms of Tourette's are tics like sniffing, coughing, humming, whistling, throat clearing, shoulder shrugging, eye blinking, and neck stretching. The onset of the disorder usually begins in childhood at age between 7- 10. The occurrence of symptoms usually begins on the face called facial tics and if the symptoms worsen may progress down to the lower body. Symptoms usually intensify during teenage years and diminish in late adolescence or early adulthood. Patients may also develop co-occurring behavioral disorders, namely obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD) or attention deficit disorder (ADD), poor impulse control, and/or sleep disorders.

The study is a quasi- experimental research with the use of a one-group-pretest- posttest design. With the use of group counseling as an aspect of group dynamics, this paper specifically explored the underlying issues, problems or concerns of a person with Tourette Syndrome to help the person cope with the disorder. Consequently, this paper also intended to document the possible beneficial effects of group counseling for the medical clientele.

This study involved five Filipino male respondents suffering from Tourette Syndrome, all in the prime of their lives, age ranging from 19 to 28. One of them has a co-morbid disorder and one was medicating at the time of the study. Two of the respondents have severe form of the disorder exhibiting behavior such as coughing, itching, head jerking, barking, kicking, arm folding, knee bumping, teeth sucking and eye poking. All five suffer from the Tourette Syndrome’s physiological symptom (tic), behavioral (loss of self-esteem, irritability, aggression and lack of concentration) and psychosocial (inability to interact, anxiety, depression, social stigma and social isolation).

Different counseling needs of the five respondents were discovered such as health concerns, anxiety for not finishing their studies, wariness about their future employment, inability to perform household and social responsibilities and concern over non-acceptance by peers. Specific counseling needs akin to an individual were also identified.

The five respondents underwent a series of group counseling sessions. A comparison of their pre- and post-test average scores on the Tourette Syndrome Symptom Assessment Scale (TSSAS) revealed a significant decrease of the symptoms after the group counseling sessions, except for the physiological (tics), which remained constant even after the group counseling. Highest percentage decrease was registered on depression (-40%), social isolation (-35.48%), aggression (-31.03%), irritability (-30.55%) and anxiety (-27.77%). The lowest percentage decrease even after the group counseling was on self-esteem (-10.71%) and interaction (-16.36%), probably indicating that the respondents’ self-esteem was so low as a result of the Tourette Syndrome. The significant effect, however, of group counseling as manifested in the percentage decrease of the symptoms after the intervention reveals that group counseling as an intervention among individuals suffering from the disorder really works.

T-test analysis revealed that there is no significant difference between physiological and psychosocial symptoms of Tourette Syndrome and group counseling. However, this study found a significant difference between behavioral symptoms and Group Counseling.This study validates the finding of earlier studies that group counseling is an effective intervention strategy in order to alleviate the condition of individuals suffering from Tourette syndrome. This study may spark other studies on Tourette syndrome aimed at creating a knowledge base for better understanding of the disorder. This may prove beneficial not only to individuals with Tourette syndrome and their families but also to medical doctors, psychiatrists, neuropsychologists, educators, and counselors who have been caregivers of individuals with Tourette syndrome.

In a general sense, group counseling may be regarded as an effective intervention strategy for individuals diagnosed with Tourette syndrome. The bottom line is the understanding that society has on individuals with Tourette syndrome. It is important for medical doctors, psychologists and guidance counselors to make an advocacy for the general society to understand the situation of these individuals. Understanding each one of them heightens the understanding of using group counseling as an effective intervention for individuals diagnosed with Tourette syndrome.

This researcher suggests peer education programs to be spearheaded by counselors in different settings as these kinds of programs may prevent occurrence of bullying and teasing which are very common among individuals with Tourette syndrome.

In addition, it is suggested that further research in industrial setting be conducted aimed at assisting industrial counselors explore the issues underlying the disorder and how these factors affect individuals with the syndrome in the work place and their relationships with co-workers in order to improve working skills and relationships.

Finally, this research suggests the possibility to include the study of Tourette Syndrome and other special groups in the discipline of Counselor Education aimed at widening and enriching the perspective of the discipline, which may bridge counselor education with other disciplines such as Psychology and Medicine and other medical allied professions.
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AUTHOR: Maria Rowena Balmores- Victorino, M.Ed.,RN, CRNC

Neurofeedback and Tourette Syndrome

Understanding Brainwaves: The origin of all our emotions, thoughts and behaviors are the complex networks of communication among billions of neurons in our brains. The communication brought up by the patterns produced by these neurons, manifested by rhythm or pulse, is measured by what we call BRAINWAVES. Brainwaves are tiny pulses of electricity produced whenever one neuron communicates with the other. It actually results from what you are doing from moment to moment. The slowest brain waves are the delta waves, we experience this during sleep. Beta3, on the hand, is for our highest levels of concentration. Neurofeedback’s goal is to teach you to recognize and use your calm (SMR) waves and your thinker (BETA) waves. By using the computer monitor to watch your brain wave activity you can train yourself to stay out of the Theta and Alpha levels. This means that a single defect in the patterns of communication within the brain causes problems considerably. This happens when, say for example, you feel very anxious and you feel that their are reactions which occurs in your body such as stomach ache, nausea, headache and others, your brain has elicit within itself a pattern resulting in these symptoms. And these patterns can result from very diverse possible stressors. In an individual with Tourette syndrome, it has been reiterated in the other articles on this site that the brain electrical activity is defective; Dr. Mink even described it to be somewhat “buggy”.

BAND HERTZ MS
Delta 0.0-4.0 1000
Theta 4.0-8.0 1000
Alpha 8.0-13.0 500
SMR 13.0-15.0 500
Beta 15.0-18.0 250
Beta2 18.0-24.0 125
Beta3 24.0-32.0 125


How Neurofeedback Works: If the brain is not functioning at its finest, our body manifests a variety of physical or mental problems. Furthermore, cognitive, behavioral, psychological and other bodily issues can also be traced back from a poorly functioning brain. What neurofeedback does is that it trains the brain to improve its function, much like when you exercise to maintain fitness. It is a technique to train the brain to normalize functions of the body and mind.

One of the technique’s strong points is that it obtains upon the brain’s ability to learn and adapt. It actually deals with the problems at its core, it is non-invasive and the effects are lasting and permanent.

Since the therapy teaches the brain to operate effectively, the treatment is not only limited to recovering injury or coping with problems but helping the brain to get back on track so we can perform our daily activities. In fact, it can also be useful to facilitate peak performance like for example activities of an athlete or somebody who holds a corporate executive position.

The Procedure: Like all other therapies, it begins with an intake interview to know more about the condition of the person, the existing symptoms, the onset, the background etc. An EEG (electroencephalogram) is used to record all abnormalities produced in the pattern of brain waves. The waves will be used to identify certain frequency bands as areas for improvement. This will then be appraised as to what degree the symptoms may be resolved using neurofeedback therapy.

It is very important for you to know that the procedure is completely painless. There will just be EEG sensors attached to the scalp. These sensors are attached to an amplifier and a computer monitor to process the signal and provide appropriate feedback. It is also very important for you to know that the sensors do not do anything to your scalp or your brain for that matter, these are “read-only” sensors that permits transfer of the signals made by your brain to the computer just so feedback can happen. The training which occurs during the procedure can be in a form of a game, a video, auditory signals, or a combination of these modes. When the brain frequency show the normal brain pattern the person is rewarded by receiving points in the game or receiving auditory cues. Consequently, when the brain produced undesirable brain patterns, the person will have no points in the game or no auditory cues. What happens is that the brain learns to produce new and healthy patterns and eventually adapts and uses the desirable pattern.

The therapy has no known side effects. Depending on your choice, this kind of therapy is often coupled with medications and other therapies of your choice. Neurofeedback therapy usually lasts for about 40 minutes to 1 hour. The number of session depends from individual to individual and depends on the severity of the problem, but 40 sessions is the general guidelines. You can already see a considerable improvement within 15 sessions.
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This article was written for the purpose of education and not to endorse a particular therapy regimen.

Your Diet and Tourette Syndrome

Many of us have been wondering what could possibly be the correct diet regimen for people who have Tourette Syndrome. For people who are very meticulous with what they eat, they also sometimes wonder whether certain ingredients affect the production of tics in individuals with Tourette Syndrome. Unfortunately, this is where all the complications come in.

It is universally accepted that if we eat healthy then good health will follow.
Same concept lies in consuming foods containing too much fat which can lead to high levels of cholesterol in the body which can eventually lead to heart disease. But then again the question still remains whether there are some foods that lead to the symptoms present in an individual with Tourette Syndrome.

One needs to understand that the symptoms of Tourette Syndrome wax and wane during the course of the illness. This means that there are times when the symptoms are less and there are also times when the symptoms are at their peak. In connecting these to the diet of the person, you will really come to terms when you might be questioning your own nutrition that may lead to the changes in symptoms. Another thing is whether there are certain cyclical events that can also lead to having the symptoms of the disorder. One example is a woman’s menstrual cycle. According to Dr. Gerald Erenberg, the medical advisory board of the Tourette Syndrome Clinic at Cleveland, there are actually two theories that explains the relation of nutrition with the symptoms of Tourette syndrome.

“…that certain components in food lead to the symptoms, acting in that individual like a toxin or poison, and two, that the symp­toms are due to food allergies.”

There were a variety of foods that have been regarded as possible crooks in leading to tics or that of ADHD. The first report on this was documented by Dr. Feingold. He said that SUGAR and ARTIFICIAL INGREDIENTS cause the problems. Because of this discovery, Dr. Feingold came up with a diet called the FEINGOLD DIET. Many people found this to be true and felt that this is the nutritional answer to what causes Tourette Syndrome and ADHD. Eventually, other food groups have also been suggested that may cause these disorders. These foods are GLUTEN and DAIRY PRODUCTS.

Considering those food groups, it is an important note that the effect of these foods may not be the same for each individual. Others may find these effective, and others may not. Consequently, foods containing these ingredients may cause problems with an individual, but not with the other. The diet will now be a combination diet restricting all of the suspected ingredients. But still, this is an impossible diet to follow since most of us especially children consume some of these ingredients almost everyday. Taking for example, a 7 year old child diagnosed with Tourette syndrome who, in most cases, would take his daily dose of milk.

The second theory entails that any person can be allergic to any foods. Dr. Erenderg said that the allergic reaction shows up as tics and behavioral problems rather than the usual allergic reactions such as itching, bloating, hot flushes, rashes, etc. When we think that the person is allergic to certain kinds of foods, we subject the person to tests and put on an elimination diet to see what foods cause the increase in tics. For most people, this is a very challenging undertaking especially if the foods that were supposed to be eliminated are our favorite foods. And also because of the fact that the reliability of the tests used to diagnose food allergies are being questioned by the doctors themselves.

The facts mentioned above plus the oscillating symptoms of the disorder makes it even more complicated, complicating the question whether the increase in tics is due to cause and effect or just because of the standard course of the illness. This concept also applies in pharmacotherapy or the use of medications to manage symptoms of Tourette Symptom. The question also lies whether the tics are managed because of the effects of medication or just because of the waxing and waning of the symptoms of the disorder.

So what should you do then? Well, there is no definite answer as to what foods to avoid. It’s just keeping track on what you eat and finding out if these foods actually lessen your tics. It is often advised to keep a food diary. In this way, you will be monitoring the effects of the foods you consume on your tics so that the actual effects of these foods will be more concrete rather than just assuming that certain foods actually cause the tics. It is better if you do this yourself rather than just relying on hearsays.

Now, I think most of the people diagnosed have been taking supplements to aid them in controlling the symptoms of Tourette syndrome. Here’s the deal about supplements available today. While there have been many anectodal reports saying the efficiency of these supplements in the treatment and/ or management of Tourette Syndrome, the predicament of these supplements lies on which one to take because makers of these products claim that their products are more effective than others. Some of these supplements are the vitamins, minerals, enzymes, products from organic sources (grape seed extract, blue green algae, omega-3 oil) and other herbal products. Oftentimes we are more enthusiastic if these supplements are based on some proven scientific studies. But unfortunately, there are not enough studies to lead us to these supplements reliability. One thing you need to look for if it is approved by BFAD (Bureau of Food and Drugs in the Philippines) in the Philippines or FDA (Food and Drug Administration) in the US or its counterpart in your country for the products’ effectiveness and safety. Because some of these supplements especially herbal products contains potentially dangerous contaminants. And oftentimes, the efficiency of these products vary from supplier to supplier or varies within different batches of the same supplier.

All of these information should lead us to be very smart consumers. And we should also keep in mind that TOURETTE SYNDROME HAS NO CURE. All the products available to treat or manage the disorder provide the purpose of controlling the tics just so the individual will not have a hard time. It is also an important note to keep in mind that the tics wax and wane during the course of the illness. The thing is, take in what works best for you. I would also like you to remember that the PROGNOSIS IS GENERALLY GOOD...BUT THE NEUROBEHAVIORAL PROBLEMS MAY PERSIST AND CAN DEBILITATE THE PERSON MORE THAN THE TICS THEMSELVES. We may be more focused on the tics of the person that we forget the person behind the disorder who is first and foremost an individual before becoming an individual with Tourette Syndrome.

See the convential treatment for Tourette Syndrome
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This article was written from a reference article by Dr. Gerald Erenberg entitled "Is There a Connection Between Nutrition and an Increase in TS Symptoms?"

Having Tics? Here's What You Need To Do

Having Tics? Here’s What You Need To Do


If you are experiencing tics (sudden, repetitive movements or sounds) most of your life or if you have observed that your child has been experiencing some form of uncontrollable movements which you cannot explain, DO NOT DISREGARD. At first we may think that the movements may just be mannerisms that they will overcome in the long run--think twice and address. It is always a better way not to disregard especially if the movements bother you or the person who has it.

Though, we may not conclude that you or somebody close to you is having Tourette Syndrome, here is the basis for it. Doctors actually use The Diagnostic and Statistical Manual of Mental Disorders for making the diagnosis. If you happen to fall on this criteria then you may have Tourette Syndrome.

DSM-IV Criteria for Tourette Syndrome:

• both multiple motor tics and one or more vocal tics must be present at
the same time, although not necessarily concurrently;
• the tics must occur many times a day (usually in bouts) nearly every
day or intermittently over more than 1 year, during which time there
must not have been a tic-free period of more than 3 consecutive months;
• the age at onset must be less than 18 years;
• the disturbance must not be due to the direct physiological effects of
a substance (e.g. stimulants) or a general medical condition (e.g.
Huntington's disease or postviral encephalitis).

Having said that, the DSM-IV is not the only tool for diagnosing the disorder, doctors may also ask for the history--- how you come to notice the tics especially the frequency and types of tics. Just to refresh your memory on what Tourette Syndrome is all about, please read “What You Need To Know About Tourette Syndrome”.

Now, you may be wondering what you will undergo having those kinds of repetitive movements. It is very important to visit the doctor as soon as you notice the tics. It is better to address everything as soon as possible rather than later. Be prepared for tons of questions. The doctor will definitely look at the family’s medical history, the person’s symptoms and other clues to make a diagnosis. However, there are no standard tests for TS. Oftentimes, the doctors may use imaging tests like computerized tomography scan (CT Scan), electroencephalograms (EEG’s), magnetic resonance imaging tests (MRIs) and blood tests to rule out other conditions that might have symptoms similar to Tourette Syndrome.

TOURETTE SYNDROME IS NOT A PSYCHIATRIC ILLNESS, for people who want to be finally diagnosed, please go directly to a NEUROLOGIST or a MOVEMENT DISORDER SPECIALIST. But do not be surprised if you will be referred to a psychiatrist or a psychologist, they will also help in addressing certain issues involved with TS. Oftentimes, these people work together to finally come up with a correct diagnosis and eventually help the person seek treatment.

Since Tourette Syndrome is a SPECTRUM DISORDER ( a combination of tics, attention deficit hyperactivity disorder, obsessive compulsive disorder and other neurobehavioral disorders) other symptoms that may last for a longer period of time needs to be taken into consideration especially if they interfere with the normal function of the individual. Upon diagnosis, it is also suggested that you come to a neuropsychologist or clinical psychologist who are experts in handling special population such as TS for a deeper evaluation. Why do you need to do this? This will help you understand more of the issues or problems associated with TS in the behavioral, psychological, and social aspect which according to some parents, are more debilitating than the tics themselves. Counseling or psychotherapy is also a big help since it is proven to be effective treatment modality in medical clientele such as TS individuals.

In order to help you or your loved one cope with TS, it is very important for you to;

· EDUCATE YOURSELF ABOUT TS. Read on articles, journals, books, newspapers, and other resources about Tourette Syndrome. In this way, you can also educate others as well especially those people who will be dealing with TS in the long run.
· KEEP A JOURNAL OF THE HISTORY OF YOUR DISORDER. Jotting down important situations in your life that may be relevant in identifying specific factors associated with your disorder may help you a lot.
· OBSERVE, MONITOR AND DOCUMENT YOUR TICS. Keeping track of your symptoms will help you see the progress of your disorder and find out specific treatments that may be effective during the course of your illness.
· GET INVOLVED. Since TS is just new in the Philippines, we will all find great comfort if we get to learn from each others experiences with TS and offer a helping hand.
· FIND EXTERNAL SUPPORT. Join organizations or support groups offering services for the people involved with TS. In the Philippines, you can join the Philippine Tourette Syndrome Association to know other Filipinos involved.
· STRENGTHEN FAMILY SUPPORT. If the family is intact in providing support for the individual with TS, the person can go a long way in coping with the disorder better.
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Reference: Kids Health Website, 2007
Tourette Syndrome Diagnostic Criteria, 2004