Disabled but Able

        Does a disability really need to exclude one from being a "functional" member of society? Is the disability an obvious one like Tourette Syndrome or Parkinson's Disease, or a more obscure condition such as anxiety or depression? Irregardless; the degree of dysfunctionality depends in part on the person involved, societies understanding or lack thereof, as well as the severity of the disorder. According to the Americans with Disabilities Act (ADA), a disability is defined as:

(A)  a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment.

The first part of the definition covers persons who actually have physical or mental impairments that substantially limit one or more major life activities. The focus under the first part is on the individual, to determine if (s)he has a substantially limiting impairment. To fall under the first part of the definition, a person must establish three elements:

(1) that (s)he has a physical or mental impairment

(2) that impairment substantially limits said individual

(3) one or more major life activities are affected.

The second and third parts of the definition cover persons who may not have an impairment that substantially limits a major life activity but who have a history of, or have been misclassified as having, such a substantially limiting impairment, or who are perceived as having such a substantially limiting impairment. The focus under the second and third parts is on the reactions of other persons to a history of an impairment or to a perceived impairment. A history or perception of an impairment that substantially limits a major life activity is a "disability."

The ADA was adopted by The U.S. Equal Opportunity Employment Commission in 1995 to prevention discrimination in the workplace for individuals with defined disabilities; however, the bill is a poor attempt at preventing said discrimination, and even provides for selective discrimination in certain instances. One example of such is Tourette Syndrome, as even though this condition meets all definitions of a disability as outlined in the ADA, certain contradictions arise with reference to TS. Considering that Tourette Syndrome can be disruptive due to vocalizations (in particular Corprolalia), and the fact that the ADA does not disallow discrimination for any "disruptive conditions", employers can and will discriminate against individuals with TS even though this affliction meets all definitions of an ADA Disability. Is it really a surprise that our government enacts legislation that is proposed to prevent discrimination in the workplace, leads the "protected" disability groups to feel they are protected from such actions, and leaves the affected individual with feelings of hopelessness and despair when a discriminatory act occurs?
       A note to individuals with Tourette's: If you have Corprolalia, annoying tics, or troublesome vocalizations don't rest assured. Your employer can and will take swift and decisive action against you and your livelihood. Lets ban together and show the government and citizens of our community that even though we are disabled we are able!

Tourette Syndrome and Deep Brain Stimulation

DBS (Deep Brain Stimulation)  was approved by the FDA for Parkinson's Disease in 2002, and for the treatment of Dystonia in April 2003. DBS for Tourette Syndrome is not a new concept, and has been studied for years in other countries such as the Netherlands, The UK, and The United States. To date; however, DBS has not been approved by the FDA for the treatment of TS. Nevertheless, DBS continues to be used in select cases of TS, despite the lack of clinical findings that substantiate its' effectiveness. DBS is a surgical treatment in which a device called a neurostimulator delivers tiny electrical signals via implanted electrodes to the areas of the brain that control movement. The DBS system consists of three parts:

A thin, insulated wire called a lead, or electrode that is placed into the brain

The neurostimulator, similar to a heart pacemaker, which is usually placed under the skin near the collarbone, but may be placed elsewhere in the body

Another thin insulated wire called an extension that connects the lead to the neurostimulator

The only differentiation between DBS for Tourette's and for other movement disorders is the placement of the electrodes deep within the brains structures. For the treatment of Parkinson's and Dystonia the "target area" for the electrodes is a structure called the Globus Pallidus, and for the treatment of TS the location that is targeted is referred to as the Subthalmic Nucleus.

                                                    During Surgery

Post Operative Picture

In late 2005 I became interested in DBS for the treatment of my Tourette's, primarily because all conventional treatment options had failed. In early 2006 I located a Neurosurgeon that was willing to perform the procedure on me, and after several months of psychological testing I was scheduled for surgery on May 30th, 2006. Prior to the date arriving I was contacted by a media firm from the UK, and was asked if I would participate in a documentary about DBS for Tourette Syndrome that would be aired on the BBC, The Discovery Channel, and The Learning Channel. I enthusiastically agreed, and had the procedure according to schedule while being filmed for said documentary: DBS Procedure Animation
Although the surgical procedure had many risks such as intercranial bleeding, infection, electrode migration, and stroke just to name a few, I went through it with "flying colors".
       Approximately one month  after the procedure I returned to my Neurosurgeon to have the devices activated. The delay between the procedure and device activation allowed any "swelling" within my brain to subside, thereby assuring that my brain had returned to status quo. During this visit a Neuromodulation Specialist made fine adjustments to the computers (Internal Pulse Generators) implanted within my chest, as I provided feedback in relation to the "adjustments". I immediately noticed that despite the activation of the devices, I noticed little to no improvement in my TS Symptoms. It was explained to me in great detail before the surgery that it was an experimental procedure, and one of the risks was a lack of improvement in my condition.
      After many return visits to have these "adjustments" performed, there continues to be no change in my symptoms. After having gone through this highly invasive surgery and never noticing any postive changes, I have became increasingly frustrated to say the very least. I continue to see my Neurosurgeon to date in hopes that each visit will be the one that helps, but after 4 years of having done so, I have become very doubtful as to hope that I will ever see any benefits from my efforts.
      To sum it all up: I had the surgery as a "last ditch effort" in hopes of diminishing my tics and vocalizations because all other options had failed. But I have to be realistic in those hopes and realize that DBS is not a viable option for the treatment of TS, at least not in my case anyway. Maybe in the future; however, continuing research may reveal a better "target" area for the electrode placement, which may provide some relief for Tourette Sufferers. But I don't feel all has been lost. At the very least I have helped the medical community in its' ongoing attempts to control ailments like Tourette Syndrome. I am very fortunate; however, that my efforts did not lead to long term complications that would make TS pale in comparison.



Tourette Syndrome-Why Its Imperative To Obtain An Early Diagnosis

When I was a toddler I had all the energy and curiosity that a normal child should have, but lurking beneath the shadows was a horrible affliction that had yet to surface. According to my mothers own accounts; however, I began to exhibit strange and curious traits by the time I reached the age of six. What started as head twitches, squeaking and sniffing noises, and eye blinking rapidly progressed to even more prominent symptoms by the time I reached the age of seven. My mother, recognizing that this behavior was abnormal by any stretch of the imagination, began to have lengthy discussions with my father regarding such. My father; however, was not as perceptive or understanding as her, and he frequently denied that anything was wrong with me. In no time at all he began to discipline and physically abuse me for what he considered to be a behavioral issue, and frequently sent me to my bedroom without supper in attempts to disguise my actions from guests that he very often would entertain. I have vivid memories of lying on the floor in my bedroom, often peeking under the door in attempts to hear the adult conversations that were eminating from the living room. As hard as I would try to be silent; however, I would commence with various uncontrollable vocalizations, and upon my father hearing them, he would excuse himself from his company, enter my room, and begin to violently strike me with his belt or any other object that he could quickly grab. After what seemed like hours of abuse he would tell me to "shut up", and would leave me lying there crying and wondering to myself why I couldn't be silent. I remember often wondering why I couldn't be quiet, especially considering the consequences of not doing so, and a viscous cycle would always ensue of me producing noises followed by beatings, followed by noises and so on. Things would never change between my father and I, and in short order, my mother began taking me to every health care professional she could think of. I can remember seeing psychologists, psychiatrists, family practitioners and therapists, but the end result was always the same. I was told on so many occasions that I had a behavioral problem, or my tics were nervous habits, or I was seeking attention, that I began to wonder if maybe I really could control my symptoms but hadn't figured out how to just yet. These doctor visits would continue until I was approximately twelve years of age, but by this time I was suffering severe psychological and emotional problems from my manifestations, my fathers abuse, and mounting peer pressure from my friends and classmates due to my peculiar actions. Rather than being a confident and happy twelve year old as I should have been, I was distraught and wondering why this was happening to me.
When I turned thirteen my mother and father divorced, and within a couple of months she scheduled an appointment with a Neurologist, and the results of that visit would change my life from that point forward. On that day I was informed that there was an explanation for my behavior, and it was called Tourette Syndrome. I was immediately flooded with emotions ranging from happiness, to relief, to anger. I now had a "name" for my condition, but this could do little to erase the anguish and emotional distress I had suffered since my early youth. To this day I believe there are "emotional scars" related to the length of time between symptoms developing and diagnosis, but this was due to no fault of my mothers, rather ignorance in the medical community. Fortunately for the youth of today there is much more known about TS, and an early diagnosis is possible if parents recognize their childs bevavior as being abnormal. I still to this day; however, hear stories from parents whose child obviously has Tourette's, but has yet to have been diagnosed. They justify their childs symptoms as habits or bad behavior, and frequently punish them for this activity. I must reiterate; however, that there are no nervous habits only tics, and tics with vocalizations are conclusive for a definitive diagnosis of Tourette Syndrome. If you have a child or know a parent whose child exhibits behaviors previously described, please make sure they are taken to a physician as soon as sympoms are first noticed so a definitive diagnosis can me made. Failure to do so can not only disrupt a childs normal development, but also leave them with emotional issues that can last a lifetime. Ensuring this is done; however, can allow a child to overcome all the adversities that go hand in hand with TS. I don't want what occurred to me to ever happen to another child again. Please be your childs advocate for his/her sake.

Tourette Syndrome-Why Is It So Often Misunderstood?

The following is a note that I previously wrote on Facebook, but I thought it was important that I placed it on my Blog as well



Dr. Oliver Sacks M.D., renowned Neurologist and Author of Awakenings once said "Tourette Syndrome is easily the most misunderstood illness". As an individual with the worst form of this condition, I must concur with this statement. People with TS are destined to a life of ridicule, jeering, and social isolation just to name a few. Since I have lived with this malady for over 40 years, I have become somewhat accustomed to this degree of persecution. However, I am writing this note for all the affected children with TS that have yet to experience this degree of mistreatment. I am very fortunate to have family, friends, and in particular a very supportive wife that will defend my cause unconditionally. For many of our youth with Tourette's; however, they are not as fortunate. They will suffer segregation from their peers that will cause emotional "scarring" which will last a lifetime. I am kindly asking all of my Facebook Friends to spread the word of hope with regards to Tourette Syndrome. If you know someone that is "ignorant" to this illness, please inform them that the fate of our youth with TS depends on them. I thank each and everyone of you in advance for helping support my cause, and to ensure that these children can experience the joy and innocence that they deserve. Remind them that individuals with Tourette's have feelings also, and that they deserve to grow up with the confididence and resolve that a "normal" child would have.

Corprolalia-The Dark Side Of Tourette Syndrome

According to the Tourette Society, less that five percent of individuals with Tourette Syndrome have a rare and misunderstood symptom called Corprolalia. This is defined as involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks. As fate would have it, I suffer from these bizarre outbursts, and have been socially isolated and imprisoned in my own home as a result. I find it interesting and frustrating at the same time, that as America preaches racial equality and empathy for their fellow man, that I am being segregated for an illness I was destined to have as I developed in my mothers womb. Just as a person wants equal treatment despite his or her skin color, don't I deserve the same consideration for actions that are beyond my control? When someone sees a person with an affliction such as Muscular Dystrophy, Downs Syndrome, or mental retardation just to name a few, those affected individuals are generally given respect and consideration? But anytime I go in public, uncomfortable situations always occur. It may be the person that stares at me from around the corner and laughs, or the child that says "whats wrong with that weird man, or the person that blatantly says "you had better not be talking to me". Either way, the situations make me feel unwanted, further lower my already fragile self esteem, or make me angry and self defensive. I have tried to educate these ignorant individuals about my condition and convince them that my outbursts are beyond my control, but the end result is generally a blank stare or even a provocation of a fight . As bizarre as Corprolalia may be, why can't people understand that Tourette's is a real illness, and give me the same consideration that the aforementioned people are given? The forefathers of our great country wrote a constitution that gives every American several liberties, one of which is freedom of speech. It is a double standard; however, that one can say as they please, curse when they are angry, or even refer to one another with racial slogans. But when these same words involuntarily come from my mouth, everyone within hearing distance wants to censor me. This issue is just one of many that makes living with Tourette Syndrome unbearable. If everyone would get to know me for who I am without judging me based on my condition, they would find that I am a great person of reasonable intelligence, and would make a true and loyal friend. Maybe people shun me because they fear what they don't understand. Whatever the reason; however, it makes for a miserable and lonely life. I pray that the world will become more understanding of my condition before I stay home permanately and become totally disconnected from society. Maybe it's partially my fault for not doing more to promote public awareness of TS, but even if I made that my primary objective in life, there would always be the ignorant naysayers. So I will continue to stay at home and spare the public from the dreaded words that they themself use so freely. Maybe one day the world will become a place where Tourette Sufferers can enjoy the same liberties that "normal" people come to expect. But will that happen in my lifetime? The unfortunate answer is no.