<?xml version='1.0' encoding='UTF-8'?><?xml-stylesheet href="http://www.blogger.com/styles/atom.css" type="text/css"?><feed xmlns='http://www.w3.org/2005/Atom' xmlns:openSearch='http://a9.com/-/spec/opensearchrss/1.0/' xmlns:blogger='http://schemas.google.com/blogger/2008' xmlns:georss='http://www.georss.org/georss' xmlns:gd="http://schemas.google.com/g/2005" xmlns:thr='http://purl.org/syndication/thread/1.0'><id>tag:blogger.com,1999:blog-2216081847676452432</id><updated>2024-10-04T20:58:24.876-05:00</updated><category term="Tourette Syndrome"/><category term="Corprolalia"/><category term="DBS"/><category term="Surgery"/><title type='text'>Keep On Ticcing</title><subtitle type='html'></subtitle><link rel='http://schemas.google.com/g/2005#feed' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/posts/default'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default?redirect=false'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/'/><link rel='hub' href='http://pubsubhubbub.appspot.com/'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><generator version='7.00' uri='http://www.blogger.com'>Blogger</generator><openSearch:totalResults>9</openSearch:totalResults><openSearch:startIndex>1</openSearch:startIndex><openSearch:itemsPerPage>25</openSearch:itemsPerPage><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-7964401945931372095</id><published>2013-04-01T16:32:00.000-05:00</published><updated>2013-04-01T16:32:08.981-05:00</updated><title type='text'>The Separation Of Church And Tourette&#39;s</title><content type='html'>Why one might ask would Tourette Syndrome cause a separation from Church,&amp;nbsp;as this is a question&amp;nbsp; I ask myself everyday. Anyone familiar with Tourette&#39;s is already aware of the disruptive nature of this condition, and it is even plausible that&amp;nbsp;the resulting symptoms may&amp;nbsp;be unaccepted in the workplace, the movie theater, or the library just to name a few. Why; however, would it be equally unacceptable in the Church? As a child of God I should be allowed to worship him in his own house, but&amp;nbsp;the&amp;nbsp;ignorance and discrimination&amp;nbsp;that occurs in a typical Church Congregation precludes me from doing so. I have interviewed many pastors with expectations that I would be welcomed in their Sunday Services,&amp;nbsp;but their responses have always been quite alarming. &lt;br /&gt;
Doesn&#39;t it seem perplexing that an individual with this horrible affliction should even have to ask permission to attend church? I have pointed this out to several ministers, but their outlook seems to follow a common thread as follows (as spoken by the clergy):&lt;br /&gt;
1.) You are welcome at my church; however, if the disruption causes a stir amongst the congregation, we may have a real problem on our hands.&lt;br /&gt;
2.) Oh, so you have Tourette Syndrome. I understand that condition, but you don&#39;t shout profanities do you? (Does he really understand this disability).&lt;br /&gt;
3.) Feel free to come to church on Sunday, We&#39;ll just let the Lord figure it out.&lt;br /&gt;
4.) If you come to our church, we can put you in a sound proof booth.&lt;br /&gt;
5.) If you come to our Sunday Services we can lay hands on you and anoint you with oil. Will everyone please realize that Tourette&#39;s is not Demonic Possession.&lt;br /&gt;
Considering that I am a Christian, my life has been very difficult with the void of a stable church in my life. But&amp;nbsp;if this is the&amp;nbsp;attitude of other &quot;Christians&quot;, I will continue to worship God in the comfort of my own home. Many advances have been made in the&amp;nbsp;public awareness of TS and most individuals understand it, or&amp;nbsp;at least have&amp;nbsp;heard of it. Where have all the Christians been during these public service announcements? It pains me to say that when it comes to worshipping the Lord, please accept me the way I was created or I will maintain a relationship with&amp;nbsp;God in private. If anyone that reads this post attends a church alongside someone with Tourette, please send me a comment with suggestions as to how it is managed. If not, please realize that there are many individuals in this same predicament that are missing out on something that should be a guaranteed right&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/7964401945931372095/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2013/04/the-separation-of-church-and-tourettes.html#comment-form' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/7964401945931372095'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/7964401945931372095'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2013/04/the-separation-of-church-and-tourettes.html' title='The Separation Of Church And Tourette&#39;s'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><thr:total>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-5758466321478994528</id><published>2011-09-26T18:16:00.002-05:00</published><updated>2011-10-12T17:13:29.750-05:00</updated><title type='text'>Tourette Syndrome. Will There Ever Be A Cure?</title><content type='html'>Tourette Syndrome is a very complicated condition that has baffled scientists and medical doctors for years. It is now widely understood that individuals with Tourette&#39;s have a defect in Dopamine Signaling related to a below normal density of neurons in the Striatum, and a high density of neurons in the internal segments of the Globus Pallidus within the Basal Ganglia of the brain. The Basal Ganglia serves as a &quot;filtering&quot; mechanism in a normal brain, with the purpose of preventing unwanted thoughts from being vocalized. This may explain why individuals suffering with TS experience Corprolalia, as they have a defect in this highly sophisticated mechanism. A further advance was made in the understanding of Tourette&#39;s in 2005, when a geneticist at the Yale School of Medicine identified a defective gene in a group of Tourette sufferers. This gene, identified as SLITRK1, was found to be mutated in this group of study patients in their Basal Ganglia, Cortex, and Frontal Lobes. This was the first significant advance in Tourette&#39;s Research in decades; however, it provided no real value for improved treatment regimens or a means for a cure. Current treatment options for Tourette Syndrome focus on Dopamine Mechanisms such as the interaction between Dopamine and Glutamate, Dopamine and Serotonin, and Dopamine and GABA (Gamma-Aminobutyric Acid). Drugs that play a role in the inhibitory mechanism include, but are not limited to Haldol, Orap, Seroquel, Zyprexa, Geodon, and Abilify just to name a few. I have visited these drugs and many others on multiple occasions, only to find that their adverse reactions far outweigh any therapeutic benefits. This group of drugs can cause fatal complications as well, including Tardive Dyskinesia and Neuroleptic Malignant Syndrome. The failure of any pharmacologic agent to ease my symptoms is what prompted me to not only seek out, but undergo Bilateral Deep Brain Stimulation in May 2006. As previous followers of my Blog are aware, this highly invasive surgical procedure did nothing to treat my extreme case of Tourette&#39;s. This brings me to the focus of my article, will there ever be a legitimate treatment or even cure for Tourette Syndrome? The answer to this question is quite bleak, and for many reasons. In order to find a viable treatment much less a cure, scientists must develop an animal model for this condition. Only then will they be able to perform the level of research that would be too dangerous for human subjects to endure. Researchers have developed animal models for other neurologic conditions such as Parkinson&#39;s Disease, by injecting the brains of rats with noxious compounds such as Paraquat and Rotenone, but the science of generating such a model for TS is beyond the scope of current medical technology. Even if a compound was discovered that mimicked Tourette&#39;s in animals, scientists would not be able to prove that they developed a true &quot;Tourette Model&quot;. This is due in part to the complexity of Tourette Syndrome and the degree of variability between TS patients. How would anyone really know if an animal had Tourette&#39;s in the lab, when animals lack the cognition of a human being? The final obstacle to Tourette research is the difficulty of enrolling large groups of individuals with TS for clinical trials to assess therapy options, as well as a lack of post-mortem brain tissue of individuals affected with this disorder. In summary, the best means for supporting research and understanding for Tourette Syndrome is as follows:&lt;br /&gt;
1.) Support education in your local community for this misunderstood condition.&lt;br /&gt;
2.) Join the Tourette Syndrome Association (&lt;a href=&quot;http://tsa-usa.org/&quot;&gt;http://tsa-usa.org/&lt;/a&gt;) and support them with donations or volunteer work.&lt;br /&gt;
3.) Encourage anyone you know with TS to register&amp;nbsp;for brain tissue donation upon their death to: &lt;a href=&quot;http://www.tsa-usa.org/news/BrainBank0806.htm&quot;&gt;http://www.tsa-usa.org/news/BrainBank0806.htm&lt;/a&gt;.&lt;br /&gt;
4.) Show individuals with TS that they are accepted.&lt;br /&gt;
These are just a few ideas for easing the suffering of Tourette Syndrome for generations to come. I would personally do anything&amp;nbsp;that would&amp;nbsp;prevent TS affecting another individual in the manner I have been affected.</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/5758466321478994528/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2011/09/tourette-syndrome-will-there-ever-be.html#comment-form' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/5758466321478994528'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/5758466321478994528'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2011/09/tourette-syndrome-will-there-ever-be.html' title='Tourette Syndrome. Will There Ever Be A Cure?'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-4397738569231287540</id><published>2011-09-26T17:06:00.000-05:00</published><updated>2011-09-26T17:06:37.926-05:00</updated><title type='text'>God&#39;s Creatures</title><content type='html'>I would like to share an experience that would forever change the way that I view the world. Several weeks ago while sitting on my front porch, something &quot;caught my eye&quot;. It was a Deer Fawn covered in spots, innocently feeding on vegetation near the edge of a heavily forested area. I excitedly ran into the house to grab my camera, all the while expecting the Fawn to be gone before I could do so. Much to my surprise the Deer was still feeding when I returned, unaware of my presence. I began to approach the Deer hoping to get a close-up of his beauty, but I expected him to &quot;bolt&quot; at any time considering that my Tourette&#39;s always precedes me. Despite my loud vocalizations and abrupt tics; however, the Fawn seemed unconcerned. When I was at an appropriate distance to begin photographing the deer, an unexpected chain of events rapidly unfolded. The Fawn began to run towards me as would a dog, with a series of expressions and posturing that conveyed the message: Who and what are you? Are you friend or foe? I stood my ground even though my Tourette&#39;s did not, and began to ready my camera for a once in a life time photograph. The Deer; however, had different intentions. He continued towards me until he was about a foot away, and I presented my hand in a palms up position to show him that I meant no harm. I was shocked when the Deer reached forward and gently licked my hand. By this time my Tourette&#39;s was wildly out of control, but I managed to compose myself long enough to get a series of close range photographs. Within seconds; however, I vocalized so loudly that the Deer headed for cover. I returned to my house to &quot;show off&quot; the pictures to my wife, and was grateful that I had the photographic evidence to document the encounter, because without it the story would have been impossible to prove. I have thought about this experience for quite some time, but it wasn&#39;t until recently that I began to understand the real meaning of the close encounter.&lt;br /&gt;
&lt;div class=&quot;separator&quot; style=&quot;clear: both; text-align: center;&quot;&gt;&lt;a href=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-OPAmk6NBuiMX0XwX1dRyIHfkoi5zBV1l-zNbAL1oag1coC_bpgFcuOhzlpzcu_JAYTxhk4x_6AzGsauIubbvMAL0TAPdGUh7qvUJdM-9-CaewJAFdAeJal22yAsZyC33UsPkyQB0-98/s1600/DSC02069.JPG&quot; imageanchor=&quot;1&quot; style=&quot;clear: left; float: left; margin-bottom: 1em; margin-right: 1em;&quot;&gt;&lt;img border=&quot;0&quot; height=&quot;240px&quot; src=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-OPAmk6NBuiMX0XwX1dRyIHfkoi5zBV1l-zNbAL1oag1coC_bpgFcuOhzlpzcu_JAYTxhk4x_6AzGsauIubbvMAL0TAPdGUh7qvUJdM-9-CaewJAFdAeJal22yAsZyC33UsPkyQB0-98/s320/DSC02069.JPG&quot; width=&quot;320px&quot; /&gt;&lt;/a&gt;&lt;/div&gt;When faced with an individual having Tourette Syndrome, many will say they are afraid of what they don&#39;t understand. I have had multiple encounters in my lifetime with people that refuse to be my friend because of preconceived notions regarding my TS related Corprolalia. To quote the highly regarded expert on Tourette Syndrome; Dr. Oliver Sacks: &quot;I have never met a person with Tourette Syndrome that I didn&#39;t like&quot;. People with this terribly misunderstood illness are very likeable individuals, and many have missed out on the opportunity to experience a quality friendship like someone with TS could have provided. Humans have the tendency to shun anyone that is labeled as being &quot;different&quot;, and this is a very unfortunate shortcoming. We all have a lot that we could learn from observing God&#39;s Creatures outside of our genus. It clearly states in the Bible that God created animals to serve mankind, but I believe they fulfill an even higher purpose. To illustrate this point, consider my encounter with the Fawn. Deer are born with an uncanny ability to recognize danger using their incredible senses of sight, smell, and hearing. Even though the Fawn, whom I have since affectionately named &quot;Frank&quot;, recognized that I could have been danger, he objectively approached me even as I was making loud noises and sharp movements. He put all this aside and attempted to look beyond the confusion to determine who and what I was, and as a result, realized that I posed him no harm and actually I was a friend. If humans could be more like animals, the world would be a much better place to live. It is very ironic that Frank did not understand what I was or why I was making loud noises, but he did not let that get in the way of our brief encounter. The next time you see an animal consider that hatred and bigotry does not exist in their kingdom, so why does it exist in ours? If we modeled our world after theirs, we would all make great strides in understanding people that are different from the &quot;norm&quot;. This is the real reason that God put animals on our planet. God has never been unhappy with the animal kingdom, but he has been very unhappy with the human race. The next time you encounter someone with a disability such as Tourette Syndrome, try to look beyond the affliction and get to know the real person. You will be glad that you did.</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/4397738569231287540/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2011/09/gods-creatures.html#comment-form' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/4397738569231287540'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/4397738569231287540'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2011/09/gods-creatures.html' title='God&#39;s Creatures'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><media:thumbnail xmlns:media="http://search.yahoo.com/mrss/" url="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-OPAmk6NBuiMX0XwX1dRyIHfkoi5zBV1l-zNbAL1oag1coC_bpgFcuOhzlpzcu_JAYTxhk4x_6AzGsauIubbvMAL0TAPdGUh7qvUJdM-9-CaewJAFdAeJal22yAsZyC33UsPkyQB0-98/s72-c/DSC02069.JPG" height="72" width="72"/><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-526645294201049666</id><published>2011-01-24T03:30:00.001-06:00</published><updated>2011-01-26T15:43:43.704-06:00</updated><title type='text'>Tourette Syndrome and Deep Brain Stimulation Part 2- When is Enough Enough?</title><content type='html'>&lt;div style=&quot;border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;&quot;&gt;For followers and readers of my Blog it is &quot;old news&quot; that I had a procedure called Deep Brain Stimulation (DBS) in an attempt to alleviate some of my Tourette Symptoms. On January 18th of this year I had a follow-up&amp;nbsp;appointment with my Neurosurgeon to discuss my progress with this experimental treatment. During the visit I expressed my frustration with DBS and its&#39; failure to lessen my Tourette&#39;s most outward signs, the worst of which is the utterance of profane and often racial remarks (Corprolalia).&amp;nbsp;During the appointment&amp;nbsp;my physician and I were engaged in conversation regarding the placement of&amp;nbsp;the electrodes deep within my brains delicate structures, and I mentioned to him&amp;nbsp;an event that occured&amp;nbsp;during the original surgical intervention that has left me wondering: what if things had transpired differently? What if my electrodes were in a slightly different location than they currently&amp;nbsp;are in? These questions stem from an incident&amp;nbsp;which I vividly recall when the electrodes were being inserted in the&amp;nbsp;operating room, as I lyed there&amp;nbsp;wide awake with no sedation or analgesia, my head screwed to a frame and the frame bolted to the operating table. My tics were so bad at this time that you could visibly see the table shaking, and the vocalizations were so loud that I wondered if I was compromising the surgeons concentration. As the drilling of my skull was finalized, and the right electrode was about to be inserted in the burrhole, I remembered my previous pre-op discussions with the doctor regarding the placement of the wire. &lt;/div&gt;&lt;table align=&quot;center&quot; cellpadding=&quot;0&quot; cellspacing=&quot;0&quot; class=&quot;tr-caption-container&quot; style=&quot;margin-left: auto; margin-right: auto; text-align: center;&quot;&gt;&lt;tbody&gt;
&lt;tr&gt;&lt;td style=&quot;text-align: center;&quot;&gt;&lt;a href=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLt6thAfOhihsS3oTj2d2PWcMfD3IktmunldXbSaGyjN-XVQHNO-2epShts4bmiyUhVLAWwRh45qrmsQusaPl7bY4wT12iIGaneyFVCmJ-7FunSCx51lmtuHPC18zDw8c3h58hcy6I1fg/s1600/skull-hole%255B1%255D.jpg&quot; imageanchor=&quot;1&quot; style=&quot;margin-left: auto; margin-right: auto;&quot;&gt;&lt;img border=&quot;0&quot; height=&quot;179&quot; s5=&quot;true&quot; src=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLt6thAfOhihsS3oTj2d2PWcMfD3IktmunldXbSaGyjN-XVQHNO-2epShts4bmiyUhVLAWwRh45qrmsQusaPl7bY4wT12iIGaneyFVCmJ-7FunSCx51lmtuHPC18zDw8c3h58hcy6I1fg/s320/skull-hole%255B1%255D.jpg&quot; width=&quot;320&quot; /&gt;&lt;/a&gt;&lt;/td&gt;&lt;/tr&gt;
&lt;tr&gt;&lt;td class=&quot;tr-caption&quot; style=&quot;text-align: center;&quot;&gt;&lt;strong&gt;&lt;em&gt;Preparing for electrode insertion&lt;/em&gt;&lt;/strong&gt;&lt;/td&gt;&lt;/tr&gt;
&lt;/tbody&gt;&lt;/table&gt;&lt;div style=&quot;border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;&quot;&gt;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; Before the procedure he explained to me that the electrode would be slowly advanced into my brain until a&amp;nbsp; pre-determined &quot;target&quot; area was reached (this area was identified by a pre-op CT Scan and MRI, after which the&amp;nbsp;test results were merged using a powerful computer program, and the area was identified and marked on the head frame that rendered me motionless). The doctor also explained to me that this &quot;target&quot; was no bigger than a small grain of rice, and&amp;nbsp;its&#39; location was paramount to me seeing any potential positive outcome from the surgical procedure. Upon inserting the right electrode into the aforementioned burrhole, I can distinctly&amp;nbsp;remember my Neurosurgeon counting down the electrode&#39;s course through my brain; &quot;6mm to desired target, 5mm&amp;nbsp;to desired target&quot;, and so on. I can remember holding my breath with all the excitement of a child on Christmas Eve, and when he announced &quot;target reached&quot;, I burst into tears and my tics and vocalizations immediately ceased. I looked around the operating room&amp;nbsp;in disbelief as the nurses, doctors and technicians breathed a sigh of relief. No sooner than this had occurred,&amp;nbsp;&amp;nbsp;I began sobbing uncontrollably and my vital signs took a turn for the worse. I can remember one nurse saying &quot;he&#39;s not looking good&quot;, and another one said &quot;his blood pressure isn&#39;t fairing well&quot;. What was happening to me, I thought? I have no Tourette Symptoms&amp;nbsp;and everyone is overacting. My surgeon spoke to me; &quot;Your&amp;nbsp;lead (electrode) is in&amp;nbsp;too far&quot;. &quot;We are going to&amp;nbsp;withdraw it&amp;nbsp;1mm because it is apparently in an area that is not safe, and monitor your vital signs very closely&quot;.&amp;nbsp;By the time he said this the electrode was repositioned, my crying stopped, and my tics and vocalizations returned with full recourse. Also at this time my vital signs began to stabilize, and my Neurosurgeon said that he would leave the electrode in its&#39; current position even though this would abandon the predetermined target,&amp;nbsp;and that is where it remains today.&lt;/div&gt;&lt;div style=&quot;border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;&quot;&gt;&lt;div style=&quot;border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;&quot;&gt;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;This is where my doctor and I&#39;s conversation continues at the January 18th appointment. I disscussed with him&amp;nbsp; the possibility of&amp;nbsp;undergoing surgery again in order to advance the electrode 1mm to the original target; and keeping an open mind as he always does, he said he would thoroughly revisit my medical records and see if this was a possibility. I told him that I firmly believe the original target was the appropriate location, and what he had assumed was a bad&amp;nbsp;placement because of my emotional changes, were actually my tears of joy&amp;nbsp;from the weight of &amp;nbsp;living with Tourette Syndrome for 40 years suddenly&amp;nbsp;being lifted from my shoulders. He explained the risks of performing the surgery again compared with the potential rewards, and said that he would get back with me in a&amp;nbsp;short time with his opinion regarding such. That leaves my wife and I with some difficult decisions to make. Should I repeat the surgery even though the potential risks outweigh the possible benefits? Or should I just abandon this&amp;nbsp;idea alltogether and live with the uncertainty of always wondering what if? Whatever decision we make; however, I will have to deal with for the rest of my life. I know that&amp;nbsp;through prayer the right answer will be revealed to me, and if enough is enough that is good enough for me.&lt;/div&gt;&lt;/div&gt;&lt;div class=&quot;separator&quot; style=&quot;border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;&quot;&gt;&lt;/div&gt;&lt;div class=&quot;separator&quot; style=&quot;border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;&quot;&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/526645294201049666/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2011/01/tourette-syndrome-and-deep-brain.html#comment-form' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/526645294201049666'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/526645294201049666'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2011/01/tourette-syndrome-and-deep-brain.html' title='Tourette Syndrome and Deep Brain Stimulation Part 2- When is Enough Enough?'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><media:thumbnail xmlns:media="http://search.yahoo.com/mrss/" url="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLt6thAfOhihsS3oTj2d2PWcMfD3IktmunldXbSaGyjN-XVQHNO-2epShts4bmiyUhVLAWwRh45qrmsQusaPl7bY4wT12iIGaneyFVCmJ-7FunSCx51lmtuHPC18zDw8c3h58hcy6I1fg/s72-c/skull-hole%255B1%255D.jpg" height="72" width="72"/><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-7811124294721375008</id><published>2010-12-15T11:24:00.006-06:00</published><updated>2010-12-15T14:13:57.630-06:00</updated><title type='text'>Disabled but Able</title><content type='html'>﻿&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; &lt;img alt=&quot;&quot; border=&quot;0&quot; height=&quot;1&quot; src=&quot;http://www.assoc-amazon.com/e/ir?t=keeontic-20&amp;amp;l=bil&amp;amp;camp=213689&amp;amp;creative=392969&amp;amp;o=1&amp;amp;a=B001FA1O0O&quot; style=&quot;border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0px; padding-bottom: 0px !important; padding-left: 0px !important; padding-right: 0px !important; padding-top: 0px !important;&quot; width=&quot;1&quot; /&gt;Does a disability really need to exclude one from being a &quot;functional&quot; member of society? Is the disability an obvious one like Tourette Syndrome or Parkinson&#39;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&amp;nbsp;the severity of the disorder. According to the Americans with Disabilities Act (ADA), a disability is defined as:&lt;/span&gt; &lt;br /&gt;
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&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;(A)&amp;nbsp;&amp;nbsp;a physical or mental impairment that substantially limits one or more of the major life activities of such individual;&lt;/span&gt;&lt;br /&gt;
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&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;(B)&amp;nbsp;a record of such an impairment; or&lt;/span&gt;&lt;br /&gt;
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&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;(C) being regarded as having such an impairment.&lt;/span&gt;&lt;br /&gt;
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&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;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:&lt;/span&gt;&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;br /&gt;
&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;(1) that (s)he has a physical or mental impairment&lt;/span&gt;&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;br /&gt;
&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;(2) that impairment substantially limits said individual&lt;/span&gt;&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;br /&gt;
&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;(3) one or more major life activities are affected.&lt;/span&gt;&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;br /&gt;
&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;span style=&quot;font-family: Arial, Helvetica, sans-serif;&quot;&gt;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 &quot;disability.&quot;&lt;/span&gt;&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;span style=&quot;font-family: Arial;&quot;&gt;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&amp;nbsp;is Tourette Syndrome, as even though this condition meets all definitions of a disability as outlined in the ADA, certain contradictions arise&amp;nbsp;with reference to TS. Considering that Tourette Syndrome can be disruptive due to vocalizations (in particular Corprolalia), and the fact that the&amp;nbsp;ADA does not disallow discrimination for any &quot;disruptive conditions&quot;, employers can and will discriminate against individuals with TS even though this affliction meets all definitions of an ADA Disability.&amp;nbsp;Is it&amp;nbsp;really a surprise that&amp;nbsp;our government enacts legislation that is proposed to prevent discrimination in the workplace, leads the &quot;protected&quot; disability groups to feel they are&amp;nbsp;protected from such actions,&amp;nbsp;and leaves the affected individual&amp;nbsp;with feelings of hopelessness and despair when a discriminatory act occurs?&lt;/span&gt;&lt;br /&gt;
&lt;span style=&quot;font-family: Arial;&quot;&gt;&lt;strong&gt;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; A&amp;nbsp;note to individuals with Tourette&#39;s:&lt;/strong&gt; If you have Corprolalia, annoying tics, or troublesome vocalizations don&#39;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!&lt;/span&gt;&lt;/div&gt;&lt;div style=&quot;text-indent: 2em;&quot;&gt;&lt;br /&gt;
&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/7811124294721375008/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/disabled-but-able.html#comment-form' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/7811124294721375008'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/7811124294721375008'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/disabled-but-able.html' title='Disabled but Able'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-8476911457506551843</id><published>2010-12-09T03:35:00.000-06:00</published><updated>2010-12-09T12:44:56.470-06:00</updated><category scheme="http://www.blogger.com/atom/ns#" term="DBS"/><category scheme="http://www.blogger.com/atom/ns#" term="Surgery"/><category scheme="http://www.blogger.com/atom/ns#" term="Tourette Syndrome"/><title type='text'>Tourette Syndrome and Deep Brain Stimulation</title><content type='html'>DBS (Deep Brain Stimulation)&amp;nbsp;&amp;nbsp;was approved by the FDA for Parkinson&#39;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&amp;nbsp;UK, and The United States. To date; however, DBS has not been approved by the FDA&amp;nbsp;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&#39; effectiveness. DBS is a surgical treatment in which a device called a neurostimulator delivers tiny electrical signals via implanted electrodes&amp;nbsp;to the areas of the brain that control movement. The DBS system consists of three parts:&lt;br /&gt;
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&lt;li&gt;A thin, insulated wire called a lead, or electrode that is placed into the brain &lt;/li&gt;&lt;br /&gt;
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&lt;li&gt;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 &lt;/li&gt;&lt;br /&gt;
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&lt;li&gt;Another thin insulated wire called an extension that connects the lead to the neurostimulator &lt;/li&gt;&lt;br /&gt;
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The only differentiation between DBS for Tourette&#39;s and for other movement disorders is the placement of the electrodes deep within the brains structures. For the treatment of Parkinson&#39;s and Dystonia the &quot;target area&quot; 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. &lt;br /&gt;
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&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&lt;strong&gt;During Surgery&lt;/strong&gt;&lt;br /&gt;
&lt;div class=&quot;separator&quot; style=&quot;clear: both; text-align: center;&quot;&gt;&lt;a href=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZK4UDcbjkTYRrGr3JFwxVCR0frG7C4a113NzMwKqvvGEuuRaWGo2dXCKaiyp9dcSM3g8W7K9O-OgAFxboTN9wN18vNSqBOHhhbjw4MEKe8_Q2IGQS3hJcWcVZn2bmXORpHHgnAb8Sydw/s1600/im04%255B1%255D.jpg&quot; imageanchor=&quot;1&quot; style=&quot;margin-left: 1em; margin-right: 1em;&quot;&gt;&lt;img border=&quot;0&quot; height=&quot;320&quot; n4=&quot;true&quot; src=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZK4UDcbjkTYRrGr3JFwxVCR0frG7C4a113NzMwKqvvGEuuRaWGo2dXCKaiyp9dcSM3g8W7K9O-OgAFxboTN9wN18vNSqBOHhhbjw4MEKe8_Q2IGQS3hJcWcVZn2bmXORpHHgnAb8Sydw/s320/im04%255B1%255D.jpg&quot; width=&quot;215&quot; /&gt;&lt;/a&gt;&lt;/div&gt;&lt;div class=&quot;separator&quot; style=&quot;clear: both; text-align: center;&quot;&gt;&lt;br /&gt;
&lt;/div&gt;&lt;div class=&quot;separator&quot; style=&quot;clear: both; text-align: center;&quot;&gt;&lt;strong&gt;Post Operative Picture&lt;/strong&gt;&lt;/div&gt;&lt;div class=&quot;separator&quot; style=&quot;clear: both; text-align: center;&quot;&gt;&lt;a href=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWStr6KE1x0VviygFtbGzQsCMg2jthlKVaiNVclSQiRrOkUjOGvQcB6O3vPQ2Q7ms0hDxKygRsJfbqXx0YAOwI4F7klJ5WOzmN_1syzLK_KjR1XZspRFIpOcdaKFPNlubbKKA9p5yt0ds/s1600/DSC00983.JPG&quot; imageanchor=&quot;1&quot; style=&quot;margin-left: 1em; margin-right: 1em;&quot;&gt;&lt;img border=&quot;0&quot; height=&quot;240&quot; n4=&quot;true&quot; src=&quot;https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWStr6KE1x0VviygFtbGzQsCMg2jthlKVaiNVclSQiRrOkUjOGvQcB6O3vPQ2Q7ms0hDxKygRsJfbqXx0YAOwI4F7klJ5WOzmN_1syzLK_KjR1XZspRFIpOcdaKFPNlubbKKA9p5yt0ds/s320/DSC00983.JPG&quot; width=&quot;320&quot; /&gt;&lt;/a&gt;&lt;/div&gt;In late 2005 I became interested in DBS for the treatment of my Tourette&#39;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&amp;nbsp;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: &lt;a href=&quot;http://www.youtube.com/watch?v=izKL1mVXF7c&amp;amp;feature=player_embedded&quot;&gt;DBS Procedure Animation&lt;/a&gt;&lt;br /&gt;
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&amp;nbsp;with &quot;flying colors&quot;.&lt;br /&gt;
&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; Approximately one month&amp;nbsp; after the procedure I returned to my Neurosurgeon to have the devices activated. The delay between the procedure and device activation allowed any &quot;swelling&quot; 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 &quot;adjustments&quot;. 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.&lt;br /&gt;
&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; After many return&amp;nbsp;visits to have these &quot;adjustments&quot; 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&amp;nbsp;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.&lt;br /&gt;
&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp;&amp;nbsp; To sum it all up: I had the surgery as a &quot;last ditch effort&quot; 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&amp;nbsp;in my case anyway. Maybe in the future; however, continuing research may reveal a better &quot;target&quot; area&amp;nbsp;for the electrode placement, which may provide some relief for Tourette Sufferers. But I don&#39;t feel all has been lost. At the very least I have helped the medical community in its&#39; ongoing attempts to control ailments like Tourette Syndrome. I am very fortunate; however, that my efforts did not lead to&amp;nbsp;long term complications that would make TS pale in comparison.&lt;br /&gt;
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&lt;div align=&quot;center&quot;&gt;﻿&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/8476911457506551843/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/tourette-syndrome-and-deep-brain.html#comment-form' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/8476911457506551843'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/8476911457506551843'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/tourette-syndrome-and-deep-brain.html' title='Tourette Syndrome and Deep Brain Stimulation'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><media:thumbnail xmlns:media="http://search.yahoo.com/mrss/" url="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZK4UDcbjkTYRrGr3JFwxVCR0frG7C4a113NzMwKqvvGEuuRaWGo2dXCKaiyp9dcSM3g8W7K9O-OgAFxboTN9wN18vNSqBOHhhbjw4MEKe8_Q2IGQS3hJcWcVZn2bmXORpHHgnAb8Sydw/s72-c/im04%255B1%255D.jpg" height="72" width="72"/><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-4037367974276785558</id><published>2010-12-08T02:06:00.000-06:00</published><updated>2010-12-08T07:56:32.378-06:00</updated><title type='text'>Tourette Syndrome-Why Its Imperative To Obtain An Early Diagnosis</title><content type='html'>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 &quot;shut up&quot;, and would leave me lying there crying and wondering to myself why I couldn&#39;t be silent. I remember often wondering why I couldn&#39;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&#39;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.&lt;br /&gt;
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 &quot;name&quot; 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 &quot;emotional scars&quot; 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&#39;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&#39;t want what occurred to me to ever happen to another child again. Please be your childs advocate for his/her sake.</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/4037367974276785558/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/tourette-syndrome-why-its-imperative-to.html#comment-form' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/4037367974276785558'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/4037367974276785558'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/tourette-syndrome-why-its-imperative-to.html' title='Tourette Syndrome-Why Its Imperative To Obtain An Early Diagnosis'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-2644613260496075010</id><published>2010-12-08T01:47:00.000-06:00</published><updated>2010-12-08T01:57:40.265-06:00</updated><category scheme="http://www.blogger.com/atom/ns#" term="Tourette Syndrome"/><title type='text'>Tourette Syndrome-Why Is It So Often Misunderstood?</title><content type='html'>&lt;strong&gt;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&lt;/strong&gt;&lt;br /&gt;&lt;br /&gt;&lt;strong&gt;&lt;/strong&gt;&lt;br /&gt;&lt;br /&gt;Dr. Oliver Sacks M.D., renowned Neurologist and Author of Awakenings once said &quot;Tourette Syndrome is easily the most misunderstood illness&quot;. 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&#39;s; however, they are not as fortunate. They will suffer segregation from their peers that will cause emotional &quot;scarring&quot; 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 &quot;ignorant&quot; 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&#39;s have feelings also, and that they deserve to grow up with the confididence and resolve that a &quot;normal&quot; child would have.</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/2644613260496075010/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/tourette-syndrome-why-is-it-so-often.html#comment-form' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/2644613260496075010'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/2644613260496075010'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/tourette-syndrome-why-is-it-so-often.html' title='Tourette Syndrome-Why Is It So Often Misunderstood?'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2216081847676452432.post-5985112991875504170</id><published>2010-12-05T04:20:00.000-06:00</published><updated>2010-12-06T06:33:50.388-06:00</updated><category scheme="http://www.blogger.com/atom/ns#" term="Corprolalia"/><category scheme="http://www.blogger.com/atom/ns#" term="Tourette Syndrome"/><title type='text'>Corprolalia-The Dark Side Of Tourette Syndrome</title><content type='html'>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&#39;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 &quot;whats wrong with that weird man, or the person that blatantly says &quot;you had better not be talking to me&quot;. 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&#39;t people understand that Tourette&#39;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&#39;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&#39;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 &quot;normal&quot; people come to expect. But will that happen in my lifetime? The unfortunate answer is no.</content><link rel='replies' type='application/atom+xml' href='http://seldomquietneverheard.blogspot.com/feeds/5985112991875504170/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/corprolalia-dark-side.html#comment-form' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/5985112991875504170'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2216081847676452432/posts/default/5985112991875504170'/><link rel='alternate' type='text/html' href='http://seldomquietneverheard.blogspot.com/2010/12/corprolalia-dark-side.html' title='Corprolalia-The Dark Side Of Tourette Syndrome'/><author><name>Keith</name><uri>http://www.blogger.com/profile/15058127261654270623</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='32' height='24' src='//blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6S7FUtaV9FK94-KxeiaLYe9joe8edzzReTBDJAXQ1GA1ocQnvymzX4-8s9jylfWUZCEkNruAU2Oay1LlrYelEX1BOpBBmCo5NWyS2p6NwJzQDSuj9Bc6bfyV9yhlQQh0/s220/MVC-174S.JPG'/></author><thr:total>0</thr:total></entry></feed>