Why one might ask would Tourette Syndrome cause a separation from Church, as this is a question I ask myself everyday. Anyone familiar with Tourette's is already aware of the disruptive nature of this condition, and it is even plausible that the resulting symptoms may 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 the ignorance and discrimination 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, but their responses have always been quite alarming.
Doesn'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):
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.
2.) Oh, so you have Tourette Syndrome. I understand that condition, but you don't shout profanities do you? (Does he really understand this disability).
3.) Feel free to come to church on Sunday, We'll just let the Lord figure it out.
4.) If you come to our church, we can put you in a sound proof booth.
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's is not Demonic Possession.
Considering that I am a Christian, my life has been very difficult with the void of a stable church in my life. But if this is the attitude of other "Christians", I will continue to worship God in the comfort of my own home. Many advances have been made in the public awareness of TS and most individuals understand it, or at least have 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 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
Keep On Ticcing
At The Lake
No One Can Hear Me Here
Monday, April 1, 2013
Monday, September 26, 2011
Tourette Syndrome. Will There Ever Be A Cure?
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'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 "filtering" 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'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'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'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'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's in animals, scientists would not be able to prove that they developed a true "Tourette Model". 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'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:
1.) Support education in your local community for this misunderstood condition.
2.) Join the Tourette Syndrome Association (http://tsa-usa.org/) and support them with donations or volunteer work.
3.) Encourage anyone you know with TS to register for brain tissue donation upon their death to: http://www.tsa-usa.org/news/BrainBank0806.htm.
4.) Show individuals with TS that they are accepted.
These are just a few ideas for easing the suffering of Tourette Syndrome for generations to come. I would personally do anything that would prevent TS affecting another individual in the manner I have been affected.
1.) Support education in your local community for this misunderstood condition.
2.) Join the Tourette Syndrome Association (http://tsa-usa.org/) and support them with donations or volunteer work.
3.) Encourage anyone you know with TS to register for brain tissue donation upon their death to: http://www.tsa-usa.org/news/BrainBank0806.htm.
4.) Show individuals with TS that they are accepted.
These are just a few ideas for easing the suffering of Tourette Syndrome for generations to come. I would personally do anything that would prevent TS affecting another individual in the manner I have been affected.
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