Tourette syndrome is a neurological disorder characterized by motor tics (rapid, repeated, and purposeless involuntary movements of various muscle groups) and vocal tics (involuntary grunts, barks, obscenities, and other sounds). This debilitating disorder often begins in adolescence and is associated with attention problems, compulsive behavior, and obsessional thoughts. 

About one in 2,500 people suffer from Tourette syndrome in its most severe form, and about one in 800 have milder or partial symptoms. Sufferers are treated with antipsychotic drugs, clonidine, or pimozide, but many get little relief from these drugs. 

Neil Schafer, who tells his story here, has suffered from Tourette syndrome since he was a boy. We have had the opportunity to observe him for ten minutes before and after he smoked three puffs of marijuana. Before he smoked, his head was jerking to the side and he was making sniffing or grunting sounds every few seconds. Within minutes of smoking, the tics had completely disappeared. He says the effect lasts for three to four hours.  

My name is Edward Neil Schafer. I am nineteen years old, and I suffer from Tourette Syndrome.

I have had Tourette syndrome almost all of my life. My major symptoms started showing up around the third grade. During the younger grades of school I got into a lot of trouble because of my Tourette syndrome.

During the third grade when I was eight years old I started having trouble in class with the teacher. She would yell at me because I would either be tapping my pencil, or tapping my foot, or making grunts and squeaking noises. My Mom and Dad took me to a small-town doctor, Dr. Victor Connell, who was close to us. He sent me to Plymouth Hospital in Indiana for some tests and then concluded that I "might" have Tourette syndrome. During that time in my life I remember that I was scared because I kept making all these weird noises and hurting myself, and I couldn't control it. And I knew my parents were scared too, especially when I started slamming my head up and down and bruising my chest with my chin by jerking. 

They were afraid I might damage my neck so they made me wear a neck brace (a soft one). I also remember all the kids thought I was tripping. So I never really had many friends except Tommy. He's like a brother to me. I love him to death. I've known him all my life. He's going to be a police officer sometime, but has no problem with my Tourette syndrome. Anyway, along with the neck brace I had to wear a mouthpiece so I wouldn't break my teeth by slamming my head down.

I took a lot of shit from the kids. My Dad would talk to the teacher about that, then things would cool down for a little bit, then start right back up again. 

When I was nine years old Mom and Dad took me to a neurologist in Fort Wayne, Indiana. His name was Dr. Ottinger. He looked at me for a while then gave Mom and Dad a lot of literature on Tourette syndrome and said that there was a big possibility I might have it .

In the fifth grade I started taking Tranxene (clorazepate) 7.5 mg to "control" my tics. I turned into a different person. I didn't care about nothing. Then I got on such a dosage that I didn't do anything but sit and sleep. And I always felt angry, but yet embarrassed. 

In about seventh grade the Tranxene started to not work as well. I started mimicking the teachers, tapping my pencils harder to the point of breaking them, blinking my eyes really bad, rolling my lips, shaking my head, and constantly getting up and down out of the chairs.

Mom and Dad got worried bad so they took me to Dr. Hoyer in Lafayette, Indiana. He diagnosed me with a full-blown case of Tourette syndrome and put me on clonidine 0.1 mg. I had to build myself into it until I was taking three full pills a day. At that point my life was not mine. I couldn't remember anything. I didn't do anything. I flunked everything in school, got kicked out for sleeping in class. I was so sad and full of confusion and hate. It felt like I was in an invisible glass bottle looking out at the world wishing I was there.

Then the clonidine wasn't working so well so I started taking Haldol (haloperidol) 0.5 mg along with the clonidine. I was a zombie by then. I didn't function. People functioned me instead because I didn't know what to do. 

I had severe trouble in school to the point where my Mom and Dad hired an attorney just to get the school off my back. I was put under special education. We had about $3,000 in attorney fees. At that point in time I went back to Dr. Hoyer and he wanted me to take Orap (pimozide), but before I took it I had to have my heart checked, because people with a weak heart can't take that. I was like no way. It stops here. My parents agreed. I didn't take the Orap then. I just got fed up with all the pills and said fuck it, I ain't taking no more pills. By then I turned into a mean ass. I hated everyone. Then I seemed to fit into a rough crowd. Actually a bunch of kids fed up with society's shit. 

Anyway, a brother named Paul one night noticed my mood and asked if I wanted to get high. I was a little nervous at first but hell why not. I remember that first time I was so mellow and actually got pretty happy. Well, I was twelve or thirteen then and I've smoked pot ever since. But for a different reason now. I used to get high to party. When I was about sixteen I noticed one night I got high and my tics weren't ticking. I didn't know what to think. Could this be it? I don't know.

Well, I got busted with a bowl by the Charleston cops. Funny how they can illegally search you, your van, and play with your testicles and still give you a ticket. When I got it I knew I'd have to tell my parents. Mom first, she wouldn't hit me, I knew that much. I told her why I smoked pot now and why I had the bowl on me. She was scared a little and wanted proof. I showed her. She then believed me. Now Dad. He thought I was full of shit and just about kicked my ass, but Mom told him to see for himself. I showed him by taking a couple of hits off my one hitter. My tics almost completely ceased. He couldn't believe his eyes. I could still function, laugh, talk complete sentences without squeaking or growling. I had both of their support then.

Since I smoked pot and my parents were cool about it, I could focus on school better. My grades went up. The more pot I smoked, the better I could think, especially since I had no pills in me. Well, four weeks before graduation I moved in with my brother Danny. Their rules were, no pot in the house, and I couldn't be in the house if I was high. So I left it in my VW van. I got high in my van by myself, and when I went to school I left it there. Well, the morning I just got a three gram bag of dark bud, the South Whitley police force decided to sic fifteen dogs on my van and I got busted with three grams of weed. So I got kicked out of school two weeks before graduation. Take a guess how I felt. So close but not today. Well, after summer I went to an alternative school and got my diploma in October of 1996. I got screwed out of turning my tassel and walking down the aisle to get my diploma. 

I still live with my Dad and he still helps me get my marijuana even though we can't afford to get it like I need it. We get by, but I can't get a job because of drug tests. I feel it is a blessing from God that he has given us this medicine to heal so many illnesses, especially helping my Tourette syndrome that the pills never even touched.

I feel like a normal human being. I live a quiet life out in the country. I don't go out much except to go camping. I don't cause trouble, and I'm not violent. I don't want to go to prison for something that truly helps my Tourette syndrome and helps me function. I believe and so does all my family that marijuana is the best medicine I have ever had. None of my family members drink or do drugs or even smoke cigarettes. I love life now, except for the fear of being arrested for something I have to have. 

The bulletin of the Arbeitsgemeinschaft Cannabis als Medizin recently published the following summary of a new study of Tourette syndrome:

A structured interview was published in ‘Nervenarzt’, which questioned 47 patients [with Tourette syndrome] of the Medical faculty of Hannover/Germany about their use of alcohol, nicotine and marijuana and the effects of these substances on their symptoms.

It was shown that marijuana has a positive influence on the symptomatology and effects an improvement. The Gilles de la Tourette syndrome, briefly: Tourette syndrome, is a common and complex neuropsychiatric spectrum disorder, that is characterised by sudden spasms especially in the face, the neck and the shoulders (oral contortions of the mouth; jerky turns of the head), so called "tics." This illness often breaks out during childhood or adolescence.

In the summary the report says: "Using a structered interview, we questioned a larger group of patients with Tourette syndrome (n=47) about the use of nicotine, alcohol, and marijuana and their subjective experiences. Of 28 [tobacco] smoking patients only 2 (7%) reported a tic reduction when smoking. Of 35 patients drinking alcohol 24 (69%) noted an improvement.

Thirteen patients reported the use of marijuana, of whom 11 (85%) noted a marked improvement. "Our results provided strong evidence that alcohol and, even more than that, marijuana cause much more improvement in TS than nicotine smoking."

In its final sentence the study says that "With respect to the considerable side effects of those therapy forms presently in use that apply neuroleptics, and considering the limited alternatives, cannabinoids could be used for therapy in the future, when further clinical research by way of controlled studies will have been conducted."

Source: Mueller-Vahl KR, Kolbe H, Dengler R.: Gilles de la

Tourette-Syndrom. Einfluß von Nikotin, Alkohol und Marijuana auf die klinische Symptomatik. Nervenarzt 68:985-989, 1997. (published in German)

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