When I was 30 years old, I was diagnosed as having Tourette syndrome (TS).
It was a huge relief to me to finally have a name for what had been tormenting me since I was about 13 years old. I was also depressed to know that I would be dealing with this neurological disorder for the rest of my life.
My early symptoms were eye blinks, muscle twitches, and mild vocalizations. In 1958, not many people were aware of Tourette, so I had made multiple trips to the family physician and came home with cough syrups and reassurances that it was just a phase. I remember being embarrassed when my classmates would mock my blinking or ask me if I had hiccups. As I look back, I’m very grateful to my friends who tolerated my tics and rarely made fun of me. I experienced a minimum of real meanness. I have no doubt my fellow Tourette victims have suffered much worse humiliation and harassment than I have.
In this post I will share how what seemed to be impossible became possible for me through a very unique intervention. When I specifically targeted symptom reduction and stayed in touch with a skilled guide, I experienced what was not “supposed” to happen. I will get to that later.
As most people know by now, there are many symptoms of Tourette varying in severity from minor facial tics to involuntary outbursts of profanity or inappropriate comments. Tics can be sudden, intermittent movements or sounds that range from mild to severe. Fortunately, I have a mild version, but it has had a profound influence on my life for better and for worse. More on that later as well, but first let me explain the symptoms, causes, and traditional treatments for TS.
Simple tics are typically brief and repetitive and involve a limited number of muscle groups. Complex tics consist of a coordinated pattern of movements involving several muscle groups. The spectrum of tics that people experience is very diverse.
Simple tics include eye blinking, head jerking, shoulder shrugging, nose twitching, grunting, coughing, throat clearing, and sniffing. Complex tics include compulsive touching or smelling objects, repeating observed movements, obscene gesturing, bending or twisting, swearing profusely and profanely, repeating others’ words or phrases, and barking. Fortunately, my tics were of the simple variety, but they didn’t make life any simpler for me.
Tics tend to worsen when I am stressed, tired or excited and they have changed over time. Typically, before the onset of a tic, I experience an uncomfortable bodily sensation such as tension that is relieved by the expression of the tic. Because I have a mild form of Tourette, I am usually able to hold back a tic temporarily. Restraining or repressing a tic in a particular situation, like in the movie theatre, however, results in an outburst of tics in a “safer” environment.
TS is a complex disorder probably caused by a combination of genetic and environmental factors. Chemicals in the brain that transmit nerve impulses (neurotransmitters), including dopamine, seem to play a role. Males are about four times more likely than females to develop it. I usually explain my disorder as a neurological malfunction caused by excess dopamine.
There are many conditions commonly associated with Tourette: ADHD, OCD, Autism Spectrum Disorder, learning disabilities, sleep disorders, depression, anxiety, and anger management. My friends have surely observed the first two (ADHD and OCD), and I like to use Tourette as an excuse when I get angry and cuss.
Fortunately, excess dopamine has some advantages as well. Technically, dopamine sets the “threshold” for initiating actions, i.e. the higher the level of dopamine activity, the lower the impetus required to evoke a given behavior. Thus, high levels of dopamine lead to high levels of motor activity. Anyone who knows me would attest to the fact that I’m constantly on the move. I’m not called “Rapid Rick” without reason. Unfortunately, high dopamine levels are also associated with impulsivity. My wife could bury you with stories of my impulsivity and, at times, she would like to bury me as well. Just joking — she has been amazingly tolerant.
In preparation for this post, I did a search for recent research to see if there had been any breakthroughs in treatment. I found an article in the Journal of Advanced Neurological Disorders, V4, 2011, entitled “Treatment Strategies for Tics in Tourette syndrome.” The article provided a comprehensive review of the latest and greatest treatments. The authors (Eddy, Rickards, and Cavanna) reviewed pharmacological treatments such as neuroleptics and anti-psychotics; invasive techniques such as toxin injections, deep brain stimulation, and electroconvulsive therapy (ECT); and behavioral approaches such as response prevention/suppression, habit reversal training, and cognitive therapy. None of these treatment strategies were completely successful in “curing” Tourette over the long term.
I was pleased to see that the researchers included the use of marijuana in their pharmacological treatments, and I felt extremely grateful to have avoided injections and ECT. I was particularly struck by the short list of behavioral treatments compared to the expansive list of drugs (Haldol, Clonidine, etc.).
It made me realize that it is highly probable that the medical community has overlooked some of the most powerful ways to deal with this disorder.
Now that I have set the stage, let me share my experience trying to tame Tourette over the past 60 years with non-pharmacological and non-invasive strategies. I should mention that, when I was first diagnosed in 1978, the neurologist prescribed Haldol. At the time, I was working as a consultant to large organizations and I was falling asleep at the table — not exactly a career enhancing behavior. I quickly went off medication and sought other ways to manage the symptoms. I have never returned to drug treatments although I wish I had known about the cannabis option a little earlier.
For most of my life I have been a compulsive exerciser — perhaps another benefit of having TS. Keeping in shape not only helps me burn off the dopamine-induced energy I have, but it also gives me the endurance required to make the continuous effort to suppress tics. In addition to exercise, I have tried a variety of emotional and spiritual approaches as well.
After I returned from Vietnam, I enrolled in a Doctoral program in Psychology as much to deal with my own issues as to advance my career. Over the years, I taught Yoga, practiced QiGong, meditated regularly, and studied esoteric approaches to mindfulness and well-being. In many ways, Tourette syndrome motivated me to engage in advanced studies for calming my body and my mind. All of these efforts helped me to live a healthy and productive life. As a result of my efforts and lots of good luck, I was able to have a very successful career (50 years and counting), a wonderful marriage (46 years and counting), and a fulfilling life (71 years and counting). Unlike others with more severe symptoms and fewer resources, Tourette was never a deciding negative factor in my relationships or my profession.
But here’s the deal. In the last five years I have noticed a significant increase in my calmness, control, and creativity. Not only have I experienced these changes, but the most important people in my life have observed the changes as well. Let me explain.
Five years ago, I re-connected with a Vietnam Vet friend who had been on a similar search for peace since we returned from the war. He was a Harvard grad who got his Ph.D. in Clinical Psychology on the GI bill. Although we were room-mates in Washington DC during our last year of service in the Army, we lost touch when we returned to our civilian lives. Artie had become an advanced Yogi, a Feldenkrais instructor, a spiritual guru, and an award-winning author (Healing from the War: Trauma and Transformation after Vietnam). It’s fair to say that he had become an advanced practitioner of the healing arts. After 50 years of study, he discovered a series of simple moves that generated not only a peaceful calm, but also an enormous well of energy that he describes as Energy’s Way.
Since I am always a receptive learner and someone who eagerly applies what I learn in my life (possibly another benefit of Tourette), I learned the moves of Energy’s Way and incorporated them into my already rigorous and robust practice. As a result, I found a significant decline in symptoms and a surprising incline of energy and well-being. In essence, I power-charged my practice and I now feel more at peace than I have ever felt with fewer TS symptoms.
Let me be clear. I’m not writing this as a commercial for my Vietnam buddy, Artie Egendorf. I’m sharing my struggle with a daunting disorder in hopes that fellow Tourette sufferers and medical professionals will open up to alternative forms of treatment. Energy’s Way gave me a powerful boost to a rather advanced repertoire of methods I already had in my tool kit. You can learn more about his work on his YouTube channel or his website.
One of my favorite lines in the Broadway play, Next to Normal, is when the ghost of a dead son says, “Until you name me, you can’t tame me.” If someone had been able to “name” my Tourette syndrome earlier, I would at least have received a ticket out of the Vietnam War. The Army isn’t looking for people who bark in the bushes. It sort of blows the cover. Seriously, however, I always considered my life as next to normal. Now, I see it as beyond normal.
Don’t get me wrong. Tourette syndrome and Vietnam were two of the worst/best misfortunes in my life.
TS caused me to explore calming strategies and made me much more sympathetic to people with disabilities. Vietnam inspired me to create more caring and peaceful communities. Without TS and Vietnam, I probably would have become a corporate asshole. Having said that, I don’t recommend either as developmental opportunities. Energy’s Way, on the other hand, has helped me go beyond what I thought was possible and achieve a level of peace I could not have imagined.
Until recently, I have always tried to keep my Tourette syndrome a secret by explaining away the tics as hiccups or allergies. As I have become more honest about “naming it,” I have found the honesty has eased my burden and invited connections that were previously blocked by my guardedness. Being more open has opened up more transparent communications and invited more caring support.
Writing this post has not been easy for me. TS is still an annoying disorder to manage, and I am still not comfortable exposing my vulnerabilities. I’m hoping, however, that this post may open new pathways for people with Tourette and may encourage the medical profession to explore alternative strategies for treatment beyond drugs and invasive procedures. If you know someone with TS (approximately 1% of the population has some form of it), please share the post! There are links below this post and to the left so you can easily Share, Like, or E-mail the post to your friends, family, or anyone you think might enjoy or benefit from joining in this conversation.
Originally published at Perspectives & Possibilities.