​BOBS DO THE STRANGEST THINGS
by Bob Reinke
A personal experience with Tourettes Syndrome

"Bobs do the strangest things" was stated to me by a fellow classmate in my freshman year of high school.  He was looking at a book called, "Animals Do The Strangest Things" and stated his twist of the title.  I knew he was joking.  He was, and still is, a good friend of mine, and I knew he was referring to the twitching I often did that was very hard for me to control.  I had no idea at the time why my body did it, or how to completely control it.  My parents chose to ignore it.  I think they felt it might get worse if they directed any attention to it, and besides, they didn't know what it was.  Until this time I didn't think anyone even noticed the symptoms.  Apparently it was more noticeable to others than I had realized.  An older sister also had some issues at about the same age in her life, and my parents had that to deal with, so my issues, being less severe may have contributed to their decision to ignore my tourettes.  My sister was labeled schizophrenic and is possibly autistic.  She was the National Spelling Champ in 1967.  In the book “A Mind Of It’s Own” it is stated that the drug Haldol is a treatment for both abnormalities.  It blocks the transmission of dopamine across the synapse in the brain.  I think that autism, schizophrenia, and tourettes are related to one another, and possibly the three corners of a triangle with sufferers in all areas of the triangle.

There were many other comments made to me through the years.  One good friend of mine, that I often gave a hard time to, called me twitch for a period of time.  It wasn't until I was on a family vacation at age 34 that I knew what disease I had.  I was sitting in a motel room, in Colorado, relaxing and doing the guy think, channel surfing with the TV remote, when I came across a show about a famous baseball player.  It was the "Jim Eisenreich's Story".  The events that took place on a baseball field brought Jim and Tourettes Syndrome to a national level.  It lead to a short movie about Tourettes that became a blessing for me.  Now, like it or not, I knew what I had.  That,  in itself, was a lot of relief.

I learned that the syndrome was discovered in 1885 by French neurologist Georges Gilles de la Tourette, and hence the name.
Tourettes Syndrome is defined in the "Diagnostic and Statistical Manual of Mental Disorders-III-R" published in 1987 as:
1. Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.
2. The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than one year.
3. The anatomic location, number, frequency, complexity, and severity of tics change over time.
4. Onset before the age of 21.

I noticed symptoms at about age 13.  For me, Tourettes Syndrome is a condition that interferes with the normal control of muscles in my body which imposes such extraordinarily high levels of stress, and to such an extent, that it forces me to find unordinary outlets to deal with the stress.  These outlets for stress often include an increased frequency of tics which ironically are a part of the initial stress and lead to more stress.

The tics can often be controlled to the extent of one's ability to control the desire for a drink of water (in mild cases), to the ability to control a yawn (in moderate cases), and to the ability to control a sneeze (in severe cases).  There are cases that go beyond what I call the severe case in which I don't believe the sufferer can control his actions at all during some episodes of it.  I live, by this definition, in the moderate to severe level.

In cases of equal severity, the outlets for stress will vary with character, up-bringing, morals and values.  In the best of moderate tourettes sufferers there is a tendency for a small percentage of them to resort to Coprolalia (swearing).  My theory is that they consciously or subconsciously choose this option as the least harmful to others, since they have no desire to hurt others in any way, and it psychologically relieves some stress.  However, severe sufferers are often forced to physical, destructive actions to relieve their stresses.

The act to even things up.  A desire to move the same muscles on one side of the body as the other or to act out the same sequence of movements on both sides, is often associated with tourettes.  There is also a desire to experience the same sensory impute on both sides of the body.  If one hand touches a sharp edge, the sufferer wants the other hand to touch a sharp edge of equal sensation immediately.  This is very true in my case.  It is often labeled an OCB, obsessive compulsive behavior.  I have found that sometimes this is very amusing and entertaining to others around me, but it can be very dangerous also.  If I bump a finger or hand lightly against a grinding wheel while working, I have often times touched the wheel lightly (while it is turning) with the other hand.

Commonly there are vocal tics including throat clearing, grunting or saying parts of words.  The frequency of the tics can be anywhere from several times per minute to once a day.  For some people with Tourettes Syndrome the symptoms are so mild they go unnoticed or they have learned to control it to strong degree.  Both are somewhat true in my case.  Often, in mild to moderate cases, the urge to let out the tics and movements can only be put off till no one is looking.

A very severe case of Tourettes Syndrome is written about by a mother in the book "What Makes Ryan Tick?"  This is a well written book about the struggles that she experienced with other family members, the local schools, neighbors and uninformed doctors.  She was persistent and shares what she learned over the years so others can deal with parenting a Tourettes sufferer easier.

In the book "A Mind of It's Own" Ruth and Bertel Bruun describe Tourettes as, "An unusual medical condition with a host of possible symptoms, some rather mundane, others extremely bizarre.  The more curious symptoms, such as the involuntary use of profanities, have caught the attention of the public and have baffled physicians who are still seeking scientific explanations."

Twist and Shout is a short movie about a man with Tourettes that delivers his information about it in a comical way and sings about it.  He has learned to accept the disease at the highest level possible.  Not shy, he openly shares his problems and symptoms with the world.

There is no cure for Tourettes Syndrome.  Some medications are available, but the combination of these for one individual can have totally opposite results for another.  It usually comes down to trial and error, in every case, till something works.  I have had electrical acupuncture on my face, in my mid 20’s, and the initial results were fantastic.  Repeated visits lead to the machine being turned up higher each time to get the same results, until eventually, at full strength, it hardly affected me.  A few years later I saw a neurologist in Omaha, be he apparently had no knowledge of Tourettes and didn’t have any explanation for me.  Fortunately I saw that TV show and found out for myself.  The symptoms usually lessen with age, however mine have remained about the same, but I’ve learned to control it better over time.