Book summary “Ticked”: summary

Introduction

You may struggle with a profound neurological condition that disrupts every waking moment. When you face involuntary movements, painful spasms, and relentless vocalizations, standard medical treatments often fail to offer real relief.

In Ticked, James A. Fussell tells the gripping story of two men battling severe Tourette Syndrome and obsessive-compulsive disorder. You discover how they navigate years of physical agony, social isolation, and failing pharmaceutical options before finding a radical neurosurgical intervention.

The book traces the harrowing path from debilitating symptoms to experimental deep brain stimulation. You learn how pioneering surgery can quiet the brain and restore normal life.

• What causes the extreme physical and psychological toll of Tourette Syndrome?
• How do conventional drugs and coping mechanisms fall short?
• Can deep brain stimulation safely eliminate severe tics?

1. Understanding Tourette Syndrome

Tourette Syndrome manifests as an unpredictable variety of involuntary physical tics, vocalizations, and bizarre behavioral compulsions.

You face a disorder caused by chemical imbalances or chromosomal abnormalities in the brain. The condition creates an escalating internal tension that culminates in sudden, irresistible urges to move or make sounds. Symptoms range from mild eye blinking and throat clearing to severe muscle contractions, coprolalia, and extreme physical outbursts.

At the 1990 National Conference of the Tourette Syndrome Association in McLean, Virginia, Jim Fussell encountered individuals with diverse symptoms. You might meet a woman named Jennifer who compulsively unbuttoned strangers' shirts or a man who screamed bloodcurdling yells mid-sentence.

Early estimates placed full-blown Tourette's cases at 100,000 in the United States. Modern NIH data suggests a 1 percent prevalence of all forms of Tourette's in the U.S. population, totaling about 3 million people. Jim Fussell received his diagnosis of Tourette's in 1984.

Symptom Variety

Tourette Syndrome typically begins in early childhood, causing intense physical pain, psychological distress, and prolonged secrecy for those affected. You experience non-stop internal anxiety and physical trauma from your own muscle contractions if you live with severe tics. Medical professionals often misdiagnose these signs, while family members mistakenly view the symptoms merely as bad habits.

In the fourth grade at St. Bonaventure Parish School, nine-year-old Jeff Matovic suffered an intense muscle contraction. His right hand clenched his left hand so tightly it cut off circulation, leaving five blood-red fingernail indentations that required him to run cold water to force his hand open.

Infant Jeff had worn heavy steel leg braces for hip and knee curvature for 23 hours a day. He was born in 1973 and experienced his first recorded tic in 1977 in Spring, Texas.

Early Onset

Tourette Syndrome symptoms often manifest in childhood as sudden, uncontrollable tics and motor spasms that you go to great lengths to hide out of embarrassment. Jeff experienced his first noticeable tics around age ten, marked by involuntary arm movements, grunts, and deep knee bends. He desperately tried to conceal these episodes from his family and friends.

While playing football in his backyard with a pink rubber ball called the Pinkie, Jeff suffered a severe spasmodic twitching fit in front of his brother Steve. The year 1983 marked the time Jeff discovered what was wrong with him at age ten.

You navigate a lifelong pursuit of hope when facing a chronic neurological disorder. Both authors emphasize that while medical treatments and personal circumstances can feel insurmountable, the search for solutions and the support of loyal friends and family provide the emotional fuel needed to survive. Jeff Matovic confided in his childhood best friends, Kevin Keenan and Dan Kenaan, about his strange movements, and they responded with unwavering acceptance rather than rejection. Jim Fussell lived with Tourette's for approximately 30 years before finding a parallel story in Jeff Matovic, mirroring Jeff's own 30-year duration of suffering prior to his 2004 surgery.

• Celebrate life's small victories.
• Fight for what you want and take it.
• Create a visible blueprint to guide you to your goals.
• Maximize your potential.
• Embrace change.
• Don't limit yourself.
• Never allow someone else to define the parameters of your life.

2. Medical Frustrations and Side Effects

Early medical consultations yield discouraging prognoses, while standard pharmaceutical drugs produce intolerable side effects.

Neurologists often rely on trial and error for medications and warn that tics may worsen. They frequently predict that you will face severe limitations on your academic and professional future.

A middle-aged neurologist in downtown Pittsburgh told young Jeff and his mother to lower their expectations. He stated that Jeff might not graduate high school or go to college, earning himself the label Dr. Dream Crusher.

Medication Dangers

Strong antipsychotic drugs can displace nervous energy from the head into the chest and stomach. This creates an intense internal restlessness known as akathesia that can lead to suicidal ideation.

After taking Haldol, Jim experienced severe akathesia and ran outside in the snow at 12 degrees in his socks, later throwing the pills away. Three weeks had passed with no reaction before his doctor increased the Haldol dosage.

Decades of trying various maladapted pharmaceutical drugs leave you exhausted and hopeless when conventional pills stop working. Jeff reflects on taking a pharmacy full of medications over nearly twenty years of ingesting medications, including tranquilizers, old blood pressure medications, and antipsychotic drugs that were never designed for Tourette's.

Jeff recalls taking blue, white, and red pills, capsules, caplets, soft-gels, and time-release tabs that merely offered warmed-over platitudes wrapped in prescription labels instead of real hope. You swallow and hope day after day, but the pills eventually fail to control your worsening tics, leading you to throw down the dope.

3. Coping Mechanisms and Physical Toll

Severe Tourette's imposes an immense physical and psychological toll, driving sufferers to seek relief through custom devices and sports.

Physical Toll

Tourette Syndrome causes intense physical pain, neurological pressure, and severe sleep deprivation. Over the better part of fifty years, you experience violent tics that slam your brain against your skull and cause severe neck contractions. Public responses compound the exhaustion through laughing, pointing, and mocking comments.

The author shook his head so hard at a University of Kansas football game that his reading glasses flew off into a drunk woman's beer.

You struggle through middle-age breakdown while sleeping frequently for only three hours in the winter of 2004. You buy four king-sized mattresses before giving up and sleeping on the living room floor.

Alternative Relief

Tourette Syndrome exhibits a chameleon-like adaptability where physical relief mechanisms temporarily reduce pain before the tics adapt and the pain returns. Treatments like whirlpools, mattresses, and massage devices provide initial relief, but the nervous system adapts, shortening the duration of pain reduction over time.

Jim purchased a used Aquamassage machine for his basement, which initially provided hours of relief before his Tourette's adapted and shortened the effect. The retail cost of a new Aquamassage machine was 30000 dollars, while the price Jim paid for a used machine online was 6500 dollars.

Custom medical or pressure devices can help manage the intense physical pressure and pain associated with chronic tic disorders. Applying regulated pressure to the head can temporarily alleviate the neurological pressure and pain caused by severe neck vertebrae damage from decades of tics.

James Winder at Sealtech in Athens, Tennessee, custom-made an inflatable headband for Jim for two hundred dollars that helped temporarily relieve his head pressure. Companies that refused to customize an inflation device quoted 4000 dollars.

Physical sports serve as an effective therapeutic outlet for Tourette's syndrome because intense concentration and continuous movement help focus muscles and satisfy the constant urge to move. Tourette's is not an inability to move, but a constant desire to move. Rigorous athletics like cross-country running and track allow individuals to channel their adrenaline, expend built-up frustration, and temporarily suppress or master their tics by focusing intensely on physical execution.

Jeff dominated cross-country and track at Bay Village High School, eventually running a 4:24 mile, capturing all-city honors, and winning a district championship anchor leg in 49.8 seconds.

4. Despair and Psychological Crisis

The cumulative burden of chronic pain, social isolation, and unmanaged OCD can lead to profound depression and suicide attempts.

Hiding a neurological condition like Tourette's syndrome out of shame or fear of social stigma can severely amplify emotional distress and isolation. You might view the initials TS as scarlet letters, avoiding medical forms and teachers. Jeff checked none on high school sports medical forms and constantly invented excuses to tie his shoes so he could curl into a protective turtle shell during severe tics.

Obsessive-compulsive disorder frequently accompanies Tourette's syndrome, creating severe academic hurdles through rigid requirements for symmetry, organization, and repetitive reading. Jeff had to stack his schoolbooks perfectly on the upper-left corner of his desk by size and was forced to reread sentences three or four times, sometimes turning a short assignment into a three-hour nightmare.

Severe lifelong Tourette Syndrome creates profound isolation and chronic pain, sometimes leading sufferers to contemplate the end of their suffering. In the summer of 2003, Jim stood on the roof of his mother's retirement complex in Lincoln, Nebraska, contemplating the relief that ending his life would bring to his Tourette's.

Isolation and Despair

Sanctuary spaces provide vital psychological refuge for individuals suffering from chronic pain and neurological disorders. Jeff spent fifteen minutes every day in his favorite cushioned chair in the second row of St. Francis Chapel, praying aloud and signing a prayer book with Your disciple—J.

Crisis and Hospitalization

The cumulative psychological burden of chronic illness, bereavement, and social alienation can culminate in impulsive suicide attempts followed by immediate regret. After laying out his burial suit in early 2001, Jeff swallowed a handful of prescription pills, called the Greater Cleveland Poison Control Center pretending to be a panicked father, and was subsequently rushed to the hospital by his mother.

You can manage such moments by using specific refuge habits:

• Find a quiet, safe haven open day and night
• Sit in a comfortable chair and relax arms until they feel rubbery
• Practice deep breathing exercises
• Perform progressive muscle relaxation
• Speak your piece in prayer and allow yourself to rest

5. Discovering Deep Brain Stimulation

Meeting key figures and discovering pioneering surgical treatments offer a vital lifeline and new hope.

The Oprah Connection

While covering Oprah Winfrey's workshop in Kansas City, you interview her and thank her for inspiring people with Tourette's. Some tickets for this Hi Gorgeous workshop cost 1,000 dollars on eBay. Touched by your heartfelt gratitude, Oprah hugs you and subsequently ships you a VCR tape of a Radical Medical Makeovers episode.

The author interviewed Oprah Winfrey in a greenroom tent in Kansas City, telling her about his struggle with Tourette's, which prompted her to ship him the tape featuring Jeff Matovic.

This original airdate of the Oprah Winfrey Show episode featuring Radical Medical Makeovers was 4/21/04. Watching the tape before and after surgery reveals that severe tics could be successfully treated. This shatters the belief that the condition was permanent and destructive of all future possibilities.

Medical Research

Watching the tape of Jeff Matovic in your darkened family room with a bowl of salted peanuts and a glass of skim milk reveals that the condition could be beaten. Jeff Matovic's successful deep brain stimulation treatment proved that Tourette's syndrome is not permanently invincible. In November 2004, you board a plane from Kansas City to Cleveland to meet Jeff Matovic. Your first meeting with Jeff Matovic lasts two hours in a motel room.

Patients with treatment-resistant movement disorders often resort to extensive independent medical research to find novel surgical interventions. An August 2001 20/20 episode on Ed Cwalinski aired just as Jeff began his search. From 2001 through January 2003, the surgery became Jeff's greatest obsession.

Jeff filled an entire box with over fifty manila folders, duct-taped at the seams, containing research on DBS, doctors, and his condition while sitting at his Compaq PC.

When traditional medical referrals fail due to institutional inertia or medical stereotyping, patients must take direct action to access advanced specialists. After three decades of playing by the rules, Jeff encounters gatekeepers when his new adult neurologist refuses to provide a referral to a neurosurgeon. The doctor cites Jeff's past suicide attempt as a permanent psychiatric barrier.

Jeff marches past a secretary into an empty office at the Cleveland Clinic, leaves an urgent note on a desk, and then independently calls University Hospitals to schedule an appointment with Dr. Robert Maciunas. Frustrated by medical stereotyping, Jeff bypasses the Cleveland Clinic entirely and secures an appointment with a neurosurgeon within weeks.

6. Surgical Preparation and Insurance

Undergoing experimental neurosurgery requires rigorous psychological testing, administrative navigation, and strategic life changes.

Advanced neurosurgical procedures require rigorous multidisciplinary evaluations to assess cognitive function, motor skills, and hemispheric brain usage. Experimental treatments not explicitly approved for specific conditions require strategic administrative navigation and rapid life changes to secure insurance coverage.

Pre-Surgical Testing

Dr. Paula O’Grocki puts you through a six-hour battery of complex psychological, gross motor, and intelligence tests in September 2003. This evaluation determines brain usage percentages and ensures the deep brain stimulation procedure will not pose excessive risks.

Jeff completes short- and long-term memory tests, dexterity tests, reading retention tests, and abstract logic puzzles administered by neuropsychologist Dr. Paula O’Grocki at a University Hospitals satellite branch.

Insurance Hurdles

Because deep brain stimulation was not FDA-approved for Tourette's syndrome, insurance companies routinely denied coverage for an operation costing a quarter million dollars. Dr. Maciunas bypasses this by submitting the paperwork under a broader movement disorder category, and Jeff marries Debra quickly to get on her insurance plan.

Jeff and Debra scrap their dream wedding at the Great Lakes Renaissance Fair for a simple ceremony at Lyndhurst City Hall taking just three weeks from license to marriage so Jeff could be added to Debra's insurance plan before seeking preapproval.

Before deep brain stimulation surgery, patients must endure uncomfortable preparatory procedures, including cold pre-op rooms and having a titanium halo bolted to their skulls with deep screws. Operating and pre-op rooms are kept cold to suppress bacterial growth. Doctors attach a titanium halo using screws into the patient's temples and near the cheeks to completely immobilize the head during the operation.

Jeff endured a freezing pre-op room and had a titanium halo fitted, which Dr. Maciunas joked would cost $86,000 if he wanted to keep it.

7. The Miracle of Brain Stimulation

Deep brain stimulation can achieve complete tic cessation and restore normal motor control through targeted electrical pulses.

On February 9, 2004, thirty-one-year-old Jeff Matovic underwent an eight-hour deep brain stimulation surgery at University Hospitals in Cleveland, Ohio. Dr. Robert Maciunas drilled nickel-sized holes four inches apart into Jeff's skull to implant electrodes deep within the thalamus. You face a combined serious complication rate of over 20 percent with this procedure, including risks of stroke, paralysis, blindness, and less than a 1 percent chance of death.

Programming the Device

Specialists must meticulously program the implanted pulse generators using a handheld computer. They adjust the amplitude, frequency up to 185 pulses per second, and pulse length of each electrode lead one by one. Tina Whitney spent two hours adjusting Jeff's stimulators before finding the exact frequency-modulation settings that eliminated his tics.

Complete Tic Cessation

On March 4, 2004, Jeff became the first person with Tourette Syndrome to have deep brain stimulation completely eliminate all of his physical and mental tics on both sides of his body. Thirty years of severe suffering ended thirty seconds after the correct electrical pulses were applied. You can see the physical reality of this medical miracle in the two subtle rectangular bulges under the skin on Jeff's pecs that house the batteries powering his stimulators.

Patients with implanted pulse generators must navigate everyday environments with care:

• Carry medical identification cards explaining the implanted device for airport and security scans
• Use the provided remote control device to reactivate the batteries if a security system accidentally turns them off

At the Oprah show, security guards wanted to pass a metal wand over Jeff, but he and Debra warned them it would deactivate his brain batteries and cause his severe tics to return instantly. A deactivated battery takes 20 seconds to turn back on and restart.

Conclusion

Severe neurological conditions demand relentless advocacy, careful navigation of experimental treatments, and the courage to pursue unconventional solutions when standard medicine fails.

You can apply these principles to your own medical battles by following a structured path to recovery and resilience.

1. Educate yourself thoroughly about your specific condition and question every standard prognosis.
2. Build a support system of specialists, family members, and peers who understand your daily physical and psychological toll.
3. Document your symptoms, triggers, and treatment side effects meticulously to present clear evidence to medical professionals.
4. Explore experimental therapies, clinical trials, and emerging technologies when conventional pharmaceutical options fail.
5. Prepare for bureaucratic and financial hurdles by persistently engaging with insurance providers and administrative systems.
6. Maintain psychological resilience through professional counseling, coping mechanisms, and personal determination during recovery.

10 Key Ideas

1. Tourette Syndrome manifests as an unpredictable variety of involuntary physical tics, vocalizations, and bizarre behavioral compulsions that begin in early childhood.
2. Early medical consultations yield discouraging prognoses, while standard pharmaceutical drugs like Haldol produce intolerable side effects and severe internal restlessness.
3. Severe Tourette's imposes an immense physical and psychological toll, driving sufferers to seek relief through custom devices and alternative coping mechanisms.
4. Physical sports serve as an effective therapeutic outlet for Tourette's because intense concentration and continuous movement help satisfy the constant urge to move.
5. Meeting key figures like Oprah Winfrey and watching television reports on radical medical makeovers offer a vital lifeline and new hope for effective treatment.
6. Undergoing experimental neurosurgery requires rigorous psychological testing, administrative navigation, and strategic life changes to secure insurance coverage.
7. Deep brain stimulation achieves complete tic cessation and restores normal motor control through targeted electrical pulses delivered by implanted electrodes.
8. Patients with implanted pulse generators must navigate everyday environments carefully, including carrying medical ID cards and using remote controls if security scanners deactivate their batteries.
9. Support from loyal friends and family, alongside swift commitments like marriage to secure insurance, provides the emotional and administrative fuel needed to survive.
10. Maintaining psychological resilience through sanctuary spaces, prayer, and personal determination helps individuals endure chronic pain and crisis.