CORVALLIS — There is no respite from the convulsions that make Tyler Boshae a prisoner in his own body.

No warning when the body-wracking tremors will erupt and launch him into a seizure of spasms.

There’s a polite medical name for what happens. They’re called “tics.”

But in reality, what happens is a brutal, raw expression of a body raging, painfully, against itself.

There is no mind over matter, no willpower strong enough to hold back the neurological chaos that causes Boshae to slam his body to the floor and contort his limbs in ways they are not intended to bend or move.

When the tics are particularly acute, he’s forced to wear a helmet or live temporarily strapped in a wheelchair. He once bashed his head so violently against a car window that he cracked the glass.

Each episode, sometimes just minutes after the last one, brings the uncontrollable thrashing, which brings on more pain.

“It’s like being in a fistfight with yourself every day,” said Boshae, a 23-year-old Corvallis man who has severe Tourette Syndrome.

“It takes so much toll on my joints, on my muscles,” he said. “Some days, I spend my days crying because my body hurts so much. I curl up in a ball, waiting and waiting for it to stop or the tics to calm down.”

Mystery disorder

No one knows what causes the neurological disorder, which strikes about one in 1,000 people. Although Tourette is often associated with spontaneous swearing, its main symptom is repetitive, involuntary movements ranging from twitches to violent, disabling motion. Physicians rarely see the kind that has afflicted Boshae since he was 9.

Often, the severity of tics decreases over time as children mature. But in Boshae’s case, they have become worse.

What started out as quirky shoulder shrugs and repeated guttural sounds rapidly bloomed into much more dramatic involuntary movements,

Different tics different ways to release the neurological misfirings came and went, but they never went away, said Boshae’s mother, Jonni.

Most of Boshae’s high school years were spent lying face-down on a padded mat in his classrooms, learning by listening. Reading was a near-impossible task because the herky-jerky spasms would cause him to throw the book or tear out pages.

Becoming educated about the rare syndrome and navigating those earlier years was particularly stressful, Jonni said.

“He was a bright, happy, normal boy and it just came out of nowhere,” she said. “We had no idea what it was, and as a mom you are trying to find relief.

“We did whatever had to be done to help him live a normal life.”

Search for treatment

For the past 14 years, Jonni and her husband, Steve, have crisscrossed the U.S. and Canada seeking the best medical talent to help their son. With each hopeful visit, a new protocol was given; each time, it failed.

As the years passed, the awful reality set in: Modern medicine has yet to find a cure for the crippling physical condition and the excruciating pain that comes with it.

But living with Tourette Syndrome means living with ever-increasing dosages of heavy narcotics that have now reached a level Boshae’s physicians said they are uncomfortable prescribing. Furthermore the drugs aren’t really working and come with a host of worrisome side effects.

Faced with this impasse, his medical team has given Boshae its blessing to be a candidate for an experimental surgery called Deep Brain Stimulation.

The procedure, which has been successful for patients with Parkinson’s Disease, involves implanting electrodes into a deep part of the brain and connecting them to pacemaker-like devices implanted below the collarbone. Once the system is in place, electrical charges block abnormal neurotransmissions.

If the equipment is set in the exact, necessary spot and is not jarred by post-surgical swelling — extreme concerns — Boshae said he might have a tic-free life, or a life with reduced symptoms.

Only a few Tourette patients have had the procedure, which is not FDA-approved as a treatment for the syndrome but is allowable under “humanitarian device exemption,” explained Boshae’s Missoula physician, Steve Kemple.

The surgery is a delicate dance, and there are grave consequences if things go wrong, said Kemple, president of Advanced Pain Centers of Montana and director of surgery at Community Medical Center.

He’s no expert on the procedure, which, if all goes according to plan, will take place in September in a California hospital. But he does know one thing for certain: He’s run out of options for his patient.

“It is a challenge how to manage Tyler’s pain,” Kemple said. “I’ve never seen anything like this.”

Just two weeks ago, Kemple explained, Boshae’s tics were so extreme, he hospitalized the young man for five days so he could get some rest.

“The tics were so severe he did not sleep. He was malnourished, dehydrated, completely exhausted, and black and blue all over,” Kemple said. “I knocked him out so he could sleep and recharge his batteries.”

At this point, Kemple is keenly aware he can only give Boshae temporary fixes.

“I just wish we had a magic drug out there,” he said. “But we don’t.”

As a healer, that truth is frustrating and heartbreaking.

“Tyler is a wonderful, charming, funny guy. He’s one of the nicest guys you’ll ever meet,” Kemple said. “He deserves a good life.”

Results vary

Those who have gone through Deep Brain Stimulation have had mild to remarkably successful results.

Some of those results have been shared on national television, including the story of man named Jeff Matovic, who like Boshae was held hostage by his body’s spasms. He underwent the surgery in 2004 with magnificent, life-changing effects.

Matovic’s experience is what Boshae is praying for.

At age 23 and engaged to be married, Boshae said he is impatient for the day he can have a normal life.

He longs for the day he can go to college and get a degree in marketing. He can’t wait to hold a steady job or drive a car or have children.

Boshae has strong faith in God and strong faith that the surgery will be successful. And when it’s over, the first order of business, he said with some good-humored direction from his fiancee, Kassie Friesen, will be to get married.

“I’m very excited about it. I’m personally not nervous,” Boshae said. “The only reservation I have is if something happens that would take a toll on the people who love me.

“I wish (the surgery) would come sooner. Days go by so slowly and weeks seem like months because of the pain. It really is one of the hardest things for someone to do, to live like this. It’s not like the flu, where in two weeks I’ll be better.”

Friesen said the surgery terrifies her.

“I’m scared to death, to be honest,” she said. “Brain surgery is something you watch on a television. It’s not something your loved one goes through.

“He may not come out of it, and that is terrifying.”

Club Twitch

Boshae is not alone in his dream for a better life. Along with his family, his friends also pin their hopes on the surgery, and so, too, are a legion of his fans.

Across western Montana, acquaintances who have admired Boshae’s unswerving dignity and good humor throughout this long battle have gathered their forces to raise the necessary $200,000 to make the surgery happen.

In the spirit of Boshae’s legendary sense of humor, which won him three state speech and debate championships in the category of “humorous solo,” the groundswell of support has created a foundation in his honor called “Club Twitch.”

Diane Dixon said she was moved to spearhead the effort after getting to know Boshae last year, when she and her husband, Tad, hired him at their Missoula business, Montana Stone Gallery.

In just a few weeks, Boshae’s stellar work ethic and fun personality earned the unabashed admiration of Dixon and all the gallery employees. How he struggled with and persevered through his tics became their source of inspiration.

“His attitude was always exceptional and he was always willing to do what was asked,” Dixon said. “He did not want his limitations to set him apart from the team.”

After watching him hurt himself up one too many times, Dixon knew she had to do something to help Boshae, not knowing he and his family were weighing the possibility of the costly, experimental surgery.

She saw firsthand how the disease took a toll on Boshae, who one day had a tic so severe, he fell in the path of a forklift.

The Boshae family are longtime Bitterroot Valley residents and are far more used to giving than receiving charitable work, so they were surprised and relieved when Dixon stepped forward and asked if she could lend a hand and get a fundraising effort off the ground.

Honored by the request, the Boshaes said they could use the help to make the costly surgery possible.

In the last few weeks, Club Twitch has gained traction, and the first of its fundraising events will happen this week.

“He needs our help,” said Jim Kuffel, who is part of an 11-person crew that will be swimming 25 miles of Flathead Lake, from Bigfork to Polson, to raise funds for Boshae on Saturday, Aug. 9.

Kuffel, who is a member of Club Twitch, suggested that his swimming group, the YMCA Noon Masters, take their annual swim in Boshae’s name.

“I really believe God puts certain people in our lives and you have an opportunity to respond,” Kuffel said. “That’s what we are all doing. Here is somebody special that has physical limitations and we are using our athletic gifts to support them and help them.”

The focused effort, the commitment, and drive of this group of friends and strangers is stunning, said Boshae’s father, Steve.

“Jonni and I have served on all kinds of committees and have been involved with all kinds of community things, so it’s not unusual to be at a meeting trying to figure out how to help,” Steve said. “But during a Club Twitch meeting, I’ll forget the whole meeting is about us.

“It hits me that all these people that have come together are here for us for Tyler. It’s humbling.”

Leap of faith

Deep Brain Stimulation surgery is no small matter, Tyler said, and he’s grateful for the people who are rallying around him.

He’s not afraid of what could go wrong.

“I don’t fear death,” he said. “I don’t fear anything at all about the surgery. I fear the pain my loved ones are going through.”

Like his son, Steve said the positives the surgery could lead to far outweigh the negatives.

“Heart attacks, strokes, death anything can happen,” he said. “But the alternative is watching your son beat himself to death.”

“We all know the risks,” Jonni said. “But here we stand. There’s no place to go but jump off this cliff. We may fly or we may not, but there are no other options.”

“He can’t keep taking narcotics,” she said. “And aside from (being) willing to take the risk, we feel God has provided us and led us to this point.

“Why he had to suffer to this point, nobody knows, but we always believed there is a purpose. And all these people coming from everywhere in our lives to help Ty, we feel this is divinely orchestrated for this time.”

Follow this link to watch a video report on Tyler Bochae's battle with Tourette Syndrome through the years.