It was 1971 when Slidell resident Don LeBlanc’s world changed.

He was just 21 when his head, uncontrollably, involuntarily and painfully, began jerking back and to his right.

“I didn’t know what it was, and neither did the doctors,” he said as he ticked off each one’s name like it was yesterday. Nearly 20 doctors, including psychiatrists, were baffled as to what he had.

Don LeBlanc reflects on his trying times coping with Dystonia while gazing at a portrait of his three children. (Staff Photo by Chad Ruiz)

The responses were few and far between, with some suggesting mental retardation.

As sporadic as the diagnoses were, so too were the movements of his head.

“It was coming in and out where it would get a little worse then it would balance itself out and get a little better,” LeBlanc said.

But it was manageable, he said, so he continued with his life until 1979, when the stress and aggravation of opening his own pest control business inflamed his undiagnosed disorder.

Every day was a challenge.

“It got to the point where it was hard to drive or stand up still,” he said.

Again, doctors offered no answers, but he continued pressing on, determined to be a strong example for his three children and wife. Even with his head uncontrollably jerking so hard to one side it kept him from walking straight and often toppled him over, he still pushed on, building his business.

“I just kept moving, kept going,” he said.

But the awkwardness and embarrassment of his clumsy movements became clear one workday after treating a customer’s house.

“This lady told me her neighbor across the street wanted me to do her house, too,” he said with complete clarity. He said he was making his way across the street to the awaiting customer-to-be standing outside her home when he fell over in his usual fashion from the intense pulling of his head.

“I thought nothing of it because it happened all the time,” he said.

When he reached the woman, the first thing he noticed was her stare.

“I remember her expression. She was looking at me like (I was) a freak, and she didn’t want my services anymore,” he said.

Her reaction finally pushed LeBlanc to the brink. He drove straight to his father’s home, where he broke into sobs proclaiming he couldn’t cope with his illness anymore.

Diligently, his father phoned doctor after doctor until one recognized his symptoms.

“He said, ‘I know what you have, but there’s no cure for it, so the best I can tell you is go buy a wheelchair,’” LeBlanc said. Although his words were dismal, he could finally put a name to his illness, Dystonia.

More phone calls finally led LeBlanc to a Houston facility that, at the time, was one of the leaders in treating the disorder.

The Diagnosis

He discovered he was one of what would become more than 300,000 people in the U.S. today to have Dystonia.

Dystonia is a little-known but surprisingly common neurological movement disorder that forces muscles into abnormal, often painful, movements or postures. The third-most common movement disorder after tremor and Parkinson’s disease, Dystonia can be hereditary or result from a brain injury or exposure to certain medications.

Different types of Dystonia feature different symptoms, including cramping and twisting in the feet, limbs and torso; spasms of the neck and shoulders, forcing the head back, forward or to the side; uncontrollable blinking of the eyelids; grimacing of the face, tongue protrusion, jaw closure or jaw opening; or spasms of the vocal chords, making it difficult to speak.

Doctors determined LeBlanc had Spasmodic Torticollis, one of the rarest forms of the disorder that afflicts only about three in every 10,000 people.

“I walked in there determined not to leave until I was better,” he said.

After several unsuccessful bouts with medications and a failed attempt at electrical stimulation of the brain using an implanted stimulant device, LeBlanc resorted to the final, most dangerous procedure doctors offered.

“When they said I could die, I didn’t care because of the pain,” he said.

The procedure had doctors surgically sever several nerves in the back of his skull on either side of his brain. The procedure warranted 10 hours of surgery and a 30-day stay in the hospital.

“When I came out the hospital it was better, but my arm sprung up in the air and locked that way for about a year,” he said, demonstrating with a raised, forward-extending arm.

And then one morning, while standing before the mirror with an outstretched arm and twisted head, LeBlanc said he felt an unwrapping feeling in the muscles in his neck.

“I watched myself untwine,” he said, and he has been that way ever since with few remnants of the disorder noticeable like his inability to turn his head to the left without forcing it with his hand.

The Effect

Since that day nearly 30 years ago in 1981, LeBlanc dedicated himself to public awareness of the disorder. He started the first southern chapter of the Dystonia Medical Research Foundation, which at the time only had about 30 chapters nationwide, by finding seven others in the New Orleans metro area with the disorder. Today, thousands are now registered in his chapter, including about 2,000 members in St. Tammany.

He also reigns as the South Central Regional coordinator in DMRF that now boasts more than 130 chapters and over a million members worldwide.

LeBlanc has also had his poem, “A Message to Dystonia,” published in a London journal.

His most recent activity within the foundation had him visiting Washington D.C with the Dystonia Advocacy Coalition and lobbying senators for support with certain bills supporting the disorder.

Today, there are still a limited number of treatment methods, but one of the most effective involves injecting Botox into the spasmodic muscles to relieve spasms and pain.

The newest treatment, Deep Brain Stimulation, was recently approved by the Food and Drug Administration for treatment with severe Dystonia. It involves the careful placement of electrodes planted in the brain to deliver controlled electrical pulses to targeted areas involved in movement control.

Although LeBlanc considers himself lucky to have been free of the involuntary movements for so many years, he said he continues to “feel its ugly head behind him, trying to get in again,” which, he admitted, came close after his belongings were lost in Katrina while living in St. Bernard.

To learn more about Dystonia, visit www.dystonia-foundation.org or email LeBlanc at airdadone@charter.net.