Movement Disorders Discussed at Washington Meeting

When Norm Dubin used to drive around his Baltimore neighborhood, he held the steering wheel with one hand and pried his eyelids open with the other.

It was 1976, years before he was diagnosed with a movement disorder called blepharospasm, which causes uncontrolled blinking.

"It was exhausting," said Dubin, a 64-year-old reproductive research scientist in Baltimore. "All my energy was going into keeping my eyes open. The only relief was when I closed my eyes."

Dubin's condition is among those under discussion this week on Capitol Hill, where physicians, patients and advocates attended a patient summit to raise awareness about movement disorders like blepharospasm -- neurological conditions that affect motor function.

There are more than 20 movement disorders, including Parkinson's Disease, Essential Tremor, Huntington's Disease, Tourette's and Restless Legs Syndrome.

Though they have different symptoms and vary in severity, each condition stems from a malfunctioning message center deep within the brain, said Dr. Lisa M. Shulman, co-director of the Parkinson's Disease and Movement Disorders Center at the University of Maryland School of Medicine.

"A lot of times physicians don't know how to treat these things," she said.

Dubin first experienced symptoms in the late 1970s at age 34. At first he thought it was allergies.

His eyes became irritated while he was driving and he had to pull over and rest.

But the symptoms persisted and his eyes started closing more forcefully, often for several seconds at a time. While he never had any accidents, Dubin kept his driving to a minimum for the next several years.

Dubin saw specialists in Baltimore, Philadelphia, Washington and New York to no avail.

"Nobody could diagnose it," he said.

He tried a low-wheat diet on the advice of a nutritionist, saw a chiropractor, an allergist, sought acupuncture and visited a faith healer.

"You become desperate after a while," Dubin said. "It makes me understand why people when they're desperate go to Mexico to buy drugs that aren't used here."

Several doctors told Dubin it was just stress and sent him to a psychiatrist. Anti-anxiety medication eased his symptoms, but he had to take larger and larger doses to get the same relief.

He had panic attacks when he stopped taking the pills.

"Before people understood this, these things were misdiagnosed a lot, especially because many of these movement disorders come and go," said Shulman. "People had first thought it was a psychological problem. Now we know that surely isn't the case."

Dubin began to feel he was a burden to friends and family, who had to drive him around. He was grateful, but interactions with other people had become difficult and he began to avoid social gatherings.

"People started to notice," said Dubin. At the time he'd often close his eyes in mid-conversation. "I was looking kind of funny sometimes."

Shulman said that's a common reaction.

"One thing about movement disorders that is really unique among medical conditions it that they're very obvious," said Shulman. "These people go through quite a bit of embarrassment and sometimes stigma."

Finally, in 1987, Dubin participated in a clinical trial at Johns Hopkins Hospital, in which he was given botulinum toxin, or botox, injections to relax his muscles.

Botox was originally used as a treatment for medical conditions "way before (it) was known as a treatment for wrinkles," said Shulman.

A few days later, Dubin felt the difference.

"I didn't have to think about my eyes at every moment," he said.

Now, he gets an injection about every three months in his forehead above his eyebrows and below his eyelids. He still takes half of the smallest dose of anxiety medication, which works in conjunction with the injections.

More than 40 million Americans suffer from movement disorders, according to We Move, a nonprofit organization promoting education about the conditions. More than 90,000 people suffer from various forms of focal dystonia such as blepharospasm.

For Dubin, meeting other people with blepharospasm was a comfort. He holds occasional support groups for others with the condition.

A fellow sufferer once told him that she was questioned by a policeman for standing on a street corner, after he mistook her erratic blinking for an attempt to solicit, he said, chuckling.

In most cases, the cause of a movement disorder remains unknown, but stroke, head injury and, in some cases genetic predisposition can lead to the conditions, said Shulman. "As we learn to treat one better, we'll know more about how to treat many others."

Since Dubin was diagnosed, physicians have a better understanding of the disorder and its treatments, he said. The years he spent searching for relief were difficult, but he learned to cope.

"I wouldn't wish it on anybody," said Dubin. "But what you really learn is you can't give up. You have to keep searching for an answer."

The Capital News Service contributed to this report.