Movement Disorders Program helps patients control symptoms

Joann Clark awoke one morning almost five years ago, the pinky on her right hand twitching nonstop, uncontrollably.

She thought, “On no, not that.” Her family had a history of Parkinson’s disease. Finally, she could ignore it no longer. Almost four years ago she was diagnosed with a rare “familial,” or genetically inherited form of the disease.

"My symptoms are under control and I feel great. I always tell Dr. Litvan, ‘You saved my life!’" —Joann Clark

Her family doctor referred her to a neurologist. He told her, “You’ll probably be in a nursing home within four years.”

The message was one of hopelessness.

“But that’s not my way,” Clark says. “I’m a fighter, a warrior.”

Clark, a Louisville native who lives in Jeffersonville, Ind., and her siblings enrolled in an Indiana University program to investigate familial Parkinson’s disease.

“That’s when they told me to go see Irene Litvan,” a Parkinson’s disease specialist at the University of Louisville, says Clark. “They said she was the best in the field.”

Litvan, who directs the Movement Disorders Program at UofL, came to Louisville in 2002 to study and treat an underserved population: people with Parkinson’s and related movement disorders.

Since then, Litvan has assembled a first-rate team of researchers and clinicians that successfully competed to lead a multi-center, $3.4 million National Institutes of Health-sponsored study of Progressive Supranuclear Palsy, a rare movement disorder. Last year, the National Parkinson's Foundation designated UofL's Division of Movement Disorders as a Parkinson's Center of Excellence. The research at UofL is enhanced through a clinical partnership with Frazier Rehab, where patients receive treatment.

The presence of Litvan and the program she established in Louisville has meant less travel to faraway cities for care by patients.

John Schwartz, president of the board of the Parkinson's Support Center of Kentuckiana (PSCK), agrees. PSCK pledged a $650,000 gift to the program, which established an endowed fund for research. The gift qualified for a $500,000 match from the state’s Bucks for Brains program, which matches philanthropic gifts for research.  

Clark says she can’t say enough good things about the program. Most of all, she says, it has given her hope.

“Dr. Litvan adjusted my medication so I wouldn’t have the hallucinations I was having before and she urged me to get regular exercise.”

As a result, Clark joined a water aerobics program at the YMCA in Jeffersonville. “When I first went there, I could hardly walk without holding onto the side of the pool.”

But soon Clark was walking unaided in the pool. Now she teaches others with Parkinson’s and similar conditions requiring therapy on how to stay fit.

“I teach 20 to 30 people a couple of times a week and we all stay healthy together,” she says. “I sent several of them to Dr. Litvan and they come back to me and thank me for it. She are her crew are the best there is—just the best. My symptoms are under control and I feel great. I always tell Dr. Litvan, ‘You saved my life!’”

Joan Clark teaching a water aerobics class