Personal loss inspires dance professor's exercise video for people with Parkinson's

Janet Hamburg, center, leads (left to right) Linda Tuttle, Les Beguelin,Linda Davis and Garry Wheeler in the 36-minute regimen, which adheres to Laban movement theory by focusing on lengthening the limbs and the spine and rotating the spine.

On June 26, 1949, Les Beguelin and his KU bride, Alice Jean Degner, walked down the aisle in Danforth Chapel. "It was a beautiful day," Les says. "My uncle brought confetti, and my cousin painted the side of my almost-new car."

Fifty-four years, three children, 10 grandchildren and three great-grandchildren later, Les and Jean now walk the considerably longer, less solemn aisles in the Lawrence SuperTarget store. Such walks, combined with a KU professor's weekly class, are the Beguelins' faithful rites of exercise.

The simplest of movements are victories for Les, 76, who was diagnosed in January 2001 with Parkinson's Disease, a condition marked by tremors, rigidity and impaired balance and coordination, caused by the brain's gradual loss of the neurotransmitter dopamine. More than 1 million Americans currently have Parkinson's.

Through the local Parkinson's support group, the Beguelins met Janet Hamburg, KU professor of dance, who volunteers to lead the weekly class of seated exercises that she created especially for people with Parkinson's and their caregivers.

"We really appreciate Janet," says Beguelin, c'56. "You read the books about the disease, and it's kind of depressing, but Janet encourages me, just as my wife does. I'm not one of those folks who's going to give up. I'm going to do as much as Janet wants me to do."

So when Hamburg asked Beguelin to participate in filming a video of her program, "Motivating Moves for People with Parkinson's," he agreed.

The three-part, 90-minute video or DVD is now available for $14.95 from the Parkinson's Disease Foundation (see below). In the first section, Hamburg carefully explains each of the 24 exercises. The second part moves through the 36-minute routine, led by Hamburg and featuring Beguelin and three fellow exercisers, all moving to piano music composed for the production by Robert Abramson, longtime professor at The Juilliard School in New York City. The final section demonstrates tips for daily living, such as the proper way to roll in and out of bed or get in and out of a car.

"This is a major contribution to the education of people with Parkinson's and to meeting their needs in the areas of quality of life and well-being," says Robin Anthony Elliott, executive director of the Parkinson's Disease Foundation, based at Columbia-Presbyterian Medical Center in New York City. Researchers there and at other hospitals, he says, are interested in using the video to study the effects of exercise on Parkinson's.

Elliott especially praises Abramson's music. "Each piece gives a mood and style and tone to each exercise," he says. "The music creates a magical feel. It really sounds as if there is something organic occurring between the images, the exercise and the music."

As movement, music and emotion combine to create a seamless whole, the video feels closer to a finely choreographed dance piece than a routine workout. Into her therapy for families coping with a debilitating disease, Janet Hamburg has poured a dancer's passion and precision.

And a daughter's devotion.

Hamburg's mother, Helen, first took Janet to dance lessons when she was 4. Through the years, Janet and her mother attended countless performances in New York City, where a young dancer could see the world's premier companies on-stage.

Helen Hamburg spent her final 13 years in a nursing home, battling Parkinson's and the effects of a stroke. She died in 1999; that year her daughter took a sabbatical, vowing to research therapeutic movements for people with Parkinson's. "I didn't want other people to go through her ordeal," she says.

Hamburg is certified in Laban Movement Analysis, named for Rudolf Laban (1879-1958), a Hungarian choreographer and teacher who created a training and observation method that examines the body's precise execution of movement, from the point of exertion through recuperation.

Laban analysis applies to dance, sports, physical rehabilitation, music performance and theatre. By breaking movement down into its most basic components, the Laban method helps us understand and control our bodies, Hamburg says. "You feel you have a full dynamic range," she says. "Then you have choices. Some movements require strength; some require gentle, free-flowing or exact control, or quick and sudden movements. Awareness of these qualities gives us freedom and control and helps us feel fully alive.

"Parkinson's is one of the few neurological diseases you can live with for decades, but it's a series of losses. People need to feel as if they can still live life well."

The final exercise of the video best illustrates Hamburg's approach to coping with Parkinson's. Called "Silly Faces and Moods," it encourages exercisers to express their emotions through shouts, laughs, frowns and smiles.

"My mother couldn't swallow at the end," she says. "Speaking and swallowing, articulation of the mouth and face, are very important struggles for people with Parkinson's. One of the symptoms is 'masking.' Someone can be so alive and active and yet not communicating that in a conversation, so people think they are disinterested."

Reinforcing the connection between a person with Parkinson's and caregivers is crucial. The brain's loss of dopamine triggers not only physical weakness but also depression, common for anyone facing a chronic illness. Even the smallest emotional exchange, Hamburg says, can help lift spirits and affirm relationships: "There must be an opportunity for intimacy between the patient and the care-giver-a way to say, 'I still love you more than ever.'"

So she seals the video —and her message —with a gesture from friend to friend, husband to wife, or a daughter to her mother: by blowing kisses.

To order "Motivating Moves for People with Parkinson's," visit www.pdf.org, or call 1-800-457-6676.