Dancing Through Parkinson's
After being diagnosed in 2006, Berghoff decided to teach herself and others how to work with the disease and move past it.
At least three times a week, in studios throughout Southern California, Berghoff teaches Dancing Through Parkinson’s. The class encourages strength, mental clarity, stability, joy, creativity and, above all, community for people with the disease (and some without it).
"This disease can be very isolating, especially if your symptoms are worse, and I get it," said Berghoff, 66. "But after an hour of dancing and thinking about other things, you walk out feeling different. Everybody says that. You feel better, and you walk out stronger, because you’re doing something to help yourself."
Dancing isn’t an official remedy for Parkinson’s disease, but Berghoff’s neurologist, Michele Tagliati, MD, encouraged the practice. He said it promotes healthy living and works on abilities that can be compromised as a result of the degenerative disease, such as concentration, balance, turning and speaking.
"What we do see — and it is shown with patients like Linda who have a slow- progressing form of Parkinson's — is that she’s able to take up dance and benefit from it for a long time," said Tagliati, director of the Cedars-Sinai Movement Disorders Program in the Department of Neurology.
"While others are free to choose different passions, Linda has chosen a particular mission of dance therapy," Tagliati added. "Not only that, she has devoted most of her personal time to developing this alternative style of treatment to help others in this community. In many ways, she is a true pioneer."
Parkinson's disease usually occurs relatively late in life and progresses slowly. In five to 10 percent of cases, the disease may develop in those younger than 50. Diagnosed at 56, Berghoff was still younger than the average person diagnosed with the disease.
Signs and symptoms of Parkinson’s include slow movement, tremors, stiff or rigid muscles, changes in speech, and difficulty with balance and posture. Patients may also experience trouble sleeping, constipation, unstable blood pressure, depression and loss of smell.
Berghoff at first ignored signs of the disease, blaming clumsiness when she repeatedly tripped, or getting old when her body resisted certain dance moves. But while she was on vacation in New York, her left leg wouldn’t stop shaking. This was the red flag she couldn’t ignore. While there, she saw a neurologist, who diagnosed her with the disease.
Berghoff’s family history of Parkinson’s raised an immediate sense of fear.
"I thought it was a dirty trick, because I had always taken care of myself," Berghoff said. "I’m independent, and the thing with Parkinson’s is most people lose that, and I didn’t want to be dependent on anyone."
Back home, Berghoff found comfort at Cedars-Sinai with her family’s neurologist, Clarke D. Espy, MD. He pointed out that her left leg dragged and her left arm did not swing.
When Tagliati joined the hospital in 2010, Berghoff immediately sought his expertise and became one of his first patients. Tagliati monitored her symptoms, which have now progressed to her voice, and gradually put her on small doses of medication to help manage the tremors and help Berghoff feel like herself again.
"The way you manage the disease in the beginning in many ways helps prevent long-term complications," said Tagliati, one of the nation's leading research and treatment specialists in Parkinson's disease and other movement disorders. "This is why it is very important to see a specialist from day one."
For Berghoff, having a neurologist who is well-versed on the disease put her body and mind at ease.
"Everyone with Parkinson’s disease is scared, because you don’t want to lose yourself," Berghoff said. "With Dr. Tagliati, he gets it. He’s compassionate, and he’s sharp. He makes everything about you."
Berghoff started dancing when she was 10 and continued into her teens and college. When she had children, she pressed the pause button on the pastime, but resumed later in life, adding Pilates and daily recreational dance classes.
After Berghoff’s diagnosis, a neighbor and friend, Laura Karlin, the artistic director of Invertigo Dance Theater in Los Angeles, reached out to see what she could do to help.
Berghoff recalled seeing a dance program for patients with Parkinson’s while in New York and knew immediately she wanted to do the same back home. With the help of Karlin and the theater, the program became possible. Today, Berghoff leads classes with up to 20 people throughout Los Angeles. Some attendees have the disease; others come to stay active or meet new people.
"Even though I'm not a professional dancer, I know what others are going through, like when they can’t do something or when balancing is tough," Berghoff said. "I understand the way the body works, as a dancer, and having Parkinson’s myself, I understand and appreciate the challenges I and others have. And my dance background helps me develop strategies to move with Parkinson's."
At a recent Dancing Through Parkinson’s class at the Electric Lodge Performing Dance Center in Venice, Berghoff had dancers stomping their feet, snapping their fingers, humming, stretching and participating in games in which they would act out a verb through body movements.
With every turn, sound and kick, the dancers exercised their brains, bodies and memories. Personalities radiated. For a while, some dancers forgot about their ailments.
"The trick is to make people believe we are all dancers," Berghoff said with a laugh. "People who come the first time always say, 'I'm going to watch. I can't dance.' But I believe everyone has rhythm and joy inside of them. You just have to open your arms to that."