On a Monday evening last November, a dedicated group of shoppers sipped wine and pored over hundreds of unique rings, bracelets and necklaces at a downtown Des Moines eatery. The festive vintage jewelry sale was organized by friends of Shirley Burke who owned the jewelry, but was relinquishing it to raise money to attend a World Parkinson Congress in Japan.
How the graceful, creative, world-savvy professional got a Parkinson’s diagnosis at the age of 37 remains an inexplicable part of the neurological disease once associated with people in their final chapter of life. But an even less known part of the disease is its link to how she came to own all those jewels. She is sharing her story, ashamed as it makes her, to let other patients and their families know potential side effects of a Parkinson’s treatment she took.
You may know about Parkinson’s impact on motor functions — the muscle stiffness and rigidity; the decrease in voluntary movements and increase in tremors. Burke’s speech was one of the first things to be impacted in 2013. When she started getting dyskinesia, involuntary tremors in her fingers, she stopped eating in public. Her hands cramp up and the toes on her right foot curl painfully.
But Parkinson’s can also wreak havoc on the psyche, bringing cognitive problems, depression and even psychosis. And when you add a dopamine agonist drug, which mimics the effect of the brain chemical dopamine to reduce involuntary spasms, you may be gambling (literally) with fate.
Burke believes the drug caused her to hallucinate, blurred her vision and drove her to compulsive behaviors including shopping and gambling. The shopping was online and at estate sales. The gambling was online and in casinos. When she attended the Fourth World Conference on Parkinson’s, she also heard patients talk of having compulsive sex. “Little did I know,” she said. None of those had been a problem for Burke before her illness. But she says they nearly ruined her life, and led to her “darkest chapter.”
The website of the Michael J. Fox Foundation, named after the popular actor who suffers from Parkinson’s Disease, warns that dopamine agonists can cause hallucination, and, “In some people, these drugs can lead to impulse control disorders, such as compulsive gambling, hypersexuality … and excessive shopping.”
“The outcomes can range from a mere nuisance to disastrous consequences for family and social relationships, finances and careers,” it says.
A 2014 study published in the Journal of the American Medical Association called for better warnings about dopamine agonists. “This relationship has been known for many years but clinicians may have failed to grasp its magnitude and possible implications,” observed the Fox Foundation website, calling on the U.S. Food and Drug Administration to issue an “black box” warning to doctors about side effects.
“The medical community does not appreciate how common these problems are and how serious they may be,” Howard D. Weiss, director of the Parkinson’s Disease and Movement Disorder Programs at the LifeBridge Health Brain & Spine Institute in Baltimore, wrote.
Burke eventually went off the drug, and says the compulsions were gone within a week. But she still has a tough road to walk. “The disease completely changed me to a different person,” says the now 42-year-old. “On the surface everything looks OK but inside, it’s an emotional and mental struggle.”
There is fear and denial where before, there was only drive and determination. “Before the diagnosis (in 2016) I was very bubbly and social. These days I have to force myself. Crowds make me really anxious,” she says.
Born in China, she moved to Ames, Iowa, with her mother in the early 1990s to join her father, who was getting his doctorate at Iowa State University. She earned her master’s in business and was employed by Principal Financial Group in a variety of capacities until her illness made it impossible to work. She had educated the executives and sales force in Chinese cultural and business etiquette, engaged and strengthened partnerships with international businesses, and led an employee resource group for Asian employees. “She is absolutely one of the most driven, amazing women,” said her friend and former colleague Deb Tezak. “There was nothing holding her back.”
Currently she’s on three medications, one of which is made in Japan and has only recently been approved in the United States but is not yet in production here. So she travels there twice a year. There are bright spots in her life, including her supportive family and the larger community of friends and doctors. Also, two years ago, Burke’s parents opened the Heavenly Asian Cuisine and Lounge in West Des Moines. She picked much of the elegant, tranquil decor, and has acquired the trust that owns it.
Taking over daily management, interacting with patrons and employees have brought new purpose and passion to her life and help cover her travel expenses. Though she doesn’t drink alcohol, she has developed a passion for mixology. And under her, every Tuesday, 20% of net sale proceeds are donated to a charity.
There is still no cure for Parkinson’s, whose cause remains unclear. It is believed to be primarily genetic, but triggered by environmental exposures, such as to pesticides. So Burke shares her darkest times and vulnerabilities, hoping the more people know, the more motivation there will be — by doctors, drug companies, federal and private researchers and regulators — to end the scourge and ensure treatments are safe.