Once the tremors begin, so do the rumors. Celebrities like Muhammad Ali, Michael J. Fox and Janet Reno have highlighted the shaking, loss of motor control and coordination that are hallmarks of Parkinson's disease.
But for many patients, it's the symptoms that receive far less attention — like sleep disorders, depression, sexual dysfunction and severe constipation — that can make the disease even worse.
After undergoing deep brain stimulation a year ago to treat the motor symptoms of the disease, Bill Mader, 65, no longer needs a wheelchair to get around. But the Hudson resident, who goes by "Duke," continues to struggle with insomnia, constipation and rapid changes in his blood pressure that leave him fatigued.
"It's small things that have been so hard," he said. "The side symptoms, unfortunately, make the Parkinson's much worse."
At least, Mader says, he has found an understanding neurologist in Dr. Theresa Zesiewicz, medical director of the Parkinson's Disease Clinic at the University of South Florida's main campus.
She is also the lead author of a new set of national guidelines on treating the nonmotor symptoms of Parkinson's disease. Zesiewicz has gained a firsthand understanding of their impact while caring for her 85-year-old mother, who is in the end stages of the disease.
"These are symptoms that are very under-recognized and under-treated in terms of Parkinson's disease," she said.
In Parkinson's disease, certain nerve cells in the brain waste away, resulting in the loss of muscle coordination and other issues. The condition, which can affect both men and women, usually sets in after age 60.
In her mother, Zesiewicz witnessed how much quality of life can deteriorate for the 90 percent of Parkinson's patients who experience sleep disorders.
She saw her mother lose her sense of smell and taste, symptoms that often precede the tremors, and suffer through a range of gastrointestinal problems associated with Parkinson's disease.
"You see 20 patients a day, then you come home and you live with it," Zesiewicz said. "It's different when you see what it means to live in a bed and take liquid food because of the swallowing issues."
Zesiewicz is grateful that her mother is not among the 50 percent of Parkinson's patients who suffer from depression, which may result from neurological changes as well as the difficulty of living with the disease. Depression also can be a precursor to the classic symptoms of the disease.
Many patients are embarrassed to talk to their doctors about issues like sexual dysfunction and extreme constipation, which can result in painful bloating and loss of appetite.
So Zesiewicz, working with a committee of the American Academy of Neurology, reviewed the scientific literature on treatment options for such symptoms in patients with Parkinson's to produce standards for diagnosing and treating these problems.
The guidelines, published this week in the medical journal Neurology, identified medications found to have helped relieve constipation, excessive daytime sleepiness and erectile dysfunction in Parkinson's patients.
But not enough is known about treating loss of bladder control, insomnia and anxiety in Parkinson's patients. "We are woefully behind in the research studies on a lot of these nonmotor symptoms," Zesiewicz said.
While more research funding is needed, Zesiewicz said neurologists treating patients with Parkinson's disease also must better coordinate with other specialists, including urologists and doctors specializing in gastrointestinal disorders.
Letitia Stein can be reached at firstname.lastname@example.org or (813) 226-3322. For more health news, visit www.tampabay.com/health.