Richard Withenberg hopes that an innovative tool resembling a wristwatch will give him insight about what happens to him while he’s sleeping.
"I’d get up every two hours, and that would wake her up," Withenberg said. "But what’s strange is — even though I don’t have the shakes during the day, like most patients with Parkinson’s — what my wife tells me is when I sleep, I have some movement. This was something I was not aware of."
Tracking the Disease
To learn more about the presence and fluctuation of Parkinson’s symptoms, a Cedars-Sinai research team developed the Personal KinetiGraph (PKG) data logger, which tracks the movements of Parkinson’s patients every two minutes over six to 10 days.
The data enable neurologists to generate reports showing the fluctuations of symptoms throughout the day and also when patients take their medication.
The U.S. Food and Drug Administration cleared the device in late 2014, and Michele Tagliati, MD, director of the Movement Disorders Program, and Echo Tan, MD, launched a 60-patient clinical trial to study its effectiveness.
Michele Tagliati, MD, describes how the PKG device works.
One of the biggest challenges neurologists face when managing Parkinson’s patients is making treatment decisions based on brief patient interactions and subjective reports about symptoms. "We get to see our patients three or four times a year, max," Tan said. "They have to take the last four months and condense it into a few sentences."
The PKG could improve the quality of life for patients with the disease and better inform neurologists who treat them. "It’s virtually impossible to make a well-informed treatment plan based on how patients feel they have been doing in the last three months, because often they don’t remember," Tagliati said. "The PKG device provides a quantitative way to monitor and understand the fluctuations of movements in our patients when they are not in the office."
The study includes patients at all stages of the disease. One of them, 74-year-old Robert Yelin, was among the first Parkinson’s patients in the U.S. to use the device. He credits it with providing Tagliati with an accurate log of his fluctuations.
"It makes it more objective, as opposed to subjective," Yelin said. "Like the pain scale, for example. They ask you to rate your pain on a scale of zero to 10, but my five might be your nine, or my five might be your one."
Parkinson’s disease is a brain disorder that affects the ability to control body movements. People with the disease often continue careers and lives for years. Effectively managing therapies is key to maintaining their health.
Tagliati said such information can enhance doctors’ understanding of the nature and progression of the brain disorder, which affects 60,000 new people each year. "This technology could help us as physicians better inform our patients of treatment options, such as when to have an aggressive therapy, like deep brain stimulation," Tagliati said. "A more refined approach to treating the symptoms of the disease will ultimately lead to a better quality of life for our patients."
Tan said the preliminary findings have been valuable. She recalled one patient who said his medication stopped working after three hours, even though the report generated by the PKG showed that the drug hadn’t worked at all. The information prompted Tan to change the patient’s prescription.
"It’s been very helpful by showing me what the patient is trying to describe," Tan said.