Andrée Jannette, of West Chester, Pennsylvania, knows the feeling of being in a hospital and desperate to let nurses and doctors know — before anything else — that she has Parkinson's disease.
She was diagnosed with the neurodegenerative brain disorder in 2007 and has read the research showing that 3 out of 4 people hospitalized with Parkinson's do not receive medications on time. She's had to be her own advocate in situations such as when a bad fall landed her in the emergency room.
"Sometimes people will think that you're drunk or have had a stroke or something,” she says of the outward signs of the disease — such as stiffness, tremors and difficulty speaking.
That's why she wears a medical ID bracelet and keeps a Parkinson's Foundation Aware in Care hospitalization kit in her purse with extra doses of her medicines and vital information about Parkinson's disease.
Aware in Care
About 1 million people in the United States have Parkinson's. Neurologist Michael Okun, medical director for the Parkinson's Foundation and chair of neurology at University of Florida Health, says it is the fastest-growing neurological disorder in the world. One of the things that's most troubling for patients, Okun says, is communicating their needs when they're admitted to the hospital.
For years, Okun ran the foundation's “Ask the Doctor” forum, and he continues to weigh in on the online forum “PD Conversations,” where he keeps hearing the same stories.
"One of the common themes is that the nurses, the staff at the hospital, however well-meaning they were, they were not prepared to take care of the Parkinson patient,” he says. “They didn't have appreciation for the importance of getting medicines on time, every time. They didn't have appreciation that certain commonly used medications in hospitals can actually harm a person with Parkinson's” because of potential complications.
Parkinson's Foundation research shows that 2 out of 3 people with Parkinson's experience unnecessary complications related to not getting their medications on time when hospitalized. These includes falls, confusion and longer hospital stays.