Hospitals can be a danger zone for people with Parkinson’s disease
Read this Examiner.com article about the National Parkinson Foundation's Aware in Carehospitalization campaign and its importance to the Parkinson's community.
Hospitals are usually a safe haven for people with serious illnesses, but for people with Parkinson’s disease (PD) going to the emergency room or being hospitalized can be a nightmare, because their condition is more likely to deteriorate due to inappropriate care and the anxiety of being in an unfamiliar environment.
Parkinson’s disease is the 14th leading cause of death in the United States, said Joyce Oberdorf, president and chief executive officer of the National Parkinson Foundation (NPF). The disease affects about one million Americans, many of whom are frequently hospitalized, yet many healthcare providers are woefully uninformed about how to care for Parkinson’s patients.
A recent study conducted by the University of Florida Center for Movement Disorders & Neurorestoration found that people with Parkinson’s are 50 percent more likely to visit an emergency room or be hospitalized due to injuries from falls or other disease-related medical problems like heart attacks, pneumonia and urinary tract infections.
Once admitted to the hospital, the study revealed that Parkinson’s “patients have a higher risk of complications, which contributes to longer hospital stays and a greater chance of being discharged to a nursing home. Collectively, these issues reduce a patient’s quality of life and increase costs of care.”
Parkinson’s patients are often afraid to challenge a hospital’s medical staff, because they assume that they know what they are doing, but many may have little or no knowledge about how to care for someone with Parkinson’s, said Dr. John Morgan, assistant professor at Georgia Health Sciences University.
Three out of four people with Parkinson’s do not get their medication on time when they go to the hospital, which can cause serious complications even death, said NPF’s National Medical Director Dr. Michael Okun. Even more alarming is that research shows that the majority of hospital staff do not know which drugs are unsafe for Parkinson’s patients, and they do not understand Parkinson’s disease.
People with Parkinson’s must take their medication on time, especially those with moderate and advanced Parkinson’s who are taking frequent doses of levodopa, a common Parkinson’s medication, Dr. Morgan said. “If medication is not taken on time, they can become stiff, rigid, tremulous and unable to move and prone to falls, etc. Even one hour off of a scheduled time can make a big difference,” Dr. Morgan explained.
“When I went to the hospital previously it was a real frustrating battle,” said 71-year-old Marty Gershe, a resident of Aventura, Florida who has been hospitalized many times since being diagnosed with Parkinson’s four years ago. He said even though he informed the emergency room of his medication schedule, it was a constant battle to get his medication on time.
“In my case, if I don’t get my meds on time when I’m supposed to, I can’t function. My speech is affected, my walking is affected and just my general well-being [is affected],” Gershe added.
Karen Anderson, from Tigard, Oregon, also recounted a traumatic hospital experience she and her husband, Roger, had in a recent edition of NPF’s Parkinson’s Report. She said when Roger, who has Parkinson’s, had to have surgery for a herniated disc, she informed all of his doctors and nurses about his medication schedule, but he still did not get his medication on time, and he was given a drug not meant for Parkinson’s patients. As a consequence, she said Roger suffered from hallucinations, and he could not communicate with his doctor.
“It was a horrible nightmare that I could not wake up from,” recalled Karen, who has spent the past 20 years advocating for her husband who was diagnosed with Parkinson’s at the age of 47.
According to the NPF, Parkinson's disease is a slowly progressive neurological disorder that occurs when certain nerve cells in the brain called neurons die or become impaired. These neurons produce dopamine, a vital chemical that transmits messages to the part of the brain that controls movement and coordination. As the disease progresses, the amount of dopamine in the brain decreases, leading to uncontrollable shaking in one or both sides of the body and difficulty walking.
The primary motor symptoms of Parkinson’s are tremor (shaking), slowness of movement, stiffness or rigidity in the arms, legs or upper body, and trouble maintaining balance also known as postural instability. Patients also suffer from other symptoms including a decrease in automatic reflexes like blinking and swallowing, muffled speech, sleep disturbance, depression, anxiety, constipation, lack of facial expression, confusion, hallucinations, urinary changes and memory loss.
Although people with Parkinson’s share similar characteristics, Dr. Morgan said Parkinson’s is an individualized disease, so the disease affects everyone differently and the rate of progression varies. “We see patients who have mild PD treated with milder PD drugs not requiring levodopa for 10 years on occasion. We also see someone with three years of disease with marked rigidity and slowness requiring levodopa four to five times a day.”
While Parkinson’s is more common in the elderly, with an average age of diagnosis at 62, NPF officials say 15 percent of those diagnosed are under 50 years old.
There is no cure for Parkinson’s, but medication helps control symptoms by increasing the levels of dopamine in the brain. Dr. Morgan emphasized that medications should be taken 30 minutes to an hour before meals or an hour or more after meals, because the protein in food can inhibit the absorption of the medication into the body. If a person eats too close to their scheduled medication time, Dr. Morgan said it is better to eat a low-protein meal rather than delay taking medication.
Hospital visits can also be dangerous for people with advanced Parkinson’s, Dr. Morgan said, because they are more prone to hallucinations and delusions from narcotic pain medication and other drugs that may be administered in a hospital.
Infections like urinary tract and lung infections can also cause confusion. Therefore, Dr. Morgan said, “Minimization of narcotics and making sure that there are no ongoing infections is important as well.”
Additionally, doctors say the stress of being in an unfamiliar environment can send Parkinson’s patients, especially older patients, into a delirious state, which can also cause hallucinations or delusions, and lead to behavioral problems such as aggression and refusal to take pills. In these cases, Dr. Morgan recommends that a caregiver who is familiar to the patient stay with him or her in the hospital.
The NPF has launched an Aware in Care Campaign to improve the care of Parkinson’s patients in hospitals by helping them and their caregivers prepare for hospital visits, and educating healthcare providers about Parkinson’s and the importance of medication timing.
The campaign encourages Parkinson’s patients to be proactive and vigilant when dealing with hospital staff by speaking up or having an advocate who can monitor their care, and make sure that everyone on their medical team understand their symptoms and medication needs.
Research shows that switching from a brand-name Parkinson’s medication to the generic version or from one generic to another may cause adverse reactions, so patients should avoid changing manufacturers, and they should take their medication in their bottles with them to the hospital.
The NPF is offering an Aware in Care kit for people with Parkinson’s and their caregivers. It includes a Hospital Action Plan; a Parkinson’s ID bracelet; handouts for healthcare providers that specify what drugs to avoid giving Parkinson’s patients; and medication forms for patients to document their medications, dosages, their medication regimen and emergency contacts.
Gershe said the kit helped him receive better care in the hospital. To order a free kit, call 800-473-4636 or go to http://www.awareincare.org.
—Shirley L. Smith
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