While reviewing data from the National Parkinson Foundation’s (NPF) Parkinson’s Outcomes Project a year ago, I noticed a participant whose quality of life went from pretty good to terrible, then back to pretty good. I wondered, “what happened here?” The answer: psychosis.
About a third of people with Parkinson’s disease (PD) will experience psychosis at some point in the course of their disease. Sometimes it can manifest as a result from improper medication dosages or from the disease itself. Psychosis is a scary term that includes many symptoms, but it boils down to seeing, hearing, experiencing or believing things that are not real.
Fortunately, under expert care and with the right treatment, PD associated psychosis can be managed. Many people who experience symptoms like hallucinations (seeing things that are not there) or delusions (believing things that are not true) can improve with treatment. I’ve spoken with families who say that treatment cleared up symptoms or that their loved one still sees things that are not there, but understands that they aren’t real. This is a huge relief for patients and families.
However, PD associated psychosis can be challenging for physicians because most antipsychotic drugs are not made for people with Parkinson’s. Medications for psychosis typically work by blocking dopamine in the brain. But since Parkinson’s symptoms result from the brain producing too little dopamine, blocking it can be dangerous.
Because psychosis can be caused by getting a patient’s medications wrong, NPF’s Centers of Excellence determined that patients tend to develop symptoms of psychosis when they are hospitalized because once they are admitted, people with PD experience a sudden change in medication and scheduled dosages. NPF researchers found this when we studied hospital care, which led to the development of our Aware in Care hospitalization kit. The Aware in Care kit helps patients be their own advocate and includes strict instructions for drugs to treat psychosis and Parkinson’s, as well as what medications hospital staff should not give people with Parkinson’s.
Earlier this year the Parkinson’s community had some good news: a new drug, pimavanserin (brand name: Nuplazid), became the first antipsychotic drug to specifically target Parkinson’s disease associated psychosis. The U.S. Food and Drug Administration (FDA) extensively reviewed pimavanserin as they do all approved medications. After outside experts recommended approval, the FDA conducted its review process to carefully consider the new drug’s risk versus benefit trade-off. They heard powerful testimonies from families of patients who participated in the clinical trial advocating for the approval of pimavanserin. When an antipsychotic medication works for a patient, it can be life-changing. Ultimately, the FDA approved pimavanserin because they found it to be both safe and effective enough to be made available to the patients in the Parkinson’s community who need it.
This new drug is a big development because doctors and people with PD are not happy with other psychosis drug options. All antipsychotics are powerful drugs that can have serious side effects, but there is hope that pimavanserin could provide a better option that combines safety and efficacy for people with PD.
In June 2016, at the annual Movement Disorders Society meeting, I presented new research from our Parkinson’s Outcomes Project on the burden of untreated psychosis in Parkinson’s. What is so striking about this research is that we found that for those people with PD who can tolerate their Parkinson’s medication dosages, expert treatment can completely alleviate the burden of psychosis.
At NPF, our cutting edge research focuses on therapies and treatments that make life better for people who have Parkinson’s today. This has uniquely positioned us to understand the impact of new treatments that promise to slow Parkinson’s or change its impact.
For more information about Parkinson’s disease associated psychosis, order your free copy of the NPF book Psychosis. If you have questions about Parkinson’s disease associated psychosis and would like to speak with a Parkinson’s specialist, please call the NPF Helpline at 1-800-4PD-INFO (1-800-473-4636) or send an email to firstname.lastname@example.org.
Dr. Fernando Cubillos is NPF’s Director of Research Programs, where he leads operations for the Parkinson’s Outcomes Project. He brings to this role seven years of experience with the Cystic Fibrosis Foundation’s registry project, an effort that has revolutionized CF care as profiled by Atul Gawande’s article, The Bell Curve, and has used that experience to help guide the Parkinson’s Outcomes Project. Prior to joining NPF, Dr. Cubillos worked for the University of Miami in pulmonary and critical care, where he coordinated in-patient and out-patient clinical trials and trained and supervised clinical and research staff. Trained as a medical doctor and surgeon in Colombia, Dr. Cubillos practiced medicine for ten years before coming to the United States.