Published January 23, 2023
Misinformation may be preventing people with Parkinson’s disease from getting the best treatment. Neurologist Veronica Santini, MD, clinical chief of Movement Disorders at Yale New Haven Hospital, provides insights about managing the disease with medication.
“Taking medication several times a day can be a huge mental hurdle for someone newly diagnosed with a neurodegenerative disease,” said Dr. Santini. “However, it’s key to remember that while Parkinson’s is a progressive disease, it is not fatal and people can enjoy a good life with the disease.”
Additionally, because the disease progresses so slowly, some people may not notice changes that lower their quality of life.
“During an appointment we learn a lot by asking specific questions,” said Dr. Santini. “One patient said he was doing great, but when I asked him if he was still playing the guitar he mentioned he had stopped several months prior. This is an activity he loved and did his whole life and this information encouraged us to discuss starting a new medication.”
Another reason people with Parkinson’s are under-medicated is prevailing myths about levodopa, the gold standard medication for Parkinson’s disease.
“People with Parkinson’s are missing a brain chemical called dopamine,” said Dr. Santini. ”Dopamine is like the oil of the human body machine. It allows us to move smoothly and with rhythm. Levodopa supplements the dopamine missing in the brains of people with Parkinson’s disease.”
Dr. Santini explained that levodopa cannot reverse or slow the disease (exercise may be the only thing so far that has the potential to do that) but it can allow people to do the activities they enjoy.
When people on appropriately prescribed levodopa continue using their body the way it was meant to function, evidence shows they have less disability later in life.
“I often come across patients who believe the medication only works for a few years and therefore they want to save the medication for when their disease gets really bad. This is not true,” said Dr. Santini.
Dr. Santini explains that the dose of levodopa will always increase over the course of the disease as the brain chemical deficiency grows. “If we wait too long to take medication, it becomes harder to catch up and people sometimes acquire irreversible disabilities.”
There are several studies in peer-reviewed journals that now better show that the emergence of dyskinesia is based on the stage of the disease rather than the length of time someone is exposed to the drug.
“Dyskinesia is dose-related,” Dr. Santini confirms. “Whether or not someone develops dyskinesia has nothing to do with length of time on the medication.”
“This is where the art of medicine comes in,” said Dr. Santini. “Patients and providers need to build a trusting relationship. For me that means sharing what comes up on their examination and discussing the latest research so patients are as informed as possible.”
Know your medications. When do you take them? What is the dose? Do you take them with food?
How is the medication you are taking working? Note the overall effect and the immediate effect on your symptoms. This can help tease out what is a side effect of the medication, what is part of the disease process, and how the medications are working to cover symptoms.
Keep a symptom diary. This can be a paper diary or even a symptom-tracking app.
Track one activity over time. Maybe it is tying your shoe, taking your wallet out of your pocket or playing guitar. Tracking one or two activities allows physicians see progress accurately.
Dr. Santini added that even if a patient disagrees with a recommendation, “we can still partner on the best path forward.”
