People often think of Parkinson’s disease as simply a movement disorder, but it also has nonmotor symptoms. Many people living with Parkinson’s display behaviors that are troubling to the person and their family. These behavioral changes can be a symptom of Parkinson’s, or they may be a side effect of medication.
Members of MyParkinsonsTeam have described an array of experiences with behavioral changes. Some people with Parkinson’s disease struggle with anger or impulsive behavior that can impact their friends and family members. Others have hallucinations that cause them to act in ways that don’t make sense to their caregivers. In addition, attention and motivation problems are common and make everyday tasks harder. These behavioral changes can sometimes impact quality of life and put people with Parkinson’s in danger.
Fortunately, there are treatments that can help. With careful monitoring and support from loved ones, people living with Parkinson’s disease can manage these behavior symptoms and sometimes even use the symptoms to their advantage.
Among the most startling changes for people with Parkinson’s are impulse control disorders and obsessive behaviors. Some people start gambling or overspending, for example. One MyParkinsonsTeam member stayed up all night shopping and bought 10 surfboards in a short amount of time.
Many members of MyParkinsonsTeam have also found that their sex drive skyrocketed. One member said their increasing sexual needs were too much for their partner and strained their marriage. Another member, however, was happy with their “wonderful postmenopausal sexual awakening.”
Some behavioral changes are similar to obsessive-compulsive disorder (OCD) symptoms and can cause real problems for people living with Parkinson’s. For example, a member said their partner started taking things apart and putting them back together, which became a problem when it led to $3,500 in repair bills. Other times, the obsessive behaviors can be productive, like renewed artistic creativity. One member began making wooden flags to sell and donated some earnings to organizations for veterans.
About 14 percent of people living with Parkinson’s experience obsessive and impulsive behaviors. Impulse control disorders and symptoms of OCD tend to show up after a person begins treatment with dopamine agonist medications such as ropinirole (Requip), apomorphine (Apokyn), and pramipexole dihydrochloride (Mirapex). Impulsive behaviors are especially common in people who are taking both a dopamine agonist and levodopa/carbidopa.
These side effects likely develop because of how Parkinson’s medications affect dopamine in the brain. Parkinson’s disease damages dopaminergic neurons — cells that produce dopamine. Sometimes called the “pleasure chemical,” dopamine is a neurotransmitter produced in the brain. It is important for movement and the reward system that helps control motivation.
Dopamine agonist drugs act like dopamine in the brain, and the body turns levodopa into dopamine. The increased activity of dopamine in the brain helps with motor dysfunction. However, it also boosts the reward system, which may cause obsessive symptoms and impulsive behaviors in Parkinson’s. The use of dopamine agonists such as ropinirole has been linked to increased risk-taking behavior and gambling.
Decreasing or removing treatment with the dopamine agonist and switching to levodopa extended-release often helps to alleviate these symptoms. Support groups for impulsive behaviors such as gambling may also help.
People experiencing feelings of apathy lose interest in things they previously enjoyed and may have blunted reactions to what would otherwise be moments of joy, sadness, or anger. Experiencing apathy can be distressing for the person living with Parkinson’s and their loved ones.
MyParkinsonsTeam members have shared some of their experiences with Parkinson’s-related apathy. One member said, “I find myself to be apathetic these last few months. Not in the sense of unmotivated or bored. It’s more like feeling numb. Little do I care if things go wrong. Likewise, I fail to muster happiness when wonderful things happen, like the birth of a baby. I used to feel both joy and sorrow quite intensely.” Another member responded saying that they could barely muster enthusiasm when their daughter announced that they were pregnant.
About 40 percent of people living with Parkinson’s disease will experience apathy at some point in the course of disease progression. Some people with Parkinson’s begin losing interest in activities early in progression before they are initially diagnosed with the disease.
The root cause of apathy in Parkinson’s is unclear. Apathy is a common symptom of depression, and 35 percent of people with Parkinson’s experience depression or depressionlike symptoms. However, many people with Parkinson’s who don’t have depression do experience apathy, so there isn’t a clear cause-and-effect relationship. Apathy may be due to changes in reward centers in the brain.
One small study showed that treatment with the dopamine agonist piribedil may help apathy. If a person is experiencing other depressive symptoms, treating their depression with psychotherapy and medication may help.
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Anxiety during Parkinson’s can contribute to irritability and outbursts that can hurt people with Parkinson’s and their loved ones. A MyParkinsonsTeam member said they developed new intense jealousy and panic attacks when they couldn’t reach their partner by phone. Another member who is caring for a partner with Parkinson’s said their partner’s irritability has led them to fight nearly every day. The increased irritability compounds the stress that people with Parkinson’s are feeling, and it can exacerbate other behavioral symptoms and interpersonal conflict.
Between 20 percent and 50 percent of people with Parkinson’s disease develop issues with anxiety. Anxiety issues tend to begin early in disease progression and may worsen over time. Scientists aren’t sure whether panic and irritability are caused directly by Parkinson’s disease or by comorbid mood disorders like depression and anxiety disorder.
Some MyParkinsonsTeam members recommended lifestyle changes like living separately or stepping away when an argument escalates. For some people, antianxiety medication like benzodiazepines can help with these symptoms, as can cognitive behavioral therapy.
Among the most troubling neuropsychiatric symptoms in Parkinson’s disease are hallucinations and psychosis. People experiencing these hallucinations may see things that aren’t there, hear voices, or feel an unseen presence. One MyParkinsonsTeam member said that “shadows become demons and spirits.” Another member’s husband began having delusions that the couple had invited people over when they had not even spoken to them.
The prevalence of hallucinations depends on the type. Visual hallucinations occur in 22 percent to 38 percent of people with Parkinson’s, according to findings in the Journal of Korean Medical Science. Meanwhile, auditory hallucinations occur in up to 22 percent of cases.
Hallucinations can begin in the early or later stages of the disease and may increase with severity over time. People experiencing hallucinations prior to 5.5 years in the course of disease typically have more pronounced early motor disturbances and are on high doses of medications. Hallucinations and psychosis that develop in the later phases tend to be associated with cognitive decline.
The source of psychosis isn’t entirely understood. However, changes to important brain structures could be partially responsible. Some cases of psychosis may be caused by long-term treatment with dopaminergic medication. Deep brain stimulation surgery may also worsen existing psychotic symptoms in some people.
Treatment for Parkinson’s-related psychosis can involve adding antipsychotic medication or reducing the dose of dopaminergic drugs. Regardless, people experiencing these symptoms need careful attention and support from their loved ones and health care providers to prevent them from harming themselves.
Cognitive impairment and dementia are common in progressive neurological conditions such as Parkinson’s and Alzheimer’s disease. Unlike cognitive decline in Alzheimer’s disease, however, people living with Parkinson’s experience issues with planning, attention, and motivation earlier than problems with memory.
A few MyParkinsonsTeam members have talked about forgetting the day of the week and how surprised they were when they checked the calendar. Others have mentioned losing important items like keys and phones.
Between 18 percent and 41 percent of people with Parkinson’s develop dementia or some form of cognitive decline, according to a study in Dialogues in Clinical Neuroscience. In another study, researchers reported that up to 19 percent of people living with Parkinson’s already had mild cognitive impairment at the time of diagnosis. However, it can take as long as 20 years for this impairment to advance to dementia.
The root cause of impaired cognition in Parkinson’s is unclear. It may be caused by the neurology of the disease. Scientists have found that sleep issues are common in Parkinson’s and are associated with cognitive decline.
Your doctor may recommend regular neuropsychiatric evaluations to see if cognitive symptoms are worsening.
Guidance from medical professionals is crucial, but advice from other people with Parkinson’s can make the difference between living and thriving. Following are suggestions from MyParkinsonsTeam members to manage the behavioral changes in Parkinson’s disease.
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