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People often think of Parkinson’s disease as simply a movement disorder, but it also has nonmotor symptoms — symptoms unrelated to movement. Many people living with Parkinson’s show 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.
Behavioral changes can be a symptom of Parkinson’s, or they may be a side effect of medication.
Members of MyParkinsonsTeam have described many behavioral changes that range from annoying to life-threatening. Some people with Parkinson’s disease struggle with anger or impulsive behavior that can affect 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 have an impact on 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.
Read on to learn about five behavioral changes to watch out for, including how common they are, what causes them, and how they can be treated.
Among the most startling changes for people with Parkinson’s are problems with impulsivity (impulse control) 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 has 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 getting really into creative projects. One member began making wooden flags to sell, giving some earnings to organizations for veterans.
At least 14 percent of people living with Parkinson’s experience obsessive and impulsive behaviors. Problems with impulse control and symptoms of OCD tend to show up after a person starts taking dopamine agonist medications, including:
Impulsive behaviors are especially common in people taking both a dopamine agonist and levodopa/carbidopa.
Impulsive and obsessive behaviors are likely caused by the effect of Parkinson’s medications on dopamine in the brain. Sometimes called the “pleasure chemical,” dopamine is a chemical produced in the brain that is important for movement and motivation. Parkinson’s disease damages dopaminergic neurons — cells that produce dopamine.
Dopamine agonist drugs act like dopamine in the brain. Increased dopamine activity in the brain helps with motor dysfunction, but it also boosts the brain’s 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.
Always let your doctor know about new behaviors that are troubling you. Decreasing or stopping a dopamine agonist and switching to levodopa extended-release often helps to alleviate these symptoms. Your doctor may also wish to prescribe a different medication or see if you might be a candidate for deep brain stimulation. Support groups for impulsive behaviors such as gambling may also help.
People experiencing apathy lose interest in things they previously enjoyed and may have less of an emotional response 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 she was 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 on in the disease, before they are even diagnosed with Parkinson’s.
About 40 percent of people living with Parkinson’s disease will experience apathy at some point in the course of disease progression.
The root cause of apathy in Parkinson’s is unclear. Apathy is a common symptom of depression, and around 35 percent of people with Parkinson’s experience depression or depression-like symptoms, according to data cited in Nature Reviews Neurology. 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. Other studies found that exercise and mindfulness meditation helped some people with Parkinson’s feel less apathetic. If the apathy is related to depression, psychotherapy and medication may help with other depressive symptoms.
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 irritability increases stress among people with Parkinson’s, and it can worsen other behavioral symptoms and interpersonal conflict.
Between 20 percent and 50 percent of people with Parkinson’s disease experience anxiety. Anxiety tends to begin early in the course of the disease and may worsen over time. Scientists aren’t sure whether panic attacks and irritability are caused by Parkinson’s disease or by mood disorders like depression and anxiety that occur alongside Parkinson’s.
Some MyParkinsonsTeam members recommended lifestyle changes like living separately or stepping away when an argument escalates. For some people, anti-anxiety medication like benzodiazepines or cognitive behavioral therapy can help with these symptoms. Ask your doctor for help with feelings of panic. They can help you find support groups and offer referrals for behavior therapy.
Among the most troubling neuropsychiatric symptoms in Parkinson’s disease are hallucinations and psychosis. Hallucinations may include:
One MyParkinsonsTeam member said that “shadows become demons and spirits.” Another member’s husband had delusions that the couple invited people over when they hadn’t even spoken to them.
Some types of hallucinations are more common than others. For example, visual hallucinations occur in 22 percent to 38 percent of people with Parkinson’s, according to findings in the Journal of Korean Medical Science. Auditory hallucinations occur in up to 22 percent of people with Parkinson’s.
Hallucinations can begin in the early or later stages of the disease and may increase over time. People who experience hallucinations before the 5.5-year mark of the disease typically have clear movement problems early on and are on high doses of medications. Hallucinations and psychosis that develop in the later phases tend to be associated with cognitive decline.
The cause of psychosis in Parkinson’s 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 potentially harming themselves.
Cognitive impairment and dementia are common in progressive neurological conditions, such as Parkinson’s disease and Alzheimer’s disease. Unlike in Alzheimer’s disease, however, people living with Parkinson’s experience issues with planning, attention, and motivation sooner than they develop memory problems.
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 cognitive impairment to advance to dementia.
The root cause of impaired cognition in Parkinson’s is unclear. It may be caused by the neurological effects 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. There are medications that can help. You might also use an app to play brain-stimulating games and memory games. Your doctor can recommend some for you to try.
Guidance from medical professionals is crucial, but advice from other people with Parkinson’s can make the difference between living and thriving. The following are suggestions from MyParkinsonsTeam members to manage the behavioral changes in Parkinson’s disease.
If you have Parkinson’s, be kind to yourself. If your loved one has it, give them grace while also taking care of your needs and well-being.
Take the quiz: Is Your Parkinson’s Causing Behavioral Changes?
MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 101,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.
Have you or a loved one had behavioral changes with Parkinson’s? What tips do you have for managing those changes? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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A MyParkinsonsTeam Member
My husband is home with me and challenges everything. His reality is different from what is really going on. At first, I fought back but then I realized he has no control over any of his behavioral… read more
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