“My one tip is to hang in there and never give up hope. Every day is a new day and where there’s life, there’s hope.”
—ANONYMOUS, PWP
People with Parkinson’s may experience hallucinations or delusions. A hallucination is when you think something is present when it isn’t. A delusion is when you maintain a belief in something despite evidence that proves it false or wrong. These symptoms may be caused partly by the actual disease and partly by Parkinson’s medications. Not everyone will experience hallucinations or delusions, but those who do are usually older and have had the disease for a long time.
Types of hallucinations
• Visual (seeing things that aren’t there)
• Auditory (hearing things that aren’t there)
• Tactile (sensing things that aren’t there)
Types of delusions
• Paranoia (e.g., thinking someone is following you when they aren’t)
• Jealousy (thinking people you love are betraying you)
• Extravagance (believing you have special powers)
Some people will be aware they are hallucinating or having delusions while others will not. If the hallucinations are not frightening and the person with Parkinson’s is aware that they are not real, they may choose to live with this side effect.
If you experience hallucinations or delusions, it is important that you tell your caregivers and your doctor. This will allow them to understand what you are going through and support you. Your doctor will check for other possible causes of these symptoms. Such things as an imbalance of chemicals in your blood, improper kidney, liver, or lung function, and certain infections could cause these mental disturbances. Other medications you may be using, including over-the-counter meds, could also be responsible. Make sure you tell your doctor about all medications, including herbal therapies, you are taking. If no other causes for the hallucinations or delusions are found, your doctor may choose to make adjustments your PD medications.
Unfortunately, in the end stages of her disease Mom experienced hallucinations, in particular visual ones. Through trial and error, we figured out that they were mostly a side effect of a drug she took for her dyskinesia (amantadine). When Mom first started having hallucinations, we would reassure her that what she was seeing wasn’t real. That helped calm her down initially; however, as they worsened and she became frightened by them, we decided to adjust her medications. It was a delicate balance trying to keep her dyskinesia to a minimum while preventing hallucinations. Reducing (not eliminating) the meds she took for dyskinesia stopped the majority of her hallucinations until she passed.
Some people may not be able to tolerate changes in their PD medications without increasing their symptoms. In these cases it may be necessary to treat the mental disturbances with antipsychotic drugs. Unfortunately, some of these can worsen PD symptoms. There are alternatives, though, and your doctor will be able to help you find them if needed.