When Reality Feels Different: Navigating Delusions and Hallucinations With Parkinson's
Most people know Parkinson’s disease by its most visible signs — the tremors, the shuffling walk, the slowness of movement. What surprises many patients and families is what can come later: seeing things that aren’t there, believing things that aren’t true, and navigating a reality that no longer lines up with the people around you.
About 50% of people with Parkinson’s report experiencing hallucinations or delusions, and that number climbs as the disease progresses. These symptoms — known collectively as Parkinson’s disease psychosis — are more common than most people realize, and more isolating than most people admit.
As Mighty contributor Charles Mickles, who lives with Parkinson’s, wrote: “So many things are affected that many do not ever see. Even when you can’t see the ‘shakes,’ there is a battle raging in our body.” That invisible battle extends well beyond movement — and hallucinations and delusions are often the part nobody talks about.
What Patients May Experience
Hallucinations in Parkinson’s often begin subtly — a fleeting image in the corner of the eye, like a cat or a shadow that vanishes when you turn to look. Some patients experience “presence hallucinations,” a strong feeling that someone is standing just behind them, even when no one is there.
For some, these experiences become woven into daily life. Mighty contributor Emma Stubbs, who lives with Parkinson’s, described telling her children what the road ahead might look like in her article: “Mummy’s going to get progressively slower at moving, talking, thinking. Falling might be an issue and periodic bouts of choking, falling, and hallucinations. All whilst she’s dancing a jig to no music.” Her matter-of-fact honesty captures something important: these are neurological events, not something to be ashamed of.
Delusions — fixed false beliefs that don’t shift with reassurance — can be harder to navigate. Unlike hallucinations, delusions are more bothersome but less common, and logic simply does not penetrate them. A person may believe their partner is unfaithful, or that someone is plotting against them. And yet when these symptoms occur, a person’s other mental abilities are often still fully intact — they may still be able to balance a checkbook and recall everything they’re supposed to know. That contrast can make the experience deeply disorienting for everyone involved.
What Caregivers Are Living With
Hallucinations and delusions are widely considered the aspects of Parkinson’s that make at-home care most difficult — more than movement difficulties or any other part of the disease, caregivers find them the hardest to cope with.
Research bears out how isolating this experience can be for caregiving spouses: many are reluctant to share what they’re going through, sometimes due to the nature of delusion content, and sometimes out of a desire to protect their loved one’s image. Caregivers frequently become deeply knowledgeable about their loved one’s condition — but often learn entirely on their own.
What Can Help
First: these symptoms are not a reflection of who your loved one is, and you are not alone.
Management strategies include reporting symptoms early to a doctor, considering medication adjustments, and supportive approaches like reassurance, keeping spaces well-lit, and validating your loved one’s experiences rather than arguing against what they perceive as real.
Keeping a detailed record of when hallucinations occur, their duration, and any potential triggers gives neurologists valuable information and helps track changes over time. And reaching out — whether to a support group, a social worker, or the Parkinson’s community here on The Mighty — can ease the weight that so many carry silently.
Whether you’re the one experiencing a reality that feels different, or the one standing beside someone who is — your experience matters, your exhaustion is valid, and help is available.