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Personal Story about Parkinson’s Disease

by Guest Blogger

Seeing What is Not There

Is it possible to see what is not there? For people with Parkinson’s disease, the answer may be yes! It is estimated that nearly half of all people with Parkinson’s disease may experience hallucinations, or seeing things that others do not, or delusions, which are fixed, false beliefs over the course of their disease. Over time, it can be hard for some to understand what is real and what is not.

Dan Sees the World and More

Dan M., 61, spent his life serving his community. He was stationed all over the United States and in Germany as a U.S. Air Force Senior Master Sergeant, and upon retirement served as a city police commissioner, graduate school professor, and, eventually, director of a highly regarded retirement community in Medford, OR. Here, he helped implement programming for those with movement disorders to improve their mobility. Little did he know, at the time, that he would soon be diagnosed with a movement disorder himself.

Around five years ago, Dan began to experience symptoms that made day-to-day tasks more challenging. Among other things, he experienced rigidity, problems with writing and balance, loss of speech, anxiety attacks, and memory loss. His symptoms sent him from specialist to specialist, until finally a neurologist identified them as motor and non-motor symptoms of Parkinson’s disease. The diagnosis surprised Dan and his wife.

Dan’s movement disorder specialist prescribed a common Parkinson’s disease medication, which he was excited to find improved his mobility. For about 18 months Dan enjoyed fewer movement related challenges, but eventually started to experience new symptoms that neither he nor his wife had anticipated.

Dan started to have paranoid thoughts about trusted neighbors and friends. Soon after, he started to see small rodents that no one else could see and what he believed to be ghosts. A news story about a sinkhole triggered Dan to believe that the world was ending and that he had to save everyone from an impending doomsday. He even accused his loving and supportive wife of being unfaithful without any evidence whatsoever. Dan could not control his fears and those close to him became worried. Though Dan noticed they were troubled by his behavior, he could not understand how his behavior was out of the ordinary.

Managing Hallucinations and Delusions

After six months of experiencing these troubling symptoms, Dan brought them to the attention of his movement disorder specialist, who immediately recognized that the small rodents he was seeing were hallucinations. These hallucinations coupled with false beliefs (delusions) were non-motor symptoms associated with Parkinson’s disease. The onset of such symptoms is common in Parkinson’s, but only 10-20 percent of patients volunteer this information to their doctor.

Dan and his doctor worked together to find a treatment plan that was right for him. Dan reports that this approach has helped, and he realizes that his beliefs were not in-line with the normal, mentally-healthy thinking he had always enjoyed. Dan also benefits from on-going psychiatric and counseling appointments to help manage anxiety and depression, which are additional non-motor symptoms commonly seen in Parkinson’s.

Dan and his wife hope to help others understand non-motor symptoms of Parkinson’s disease and how to identify them. They are active in their local Parkinson’s support group, and have found comfort knowing their story may help others who are going through similar challenges.

For more information about Parkinson’s disease psychosis, a non-motor symptom of Parkinson’s disease, visit MoretoParkinsons.com.

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