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Personal Story about Parkinson’s Disease

by Guest Blogger
written 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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What to do with the elimination of Medigap Plans C & F
Conditions & Treatments

The Parkinson’s Disease Refrain: Do You See What I See?

by Guest Blogger
written by Guest Blogger

Mobile dating apps aren’t just for millennials. Ricky N., 78, met his future wife Glynda G., 71, online more than two years ago. His diagnosis of Parkinson’s disease never deterred her from their relationship, and themotor symptoms that are characteristic of Parkinson’s disease did not stop them from enjoying suburban Nashville or engaging in activities they enjoy.

Some of the Parkinson’s symptoms Ricky experienced were more visible than others. His vocal range changed, becoming deeper, but that did not prevent him from singing in choruses at the local community center and with his local Parkinson’s disease organization. In addition, in certain situations, he would develop a tremor in his right hand, arm, and leg. Thankfully, the Parkinson’s medications typically prescribed to target these motor symptoms helped control his symptoms for many years.

Experiencing Hallucinations and Delusions

With his motor symptoms under control, Ricky and Glynda were not prepared for the onset of non-motor symptoms that followed.Beginning a little more than a decade after his Parkinson’s diagnosis, Ricky started to experience illusions, perceiving objects differently from what they actually are. He would see things he believed were fleeting shadows against the curtain blinds and wonder if a person was about to enter the room, but no one ever did. Later, he would also begin to experience hallucinations, which is seeing, hearing, or experiencing things that others do not. Sometimes, he would feel the sensation of a mouse brushing against his legs while he was in bed. He would “know” it was there but could not see it.

To convince Ricky that the mouse wasn’t there, Glynda once left a piece of cheese at the edge of the bed. She hoped that when Ricky saw the cheese in the morning, he might realize the mouse was not real. Yet when he saw the cheese, he still remained fixated on the idea that it might be there, anyway. This experience of believing something that is not true is called a delusion, and it was challenging for Ricky and Glynda to understand why Ricky truly believed in the presence of a mouse that was not there.

Parkinson’s disease Psychosis

Even though most people know Parkinson’s disease as a movement disorder, around 50 percent of people with Parkinson’s may experience hallucinations and delusions over the course of their disease. These, along with other non-motor symptoms, can be more troublesome than motor symptoms, in terms of quality of life. Despite the onset of hallucinations and delusions associated with Parkinson’s, only 10-20 percent of those experiencing these non-motor symptoms proactively report them to their health care providers. According to a recent survey conducted by the Parkinson and Movement Disorder Alliance (PMDA), care partners are about two times more likely to report hallucinations and four times more likely to report delusions than people with Parkinson’s.

Managing the non-motor symptoms

Upon sharing Ricky’s symptoms with his neurologist, Ricky was prescribed NUPLAZID® (pimavanserin) in early 2018 for the treatment of hallucinations and delusions associated with Parkinson’s disease psychosis. After a few weeks, Ricky realized that he wasn’t feeling concerned about mice anymore. While he still sees shadows in the early evening hours, he knows they are not real and is not bothered by seeing something that is not there. Both Ricky and Glynda feel that NUPLAZID is “making a difference” and are happy with Ricky’s response to the medication. It’s important to remember that everyone responds to medications differently, so it may take some time for NUPLAZID to start working. Not everyone will respond to NUPLAZID.

Ricky is now more knowledgeable about his symptoms of Parkinson’s disease psychosis, and working with his doctor found a way to manage these non-motor symptoms and a treatment plan that is right for him. If you believe your loved one is experiencing hallucinations or delusions, talk to their neurologist and learn more at MoretoParkinsons.com.

Talk to your doctor to find out if NUPLAZID is right for you.

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Conditions & Treatments

Surprised by Symptoms: Parkinson’s Disease is More than Movement

by Guest Blogger
written by Guest Blogger

For the nearly 1 million Americans who live with Parkinson’s disease, experiencing and learning to adapt to lifestyle changes is a major aspect of coping with the disease. While they and their care partners may anticipate difficulties with movement, including symptoms such as tremors and stiffness, many are unprepared for non-motor symptoms that may also accompany a Parkinson’s diagnosis.

To learn more about how these non-motor symptoms affect the lives of those living with and caring for a person with Parkinson’s, a non-profit organization called the Parkinson & Movement Disorder Alliance (PMDAlliance) surveyed more than 650 people with Parkinson’s and their care partners.

Here are some findings and insights from the survey:

Non-motor symptoms of Parkinson’s impact most people with the disease.

Of those surveyed, more than 90% reported having experienced non-motor symptoms. These symptoms come in a number of forms, including:

  • Sleep problems or excessive tiredness (84%)
  • Cognitive challenges (75%)
  • Anxiety (65%)
  • Depression (55%)
  • Hallucinations (41%)
  • Delusions (24%)
  • Other, including constipation, apathy, nightmares, anger, and mood swings (14%)

 

Of those who experienced, or reported that their loved one experienced, non-movement symptoms,

84 percent felt that these symptoms had a negative impact on quality of life, with about half rating them as either more or much more challenging to live with than movement symptoms.

In response to a question about their Parkinson’s experience, one care partner said, “I wish [other people] knew that Parkinson’s looks different in different people. My spouse’s motor symptoms are fairly well controlled, but his REM sleep disorder and dementia have made our lives incredibly challenging and exhausting.”

When it comes to Parkinson’s, daily living is impacted by hard-to-see symptoms.

Parkinson’s disease changes how patients and their care partners think about the future and cope with day-to-day living. When asked how non-movement symptoms impacted their daily life, those surveyed reported at least some negative impact on the ability to:

  • Sleep (84%)
  • Plan for future events (76%)
  • Socialize with friends and family (71%)
  • Make plans with family or friends (70%)
  • Be intimate with their partner (68%)
  • Complete household chores such as cooking/cleaning (68%)
  • Run errands (67%)

 

When people with Parkinson’s experience non-movement symptoms, care partners are impacted, too. In fact, psychosis symptoms in patients with Parkinson’s are a strong predictor of increased care partner burden, and those with hallucinations have a 2.5-fold greater risk for nursing home admission.

Reporting symptoms is crucial in navigating life with Parkinson’s disease.

Even though non-movement symptoms are common, they are rarely reported. While approximately half of patients may experience hallucinations or delusions associated with Parkinson’s over the course of their disease, only 10-20 percent of patients and care partners spontaneously report these symptoms to their doctors.

It’s important to report all symptoms to a doctor (usually a neurologist or a movement disorder specialist), to determine the right treatment plan for both motor and non-movement symptoms of Parkinson’s.

“Those with Parkinson’s and their families are not alone. Talking to your doctor is just the start of getting support and treatment,” says Sarah Jones, CEO of PMDAlliance. “We urge the entire Parkinson’s community to continue initiating conversations about symptoms, especially the non-movement ones that greatly impact day-to-day living.”

This survey was sponsored by ACADIA Pharmaceuticals Inc. To learn more about the onset and impact of Parkinson’s disease psychosis, a non-motor symptom of Parkinson’s, or to receive a tool to assist you in talking with your physician and loved ones, visit PMDAlliance.org and MoretoParkinsons.com.

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Parkinson’s disease psychosis: Understanding Hallucinations and Delusions
Conditions & Treatments

Parkinson’s disease psychosis: Understanding Hallucinations and Delusions

by Jeff Dailey
written by Jeff Dailey

Parkinson’s disease psychosis can occur in more than half of all patients over the lifetime course of living with Parkinson’s disease. But many patients and families are surprised when non-motor symptoms, including hallucinations, often visual, or paranoid delusions occur. Loved ones and those charged with caring for the Parkinson’s disease patient need to be on the lookout for hallucinations or delusions because they can be managed under the care of a physician. Parkinson’s disease psychosis: Understanding Hallucinations and Delusions
Seeing What Isn’t There
With Parkinson’s disease psychosis, visual hallucinations are the most common. For example, many patients reporting seeing a fleeting image out of the corner of the eye that is not there, or they may see groups of people or animals. The hallucinations may look very real or appear black and white, fuzzy, or even cartoon-like. The person experiencing psychosis may speak to them or even approach them, but then find they suddenly disappear.
As hallucinations occur more frequently, what once might have been disregarded or even entertaining can quickly turn disturbing and bothersome, and the patients’ behavior may change.
Diane S., whose husband has Parkinson’s disease psychosis shares that, “He started seeing black cats all over the house that were not really there or he reported seeing groups of people in the living room, particularly at night. A man he dubbed “Big Boy” slept in our bed. What was scary is that my husband would try to confront “Big Boy” physically.”
Delusions and their Impact
With Parkinson’s disease psychosis, delusions are usually paranoid in nature. For example, a patient might think that someone (often a spouse) is stealing their belongings or trying to access his bank account illegally. Or, a husband may be irrationally convinced that his wife is cheating on him after 45 years of marriage.
Diane says, “I try to have a sense of humor about Jay’s beliefs, but sometimes it can be hard to handle. In order to look after Jay, I’ve dramatically reduced the time I spend maintaining my therapy practice and I spend much less time on activities I enjoy like gardening, yoga, and playing the cello.”
Tell Your Doctor
If your loved one living with Parkinson’s disease is experiencing hallucinations or delusions, it’s important to share those symptoms with their doctor. Parkinson’s disease psychosis remains underreported, possibly because patients and families are embarrassed or don’t realize the symptoms are associated with Parkinson’s. An open dialogue about all symptoms will help the doctor develop a management strategy for the patient.
For more information about caring for someone with advanced Parkinson’s disease, visit the CareMAP online resource, created by the National Parkinson Foundation at caremap.parkinson.org.
By: Dr. David Kreitzman, M.D., Director, Parkinson’s Disease & Movement Disorders Center of Long Island Director, Parkinson’s Disease Specialty Care Center, St. Charles Hospital

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