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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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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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Caregiver’s Asylum from Parkinson’s Psychosis
Caregiving

Caregiver’s Asylum from Parkinson’s Psychosis

by Kimberly Johnson
written by Kimberly Johnson

I have spent the majority of my life surrounded by Parkinson’s disease, which affects over 1 million Americans. Both of my parents passed away from complications related to the disease and my sister was recently diagnosed as well. Beyond the debilitating and recognizable motor symptoms (such as freezing), my loved ones also developed Parkinson’s disease psychosis (PDP), a common aspect of the disease characterized by hallucinations and delusions, and affecting more than half of all people with Parkinson’s over the course of the disease. Caregiver’s Asylum from Parkinson’s Psychosis
PDP is a common, but still very misunderstood, especially for a caregiver. I know firsthand how emotional and frustrating it can be. I’ve since learned that research has shown there is a strong correlation between the onset of psychosis and increased stress by those who care for PD psychosis sufferers.
My father, John, was the production manager on the control panels for the Gemini, Mercury and Apollo Space missions. It made little sense to me when an intelligent man, like my father, said he saw old colleagues from the space program gathered at our kitchen table. It was as if he was re-living an event from over twenty years prior with people who weren’t really in the room with him. As a result of my parents’ illnesses, I elected to move back home to New Jersey to care for them and gave up a dream career opportunity in Nashville. I didn’t regret my decision, but it did change my future path. Caring for my parents was challenging and there were times I felt alone and unsure how to cope. I often second-guessed myself, taking on guilt and regret over the many decisions I had to make on my parent’s behalf.
More recently, my sister, Judy, was diagnosed with Parkinson’s disease in 2014. The disease forced Judy to end her career as an English teacher and social worker, move out of her home, and, like our father, she began to experience PDP. Judy frequently sees snakes on her hand, men in the trees, babies upstairs, dogs at the door, or even barbershop quartets in walls. One day she ran out of the house after a car because she thought she saw her daughter, whom she had been missing, in the front seat. But, like my dad’s episodes, her daughter wasn’t really there. Additionally, Judy has been struggling with depression and as her sister it is very distressing to see your loved one so down. My dear sister had a great sense of humor, but today her delightful personality is overshadowed by hallucinations.
Caring for a loved one can be overwhelming, which is why it’s important to have an outlet to find a balance. For me, that has been raising awareness for PDP and becoming active in the Parkinson’s disease community to help others who may be in the same situation realize that they are not alone.
My experience with PDP gave me the purpose and passion to make a difference. In January of 2016 and 2017, I performed a song I wrote at the Light of Day Winterfest, a non-profit to fight Parkinson’s disease, ALS and related complications. As a songwriter, there is nothing like performing on stage in front of an audience. There is something very special about connecting with your audience – in this case, caregivers or patients – about something you can all relate to.
In addition, one of the most rewarding experiences of my life was the opportunity to testify about the impact of Parkinson’s disease psychosis on me and my family at the FDA hearing in DC to evaluate the first treatment for hallucinations and delusions associated with Parkinson’s disease. It was thrilling when the FDA approved the medication for the treatment of hallucinations and delusions just a few weeks later in May 2016. I felt like my participation at that meeting benefitted the entire Parkinson’s disease community.
At its most basic level, advocacy means to help or assist. As I shared my story, I felt comfort and camaraderie among the other caregivers and advocates I’ve met along the way. Through raising awareness of PDP, I am hopeful that patients with PD, like my sister Judy, will have the opportunity to access better treatments that were not available to our parent’s generations ago.
To learn more about PDP and how you can become an advocate, visit National Parkinson Foundation at caremap.parkinson.org.
By Mary Ann Conway
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Caregiver’s Asylum from Parkinson’s Psychosis

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Caregiving Tips for Parkinson’s disease Psychosis Patient
Conditions & Treatments

Caregiving Tips for Parkinson’s disease Psychosis Patient

by Jeff Dailey
written by Jeff Dailey

Parkinson’s disease psychosis can develop in over 50 percent of patients over the lifetime course of living with Parkinson’s disease and is characterized by hallucinations and delusions. The diagnosis is challenging for both patients and their caregivers, particularly if they don’t know that these non-motor symptoms can be associated with Parkinson’s disease. Caregiving Tips for Parkinson’s disease Psychosis Patient
Understanding Hallucinations and Delusions
Parkinsons2Hallucinations are false perceptions. A patient will see or hear or even feel something that really isn’t there. Delusions are irrational beliefs and patients cannot be convinced that their understanding is flawed.
Common characteristics of Parkinson’s disease psychosis include, typically, visual hallucinations, usually little children or little animals in the bedroom at night or even just outside the home, which bother the patients because they don’t belong there. They also have paranoia. Often times it’s paranoia of spousal infidelity where they believe the spouse is cheating on them or stealing from them.
At first, most patients may understand that what there are seeing or feeling isn’t real, but if the hallucinations and delusions are not treated promptly, they tend to increase in frequency and become much more bothersome, believable, and even frightening. When people living with Parkinson’s disease psychosis become more insistent and bothered about the hallucinations and delusions, this is the point where caregivers find themselves struggling to help their loved one and feeling overwhelmed themselves.
Caring for the Patient and Caring for the Caregiver
Caregivers often find they are giving up time with friends and family, their hobbies, and even their jobs because keeping their loved one content and safe becomes an overriding priority and time-consuming.
With Parkinson’s disease psychosis, we clearly recognize that patients have a burden when they are experiencing Parkinson’s disease psychosis, but the other side of that are the family members and caregivers. There is a large caregiver burden placed on people that are taking care of these patients. Because of disabilities associated with Parkinson’s disease, caregivers are often taking care of meals, bathing, and dressing these patients. When there’s the extra component of a psychosis and patients are accusing them of stealing from them or cheating on them, it becomes emotionally burdensome and very overwhelming.
To help manage the stress of caring for someone who is experiencing hallucinations and delusions, it is important for caregivers to seek out support from their personal network of family and friends, and consider finding Parkinson’s support groups in their area. The unfortunate reality is that the oftentimes the burden of managing someone with hallucinations and delusions becomes too great, and caregivers often make the difficult decision to transfer their loved one to a long term care facility, unless their symptoms are controlled by treatment.
Can Parkinson’s disease psychosis be treated?
If the hallucinations and delusions are infrequent, they may not require treatment beyond monitoring.
However, if they trouble the patient (and caregivers), the doctor may first try to reduce the Parkinson’s medications that address motor control to see if this alleviates symptoms. Although, a physician could prescribe an atypical antipsychotic these drugs are not approved by the Food and Drug Administration (FDA) for Parkinson’s disease psychosis, which means neither the safety or efficacy have been scientifically established for the psychotic symptoms of Parkinson’s Disease.
There is good news for patients and their families. The only treatment for Parkinson’s disease psychosis was just approved in late April 2016 by the U.S. Food and Drug Administration. Pimavanserin, to be called NUPLAZID, is approved for the treatment of hallucinations and delusions associated with Parkinson’s disease psychosis. Published data shows that the medicine reduces hallucinations and delusions, without worsening motor symptoms, which is important when managing Parkinson’s patients.
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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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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What is Parkinson’s Disease Psychosis
Conditions & Treatments

What is Parkinson’s Disease Psychosis

by Jeff Dailey
written by Jeff Dailey

 

Understanding a Very Common and Troubling Disorder, Parkinson’s Disease Psychosis

Over one million Americans live with Parkinson’s disease, which is a progressive movement disorder with well recognized symptoms often including tremors, rigidity and slowness of movement. However, what surprises many patients and their family is that over half of patients will also develop troubling non-motor symptoms, such as hallucinations and delusions. Parkinson’s Disease Psychosis
What is Parkinson’s disease Psychosis?

Parkinson's disease problems - health concepts word cloud illustration. Word collage concept.

Parkinson’s disease problems – health concepts word cloud illustration. Word collage concept.


Parkinson’s disease psychosis is characterized primarily by hallucinations, often visual but possibly also occurring when a person hears or senses something that isn’t really there, as well as delusions. A delusion is a belief or impression that is maintained by the person experiencing it, despite the belief being contradicted by what is generally accepted as true. These symptoms are challenging for the patients who experience the symptoms as well as for their caregivers.
Sadly, very few Parkinson’s patients (10-20%) actually report Parkinson’s disease psychosis symptoms to their doctor. This may be due to fear or embarrassment. In other cases, the condition goes undiagnosed because patients and their caregivers may not realize that psychotic symptoms are actually associated with Parkinson’s disease. When symptoms go unreported, physicians then have an incomplete understanding of how the disease is affecting his or her patient, which in turn leads lack of treatment.
It isn’t clear why Parkinson’s disease psychosis develops. Sometimes, psychosis is triggered by infections, typically urinary tract or upper respiratory infection or pneumonia, and certain medications. However, there is also some evidence that psychosis might be a spontaneously occurring complication as the brain disease progresses.
You Are Not Alone
If you are caring for someone with Parkinson’s disease Psychosis, you and your loved one are not alone. Open dialogue with a physician can help in developing an effective management plan. There are also Parkinson’s disease support groups across the country who can provide education and caregiver respite.
Notably, the only FDA-approved treatment for Parkinson’s disease psychosis was just approved April 29, 2016. Published data report that this new medication reduces hallucinations and delusions without worsening of motor symptoms, which is important when managing Parkinson’s disease patients.
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
Understanding Parkinson’s Disease Psychosis

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