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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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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
Caregiver’s Asylum from Parkinson’s Psychosis Caregiver’s Asylum from Parkinson’s Psychosis Caregiver’s Asylum from Parkinson’s Psychosis Caregiver’s Asylum from Parkinson’s Psychosis Caregiver’s Asylum from Parkinson’s Psychosis Caregiver’s Asylum from Parkinson’s Psychosis

Caregiver’s Asylum from Parkinson’s Psychosis

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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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