A Mind Guide To Parkinson’s Disease

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A Mind Guide to Parkinson’s Disease

1Psychosis can be a frightening word that many peopleassociate with movies or the news, or simply don’tunderstand. But what does it really mean? In Parkinson’sdisease (PD), what your doctor calls psychosis usuallystarts with mild symptoms, but these can have abig impact on quality of life. This book explains whatParkinson’s psychosis is, why people with Parkinson’smight experience symptoms of psychosis, and how totreat it and cope with it.The information, tips, and stories included here will provide answers, helpyou organize thoughts and questions for your medical team, and remindyou that you are not alone on this Parkinson’s journey. Some of the tips inthis book are for caregivers of someone experiencing Parkinson’s diseasepsychosis, but people with Parkinson’s will also learn a great deal aboutthe condition from those suggestions for dealing with it.

2ContentsAboutParkinson’sDisease5What Is PDPsychosis?7Talkingabout PD& Psychosis23Tips forCaregivers25

3Causes13Treatments17Glossary 32Index 36Summary31

AcknowledgementsThis book was written and reviewed by:Linda Minton, MPHKate Perepezko, MSPHGregory Pontone, MDThis book has been made possible through thegenerous donations of thousands of individualsaffected by Parkinson’s and a grant fromDesign: Ultravirgo

5chapter oneAbout Parkinson’sDiseaseIf you’re reading this book, you are probably alreadyfamiliar with Parkinson’s disease, but here are some basics:Parkinson’s is a progressive neurodegenerative disorderthat affects about one million people in the United Statesand 10 million people worldwide. It is called a movementdisorder because of the tremors, slow movements, stiffnessand muscle cramping it can cause. But its symptoms arediverse and usually develop slowly over time.Parkinson’s disease is not diagnosed with a test or a scan; instead it isdiagnosed by your doctor, who asks you questions about your health andmedical history and observes your movement. Your doctor may want youto have some test or imaging; some, like an MRI, can help rule out otherconditions, while others, like DaTScan, may help confirm a Parkinson’sdiagnosis if there is uncertainty. The goal of treatment is to help youmanage your symptoms. Good symptom management can help youto stay healthy, exercise and keep yourself in the best possible shape.Although at this time there is no way to correct the brain changes thatcause Parkinson’s, we know that exercise can help you maintain your abilityto fight the disease and that staying healthy can reduce setbacks that makePD progress faster. Great care is key to living your best life with Parkinson’s.

6psychosisLack of dopamine in people with Parkinson’s was first described in the1960s. Dopamine is a neurotransmitter, or chemical messenger, one ofseveral chemicals your brain cells use to send signals to one another.Soon after, dopamine-replacement therapy using levodopa became –and remains – the gold standard treatment. However, we know that thedopamine system is not the only one affected by Parkinson’s. The diseaseprocess also disrupts other brain networks, including those linked to mood,behavior and thinking (cognition). You might also hear that Parkinson’s islinked to a protein in the human brain called alpha-synuclein. Researcherscontinue to study how cells and brain networks are affected in Parkinson’sto improve our understanding of the disease and potential for treatments.You and your family may have questions or fears about Parkinson’s andgenetics. While there are several genetic mutations that can increase yourrisk, for the vast majority of people, Parkinson’s is not inherited. There isno test that can accurately predict who will develop Parkinson’s. Extensivegene and biomarker research is underway to uncover the possible factorsinvolved in – not necessarily causes of – disease development.What Does “Psychosis” Mean?The word “psychosis” has a long history, with roots in Latin and Greek.Across history, the meaning of the word has evolved, but from the 1800son it has been used as we understand it today: to refer to a break withreality. This break from reality can range from severe confusion(disordered thinking) to seeing things that aren’t there (hallucinations)to believing things that are not true (delusions). Psychosis in otherconditions, such as schizophrenia, can include many symptoms thatare rare in people with Parkinson’s.

7chapter twoWhat IsPD Psychosis?When most people think of Parkinson’s, they think oftremors, stiffness or slowness of movement. Manypeople are unaware that PD can affect thinking, moodand behavior, among other changes. For people withParkinson’s and their caregivers, living with the motorsymptoms can be hard, but behavior changes can be evenmore frustrating and challenging, and these changes canhave a huge impact on quality of life. No two people withParkinson’s are the same, and most people do not developevery symptom. This can be particularly frightening if youdon’t know what is happening, so it is important to be ableto recognize the symptoms if they happen to you or a lovedone. Healthcare providers usually refer to these symptomsas “Parkinson’s disease-associated psychosis.”

8psychosisHow Common is Parkinson’s disease Psychosis?Between 20-40% of people with Parkinson’s report the experience ofhallucinations or delusions. When followed as the disease progresses overthe years, this number increases. The increase does not mean that thehallucinations are persistent across the majority of patients. However, itis important to note that these statistics sometimes include “delirium,”in which the symptoms are temporary due to medication that needs tobe adjusted or infection that needs to be treated, and “isolated minorsymptoms” or “minor hallucinations,” including illusions, where insteadof seeing things that are not there (hallucinations), people misinterpretthings that are really there. These are the most common types ofpsychosis in people with PD, with different studies placing the occurrencebetween 25-70% of people with Parkinson’s. Typically, if the person withPD only has these minor hallucinations, their doctor will not prescribe anantipsychotic medication, though more significant psychosis that requiresmedication may develop over time. In one study, 10% of those with minorhallucinations had their symptoms resolved within a few years, while52% saw their symptoms remain the same and 38% saw their psychosissymptoms get worse.When looking at these statistics, it is important to remember that fora long time, Parkinson’s clinicians and researchers did not include minorhallucinations when studying Parkinson’s disease psychosis (PDP), but inmost studies that is no longer the case. The criteria being used now doesnot require significant impairment or distress as a result of the psychoticsymptoms and means that our estimation of the prevalence of psychosishas increased. Studies using the new criteria exclude delirium and rule outthose who have their diagnosis changed from PD to Lewy Body dementia(LBD), but it is likely that some study participants fall into these categoriesand are included in studies by mistake.As we study PDP more with this new definition, we will likely see betterestimates of how common these symptoms are, and hopefully will developa better way to distinguish between psychosis that requires antipsychoticmedication versus milder psychosis that can be monitored by clinicalspecialists without a prescription of an antipsychotic medication.We recommend that people with Parkinson’s not use a single percentageto represent the prevalence of hallucinations and Parkinson’s diseasepsychosis. Parkinson’s is a complex disease and as it progresses thepercentages and risk of symptoms will change.

what is PD psychosis?9It is important to report any hallucinations or delusions to your medicalteam, even if they are not bothersome. For more information, call theParkinson’s Foundation Helpline 1.800.4PD.INFO (1-800-473-4636)Understanding sychosisMany people are not aware that hallucinations are a possibility in theParkinson’s progression, so the surprise and fear associated with thesenew symptoms can be magnified.Not everyone will get Parkinson’s disease-associated psychosis. Like otheraspects of PD, there is great variability in when and if people developpsychosis. Some people experience symptoms as early as three yearsafter diagnosis; others develop symptoms after as long as 25 years livingwith Parkinson’s; and others never experience psychosis symptoms at all.Awareness and understanding of the cause(s) and symptoms can helpwith early and appropriate diagnosis and treatment.Psychosis can be defined in two ways: A symptom of a medical condition characterizedby a loss of contact with reality; or A psychiatric disorder that produces psychotic symptoms.Parkinson’s disease psychosis is generally the former: in the majority of PDcases, psychosis occurs as a side effect of the disease and medications.Sometimes, in mid- to late-stage Parkinson’s, hallucinations, illusions anddelusions may appear as neurologists try to find the right combination ofmedications to reduce the impact of PD motor symptoms. These shouldnot immediately be considered a new psychiatric illness. Instead, talkto your doctor about the potential causes of and treatments for thesesymptoms in the context of Parkinson’s disease. Some questions to thinkabout to prepare for a conversation with your doctor are on page 19.NOTEHallucinations and delusions can be caused by medications andby the same brain changes that cause Parkinson’s disease itself.(Turn to Chapter 3, “Causes,” on page 13 for more information.)It is important to keep your medical team informed about anysymptoms, so they can be effectively managed.

10 psychosisWhat Are Hallucinations?The term “hallucination” describes something you see, hear, smell,taste or feel that is not actually there. Hallucinations are not dreams ornightmares. They happen when you are awake and can occur at any timeof day or night.Hallucinations are best understood as deceptions – tricks the brain playson the body’s five senses. Hallucinations in people with Parkinson’s aregenerally visual. Common hallucinations include seeing people or animals.While the visions appear real to the person experiencing them, they cannotbe seen by anyone else. These “visitors” are generally out of place andmight cause concern, though they are not always distressing.Auditory hallucinations – when you hear sounds or voices that aren’t real –are less common in people with Parkinson’s. Other kinds of hallucinationscan be felt (tactile), smelled (olfactory) or tasted (gustatory), but they areeven less common in Parkinson’s disease-associated psychosis.When hallucinations first appear in people with Parkinson’s, you mightrecognize that what you are seeing (or hearing, etc.) isn’t real. This is called“retaining insight.” Insight allows you to understand that the hallucinationsare a symptom of Parkinson’s rather than a new reality. You might be ableto create coping mechanisms to help you through the experience. Havinginsight is common in several psychiatric conditions, though it is morecommon in illusions than in hallucinations. For example:Eleanor was sitting with her friend Margaret one morning at herhouse. She noticed a dog walking around her couch, sniffing theground. Eleanor asked Margaret when she got the dog. Margaretreplied that she didn’t own a dog and that there wasn’t a dog in theroom. Eleanor realized she must be experiencing what her doctor hadwarned her about – a hallucination. Margaret asked Eleanor if shehad been feeling well. Eleanor said that her doctor had just increasedher Parkinson’s medications and that she had noticed some visualchanges recently. She decided to call her doctor that afternoon toinform him of the hallucination.Any hallucination, whether or not it is bothersome, should be reported tocaregivers and the medical team. If you can discuss or explain what you aregoing through, it can help you receive prompt and appropriate treatment.It may also reduce conflict with caregivers and family members.

what is PD psychosis? 11When people lose insight they begin to believe that the hallucinations arereal. When this happens, the person with Parkinson’s might try to interactwith the imaginary people or objects. This may cause behavior changesin the person with Parkinson’s, including agitation or aggression. Hallucinations without insight pose a greater risk of harm to oneself and thosearound you, even if the hallucinations are not distressing. For example:Christopher would see parades of beautiful wooden puppets marchingin front of him. He enjoyed watching the parades and would watchthem for hours. One day as the parade was passing in front of him,he tried to step over it, not wanting to interfere with the marchingpuppets. Unfortunately, he lost his balance while trying to avoidstepping on the puppets and fell, breaking his hip in the process.He spoke to his brother, Patrick, about this accident. Patrick toldhim they should tell the doctor about the hallucinations.What Are Illusions?Illusions are another sensory misperception. Instead of seeing thingsthat are not there (hallucinations), people with illusions misinterpret realexternal stimuli. In other words, they see or hear something wrong, such asmistaking hats on a coat rack for heads, or hearing a chant instead of theair conditioner. For example:Drew noticed his wife, Nora, speaking in whispered tones andgesticulating to some hanging plants in their home. When he askedwith whom she was speaking, Nora replied that she was talking tothe green heads. Drew advised Nora that there were no heads, onlyhanging plants that could not talk back to her. She accepted thiswillingly and moved on with her day. However, later on she continuedspeaking to the hanging plants.Illusions can also be experienced as a “sense of presence” – when you havethe feeling of a person or animal being nearby when there is no one around– or as “passage hallucinations” – when an unformed object moves in yourperipheral vision.tipIllusions and hallucinations are more likely to occur in low light/lowvisibility situations. To reduce risk, increase lighting, particularly indark areas such as hallways.

12 psychosisWhat Are Delusions?Delusions are false, fixed, idiosyncratic beliefs. They are not deliberate,cannot be controlled and are very real to the person with Parkinson’s.Delusions are ongoing and can be subtle. They often begin as generalizedconfusion at night and progress from there.You may never experience delusions – fewer than 10% of people withParkinson’s do – but knowing they are a possibility can help in futureplanning. In PD-associated psychosis, delusions occur less frequentlythan hallucinations and are generally more difficult to treat. They can beassociated with medications as well as a general deterioration in condition.There are three general categories of delusions that come up in Parkinson’sdisease psychosis:– Jealous (when you believe your significant other is unfaithful)– Persecutory (when you believe harm is occurring or going to occur)– Somatic (realted to bodily functioning or sensations,or physical appearance)Paranoia – when you become suspicious – is a common type of delusion.Paranoia often involves accusations of marital infidelity or fear of beingpoisoned by medications or food.NOTEDelusional thoughts are not deliberate. They cannot be controlled,and the person with Parkinson’s cannot be talked out of believing them.

13chapter threeCausesParkinson’s disease-associated psychosis, like Parkinson’sdisease itself, is caused by chemical changes in thebrain. Dopamine is a neurotransmitter that is primarilyresponsible for controlling movement, emotional responsesand the ability to feel pleasure and pain. In people withParkinson’s, the cells that make dopamine can be impairedor die. Without these cells, there is less available dopamine.With lower levels of dopamine, you experience the motorsymptoms of PD.On the other hand, abnormally high levels of dopaminecause hallucinations and delusions. This increase indopamine is usually related to the medications prescribedto relieve motor symptoms. It can be a challengingbalancing act to provide enough dopamine to controlthe motor symptoms of PD without providing too muchdopamine so that the person with Parkinson’s begins tohave hallucinations and delusions.

14 psychosisThere are three main contributors to the developmentof Parkinson’s disease-associated psychosis:1. MEDICATION The most common trigger of PD psychosis is medication. The treatment of PD includes drug therapy to regulate dopaminelevels in the brain. As you have likely experienced, finding the perfectmedication regimen can be a painstaking process, and it requires adelicate balance. The treatment objective is to minimize symptoms andmaximize quality of life. However, adjusting neurotransmitter levelschanges the chemical balance of the brain, so people with Parkinson’sbecome at-risk for emotional and behavioral changes. Different types of medications can lead to these disruptions:1) Medications that increase the level of available dopamine. This includesdopamine replacement therapies, such as levodopa converted todopamine in the brain (e.g., Sinemet) and dopamine agonists. 2) Medications that reduce the level of the neurotransmitteracetylcholine, e.g., anticholinergics, which are typically themain ingredient in over-the-counter sleep aids and manyallergy medications.2. D EMENTIA To many people, one of the most worrisome aspects ofaging and neurological disease is the looming risk of cognitive change,when thinking slows, memory fails and it gets harder to make the rightdecisions. Over time, some people progress from normal cognition tomild cognitive impairment – when thinking changes start to have animpact on your life – and then to dementia. Dementia is not a specificdisease; rather, the term describes a group of symptoms associatedwith a decline in memory and thinking. It is commonly associated withcertain medical conditions, such as Alzheimer’s disease, but people withParkinson’s can also develop dementia. Parkinson’s disease dementiaaffects attention, recent memory, executive function and visual andspatial relations. It usually develops years after the PD diagnosis. Having PD dementia does not mean you also have Alzheimer’s.Similarly, when psychosis and dementia occur together and presentearly in the illness (before or within one year of noticing motorsymptoms of PD), an alternate diagnosis of Lewy Body dementiashould be considered. The brain chemistry is similar to Parkinson’sdisease dementia, but treatment may be different. A consultation withyour doctor will help to determine if you have dementia, and what typeof dementia you have.

causeS 15tipFor more information on cognitive issues, including dementia, order thebook Cognition: A Mind Guide to Parkinson’s by calling our Helpline at1-800-4PD-INFO (473-4636) or online at Parkinson.org/books.3. DELIRIUM Delirium is a reversible medical condition that generallycomes on and resolves quickly with treatment. It involves a stateof altered alertness, disorganized thinking, unusual behavior and/orhallucinations. Because of these widespread symptoms, deliriumcan be hard to differentiate from other psychiatric conditions.Common causes include infections (e.g., urinary tract infection),heart or liver disease, chemical imbalance and a host of othercommon maladies. In addition to medical conditions and changes,many commonly used medications and substances can cause delirium(e.g., alcohol, anticholinergics like Benadryl, opiate pain medications,benzodiazepines like Xanax or non-steroidal anti-inflammatorydrugs/NSAIDs like aspirin). Something as simple as taking an allergymedication may trigger a change in mental status. Aging and disease progression

and behavior, among other changes. For people with Parkinson’s and their caregivers, living with the motor symptoms can be hard, but behavior changes can be even more frustrating and challenging, and these changes can have a huge impact on quality of life. No two people with Parkinson’s are the same, and most people do not develop every .

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