• If you are the caregiver of someone with Parkinson’s disease (PD), a progressive neurodegenerative movement disorder that affects approximately one million Americans, then by now you are very familiar with the tell-tale motor signs of the disease, which include tremors, rigidity and slowness of movement. However, you may be surprised to learn that people living with Parkinson’s can also develop non-motor symptoms (those unrelated to physical movement) as they age and as the disease progresses. These symptoms should not be overlooked because they can, and must, be treated.

    Parkinson’s disease psychosis (PDP) is a particularly under-recognized non-motor disorder of perception and thought, which emerge as Parkinson’s Disease advances. It is a serious clinical complication which affects more than half of patients over the course of their illness.

    What is Parkinson’s disease Psychosis?

    PDP is characterized primarily by hallucinations (seeing, hearing or smelling things that aren’t really there), as well as delusions (false, irrational beliefs). Understandably, these symptoms impair the quality of life for the person experiencing them, and for the family and/or care-giver.

    Unfortunately, many patients will go undiagnosed if their physician doesn’t ask specifically about whether the psychotic symptoms are occurring especially if the patients and their families don’t volunteer such information to the treating physician. In fact, only a small portion (10-20 %) of Parkinson’s patients actually report PDP symptoms to their doctor. This may be due to fear or embarrassment. In other cases, PDP goes undiagnosed because patients and their caregivers may not realize that psychotic symptoms are actually associated with Parkinson’s disease.

    These unreported symptoms lead to a clinician having an incomplete understanding of how the disease is affecting his or her patient and may lead to lack of treatment. In older persons, several factors can trigger psychotic symptoms such as infections, typically urinary tract or upper respiratory infection or pneumonia, and certain medications. When infections have been ruled out and no newly added medication has been identified as causing the psychosis, then the most likely culprits are the Parkinson’s medications used to treat the motor symptoms. However, there is also some evidence that psychosis might be a spontaneously occurring complication as the brain disease progresses.

    Understanding Hallucinations and Delusions

    Hallucinations are false perceptions, or the inability to separate reality from imagination. The type and severity of hallucinations can vary patient to patient, but most commonly are visual. 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 PDP may speak to them or even approach them, but then find they suddenly disappear.

    While hallucinations start as mild and may even be “entertaining” to the patient, as they become more frequent and intense, they can also become quite disturbing and bothersome, and the patients’ behavior will change. For example, a person with PDP may refuse to sit in his or her favorite chair because a “creature” or another person is seemingly there already. While this may sound like a mild inconvenience, patients who goes to greater and greater lengths to avoid what they see will suffer a tangible decline in their quality of life.

    Auditory hallucinations (hearing things that are not there), tactile hallucinations (e.g., feeling abnormal sensations on the skin), olfactory hallucinations (e.g., smelling things that others don’t) and gustatory hallucinations (tastes without a stimulus) also occur but at a lower frequency.

    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 their bank account illegally. Or, a husband may be irrationally convinced that his wife is cheating on him after 45 years of marriage.

    Taking Care of the Patient While Taking Care of Yourself

    PDP is difficult for both patients and their caregivers, particularly because it is often impossible to convince people experiencing delusions that their beliefs are false or irrational. Caregivers may 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. To help manage the stress of caring for the PDP patient, it is important for caregivers to seek out support from their personal network and to find Parkinson’s support groups in their area. The unfortunate reality is that the oftentimes the burden of managing someone with PDP becomes too great, and caregivers often make the difficult decision to transfer their loved one to a long term care situation, unless their symptoms are controlled by treatment.

    Treating PDP

    Hallucinations usually require treatment but sometimes may not require treatment if the symptoms are very mild and not bothersome to the patient. However, they should be monitored and taken into account when treating Parkinson’s, generally. When the psychotic symptoms require treatment, the doctor’s first option is to reduce the Parkinson’s medications, and when these cannot be further reduced, the physician may prescribe an atypical antipsychotic such as quetiapine or clozapine, but these drugs have side effects that be intolerable or unsafe for some patients. Further, these antipsychotic drugs are not approved by the Food and Drug Administration (FDA) for PDP, which means neither their safety or efficacy have been scientifically established for the psychotic symptoms of Parkinson’s Disease.

    There is good news for patients and their families. A new treatment for PDP may soon be available. Pimavanserin is an investigational chemical entity that has completed Phase III clinical studies. Published data report that this new medication helps to diminish the impact of PDP symptoms and may have a lower risk of worsening motor symptoms, though this will have to be demonstrated in further clinical trials.

    You Are Not Alone

    If you are caring for someone with PDP, please know that you and your loved one are not alone. Open dialogue with a physician can help in developing an effective management plan. 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. (photo credit CareMap)

    Dr. Henry Nasrallah

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    Article by: Dr, Henry Nasrallah

    Sydney W. Souers Professor, Chair, Department of Neurology & Psychiatry, St. Louis University He is also the editor in chief of Scizophrenia Research and Current Psychiatry Dr. Nasrallah is the editor-in-chief of Schizophrenia Research and Current Psychiatry. He was awarded the highest research honor at The Ohio State University in 1990 and was recognized by the National Alliance on Mental Illness (NAMI) of Ohio with the Exemplary Psychiatrist Award in 1996 and 1997. He was honored with the President’s Award from the Ohio Psychiatric Physicians Association in 2007 and the Distinguished Service Award from the Cincinnati Psychiatric Society in 2008. Dr. Nasrallah received the Golden Apple Teaching Excellence Award from the University of Cincinnati Department of Psychiatry Residents in 2009.

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    1. Grace Purg says:

      I was diagnosed with Parkinson”s syndrome in may of last year. I had essential tremors since age 55. I have a stooped posture, right arm was not moving. I also have a pulsating feeling in my body. My legs tingle and they were cold.i was advised to give a try on Total cure herbal foundation herbal formula by my doctors which i truly did and the herbal treatment help me get rid Parkinson disease PD within the short period of 15 weeks usage,please do not hesitate to place an order from them at http://www.totalcureherbsfoundation.com because the herbal products relief me automatically and terminated all the symptoms.

    2. Shelley Lloyd says:

      At 60 i was diagnose of PARKINSONS DISEASE, i was on Carbidopa and Pramipexole for two years, they helped alot but not for long. As the disease progressed my symptoms worsened, with my neurologist guidance i started on natural alternative PARKINSONS DISEASE treatment from R.H.F. (Rich Herbs Foundation), the treatment worked very effectively, my severe symptoms simply vanished, i feel better now than I have ever felt and i can feel my strength again. Visit ww w. richherbsfoundation. c om. My neurologist was very open when looking at alternative medicines and procedures, this alternative parkinson disease treatment is a breakthrough.

    3. Kimberly Ferguson says:

      I am 63 year old who was diagnosed 8 months ago with Parkinson’s. I had severe calf pain, muscle pain, slurred speech, frequent falls, loss of balance, difficulty in getting up from sitting position, I was having a problem accepting my diagnosis, even though I read every thing I could find to read. I was put on Sinemet 3 times daily but it didn’t seem to be helping. After 4 months of been diagnosed I was having difficulty writing. Getting in bed, turning over. There has been little if any progress in finding a cure or reliable treatment. So this year our primary physician suggested I started on Natural Herbal Gardens Parkinson’s Herbal formula which eased my anxiety a bit,We ordered their PD herbal treatment after reading alot of positive reviews, i am happy to report with the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using herbs,8 weeks into treatment I improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of Slurred Speech, loss of balance, or weakness.

    4. Evelyn ray says:

      In April of last year, i started on natural parkinsons disease herbal treatments from RICH HERBS FOUNDATION, i am happy to report this PD herbal treatment worked very effectively. My parkinson is totally under control, i had a total decline in symptoms, the tremors, shaking, stiffness, congnition and speech problems stopped.

    5. Adam Lallana says:

      My sister was diagnosed months ago after several years of being told she had “restless leg syndrome.” She has very bad toe cramps, where here foot looks like a claw and is very painful. She was also “freezes” on trying to stand from a sitting position. She speaks so quickly and “gabbles” that we are unable to decipher what she is saying. She is now very steady on her feet after we bought the Total cure herbal foundation natural herbs ,she has fallen several times before using the herbal formula;we have to give a try on natural herbal products which really work perfectly on her.
      The herbal remedies helps her body to return to its normal position after using it for several weeks, we are obviously very concerned about other lives out there.

    6. Juliana Curtis says:

      My husband is 80 years and has been suffering from PD for the past 15 years. Lately he started hallucinating and I didn’t know how to handle the situation. He cannot sleep and tried to find and catch the imaginary people who he thinks are real. he was taken Entacapone with Levodopa, Carbidopa, and Pramipexole and started physical therapy to strengthen muscles. nothing was really working to help his condition.I took him off the Siferol (with the doctor’s knowledge) and started him on parkinson’s herbal formula i ordered from Health Herbal Clinic, his symptoms totally declined over a 5 weeks use of the Parkinsons disease natural herbal formula.i read reviews from other previous patients who used the herbal formula, my husband is now active, he can now go about daily exercise!! his symptoms so much reduced that now I hardly notice them.Visit there website

    7. solomon solomon says:

      I was diagnosed with Parkinson’s disease in my mid to late 40’s. I had hand tremors for several years. Gradually became worse. I then noticed when I was tired the tremors were worse. I started falling for no apparent reason. I now have stiffness in my legs and need to walk with 2 canes or a walker. I am very slow getting around. I am now 52 years old. I am forgetful at times and have difficulty expressing myself. I have difficulty swallowing at times. I become tired easily, I also become quite dizzy when performing any athletic function (jogging). I was on Levodopa/Carbidopa, 100/25. nothing was really working to help my condition. Finally i started on parkinson’s natural herbal formula. i read a lot of great reviews from other patients who used the parkinson’s herbal treatment. My symptoms totally declined over a 4-5 weeks use of the an herbal clinic Parkinsons disease natural herbal formula. , its effects on parkinson’s is amazing, all My symptoms gradually faded away, I have been active and hope to continue! or email at ere unbelievably reversed, herbs are truly gift from God.

    8. Sonia says:

      My grandma had Parkinson’s disease, she is about 80 years old it was detected 7 years ago. it was getting more difficult to live for her, because of stiff muscles she can’t even move. L-dopa and carbidopa medicines are given, but won”t give much relief. She can”t eat food and the skin is damaging forming ganglia. This is may be the last stage of disease.. nothing was really working to help her condition. Finally she started on parkinson’s herbal formula i purchased from Health Herbal Clinic, i read alot of positive reviews from other patients who used the parkinson’s herbal treatment. she used the herbal remedy for 7 weeks, its effects on parkinson’s is amazing, all her symptoms gradually faded away, she feed very more freely by herself now! I recommend this Parkinson’s herbal formula for all Parkinson’s Patients.

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