5 tips for Parkinson's disease psychosis
Who is Joe Friedman?
Dr. Joseph Friedman received his bachelor's degree at the University of Chicago in mathematics, a master's degree in math from Washington University, a MD from Columbia University College of Physicians and Surgeons, a Neurology Residency at the Neurological Institute of New York, Columbia-Presbyterian Medical Center and then moved to Rhode Island in 1982. He has had a long and legendary career in clincal research related to movement disorders, primarily Parksinon's disease, but also Huntington's disease, drug induced movement disorders, Machado-Joseph disease, and others. He was editor in chief of the Rhode Island Medical Journal for 20 years. He has published over 200 peer reviewed articles in Parkinson’s disease and movement disorders. Check out his amazing e-book with loads of practical tips, anecdotes and videos.
1. What is psychosis?
Until a few years ago the term psychosis referred to “the loss of reality testing. Psychotic patients might believe that their minds were controlled by rays from outer space, or that the FBI was spying on them, or they might hear voices talking about them when no one was around. In recent years psychiatric thinking about psychotic states has changed and we talk about psychotic symptoms or particular disorders with specific psychotic symptoms. Unfortunately, psychotic symptoms are common complications of the medications we use to treat the motor problems of PD, like tremor, slowness and shuffling gait.
In persons with Parkinson’s (PWP), these fall into three categories, hallucinations, delusions, and illusions. Hallucinations are false perceptions that occur in one of our special senses: seeing, hearing, feeling, smelling or tasting things that are not there. In PD, the most common hallucinations involve seeing things not aren’t really there, usually people or small animals. Generally, the hallucinations ignore the patient, and don’t interact. They are rarely scary.
Dr. Friedman’s talk on common behavioral issues for PWP.
Illusions are distortions of images that are really there, but are misperceived, seeing faces in a flower, a boy with a dog instead of a fire hydrant, a dog in the shadows. We all have illusions once in a while. This is a problem in PWP only when they are much more common and realistic than normal.
Most disturbing, and, luckily, the least common are delusions. These are false, irrational beliefs, usually paranoid, thinking your spouse is having an affair, that the neighbors are planning to invade the house, that people are living in your home, that your spouse has been replaced by an impostor who looks like the spouse.
A fourth symptom, called “presence hallucination” is not truly an hallucination, as nothing is seen or heard. It is a strong sense that someone or something else is in the room, either to the side or behind, so it can’t be seen. There is a feeling of a “presence,” never frightening, but mildly annoying.
2. How common are psychotic symptoms?
It is generally thought that about 20-30% of PWP treated with PD medications have hallucinations or other psychotic symptoms. Visual hallucinations are the most common problem. Auditory hallucinations are second most common. Smell, taste and tactile (feeling) hallucinations are far less common.
Delusions occur in about 5% of treated persons or less. These are generally much more troubling because they tend to be paranoid. They often occur in persons already having hallucinations, but may occur without the hallucinations.
3. What causes psychotic symptoms?
They are usually caused by medications. These are primarily the same medications used to treat motor symptoms of PD, but can also be caused by other medications particularly some medications used for overactive bladder problems such as oxybutynin and tolterodine. With recent increased use of “medical” marijuana products, these should be considered as contributory, as well, although marijuana doesn’t cause hallucinations in normal people not taking PD meds. It is rare for a PD patient to develop hallucinations without being on medications, but it may occur. And even though the hallucinations may have developed shortly after a new medication was started, or an old medication was increased, it is not necessarily the new medication’s “fault” alone. Having hallucinations is like becoming intoxicated. If you drink some beer, wine and then a few cocktails, what you drank last is what put you “over the top” in terms of becoming drunk, but it would not have done so if you hadn’t drunk the beer and wine first. It is the combination of the medications, each contributing to the problem.
Infections also can precipitate hallucinations and delusions, usually with some degree of confusion as well. We call this “a delirium.” Families often know the PWP has a bladder infection when the hallucinations begin, even without the usual symptoms of a urinary infection.
4. Should I tell my family and my doctor?
YES!!! First of all, your doctor should tell you that this problem may develop as a medication side effect in advance of starting the pill. She/he should also tell you that you should inform your family of this possible side effect, and that if it happens to NOT PANIC, but call her. You are not going crazy. You should probably not go to the emergency room, or call your PCP. Call the neurologist, who will reassure you and discuss medication adjustments.
Many patients are embarrassed to discuss hallucinations because they worry that others will think they’re crazy, or that they will be placed in a psychiatric hospital against their will. They do not think that this is simply a common medication side effect.
Even more important is for the neurologist to ask about delusions, because these are usually kept secret for several reasons. The most common delusion we found in one study in Rhode Island, were delusions of jealousy, that is, the irrational belief that the spouse, male or female, was having affairs. This makes the patient feel embarrassed and vulnerable, and often unwilling to let anyone know their concern. The spouse, also deeply embarrassed, also feels vulnerable. Both are angry, one for being cheated on, and the other, who has devoted her/his life to the loved spouse, for being suspected of something that is usually impossible.
5. What should I do about them?
Simply call your PD doctor and ask for guidance. Usually, medications are adjusted, but sometimes laboratory testing is necessary, because infections may also trigger psychotic symptoms. However, in many cases, the medications cannot be reduced because the reduction will worsen mobility. In this case, an antipsychotic drug will be introduced. In the U.S., pimavanserin is FDA approved for treating this problem. However, it takes about 4-6 weeks before it starts to work, so it is useful for mild psychotic symptoms that can be tolerated for 4-6 weeks. The most widely used drug for this, although not approved anywhere for this purpose, is quetiapine. Published data in support of quetiapine is weak. Clozapine is a third drug for this, and although proven to be helpful for this and working in a much shorter time than pimavanserin, is approved only in Europe and Israel for this purpose. Unfortunately, it requires frequent blood testing which makes it difficult to use.
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.