Parkinson's Psychosis

 

Parkinson’s major physical motor symptoms are well known: tremors, bradykinesia (slow movement), rigidity, and postural instability (balance). People are less aware of PD non motor symptoms especially hallucinations and delusions. Parkinson’s Disease Psychosis (PDP) affects 50% of PWP during the course of the disease. Such a lovely disease. It is not enough for PD to turn us into physical wrecks. Symptoms keep developing and PD is not satisfied until half of us are psychotic as well.

Psychosis affects the way the brain processes information causing delusions and hallucinations. Hallucinations are seeing, hearing, or experiencing things that others don’t. Examples are seeing people (living and dead), animals (often rabbits), or objects, hearing voices, music, and sounds not heard by others. Delusions are believing things that are not true. Believing people are trying to steal your money or are talking about you and planning to harm you are typical delusions and can result in paranoia, fear, and violent reactions.

Diagnosing and treating PD Psychosis is tricky. Parkinson’s Disease Psychosis is considered a neuropsychiatric condition because it relates to both neurology (the nervous system) and psychiatry (mental, emotional, and behavioral health). It is a mental health condition (hallucinations and delusions) caused by a nervous system disease (Parkinson’s disease).

Researchers are not certain as to the exact cause of PD psychosis but believe that the side effects of dopamine drug therapy is the main cause and that the natural progression of PD can also be involved. Dopaminergic therapy increases dopamine levels in the brain helping improve motor symptoms in people with Parkinson’s disease. However, increasing dopamine levels can also cause chemical and physical changes in the brain. All current PD medications can potentially cause hallucinations and delusions. 

Psychosis can also be caused by the chemical and physical changes in the brain that occur as a result of the progression of PD regardless of taking dopamine­ enhancing medication. Some of these changes occur naturally as Parkinson’s disease progresses. We cannot predict who will experience hallucinations or delusions but risk factors are age, duration of PD, severity of PD, and how long PD drugs are taken.

Psychosis in PD significantly reduces the quality of life for PWP. Psychotic symptoms are also associated with a higher risk of dementia and is the most important risk factor for transfer to a nursing home. It is associated with reduced survival and increased risk of death. It can also be hell on family, loved ones, and caregivers who have to deal with and witness the mental disintegration of the person with psychosis.

Up to 90% of PWP who are having hallucinations or delusions do not tell their doctor but it is the most important thing that you can do to combat it. Your medical team and caregivers should be aware of all your symptoms so they can best treat them. PD psychosis can be treated with antipsychotic medicine and by reducing or stopping PD medications.

The Parkinson’s Psychosis Rating Scale (PPRS) assesses the severity of specific symptoms of levodopa induced psychosis in PWP. The first five questions identify the type of hallucination (visual, auditory, smell, sense of presence) or delusion. The second five questions quantify the intensity, frequency, and impact of the worst psychotic feature. It takes ten minutes to do and is available on the internet.

Treating Parkinson's

There are three main problems in treating Parkinson’s Disease. Everyone’s symptoms are 

different so everyone’s treatment plan is unique to them, the disease is progressive and only gets worse, and there is no cure.

There is no standard diagnostic test for PD only a collection of symptoms. There are four main motor symptoms - tremor, bradykinesia, rigidity, postural instability - and 10 or 11 secondary motor symptoms - freezing in place, unwanted acceleration, speech problems, micrographia (cramped handwriting that gets progressively smaller)- as well as 10 - 15 non motor symptoms - depression, anxiety, mood changes, fatigue, sleep problems, cognition problems, excessive saliva, etc. According to my neurologist, if you have three or more of the major symptoms you have PD.

Since everyone has a different collection of symptoms and each symptom shows to a different degree, the treatment for each person is different because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. But in face of that many people with PD live their life as if they have the cure in their hands, they are the cure. They have taken the responsibility of improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor and taking pills is only one part of dealing with PD. I learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource. In fact, doctors seem genuinely interested in learning from me.

Most people with PD that I know are their own doctor making decisions as to how to best treat the disease. They consult with their friends in the PD community as well as their doctor. The latest research, how best to deal with and how to treat PD, is an ongoing active discussion topic among PWP.

There is always exciting news about possible cures and new treatments for Parkinson’s but everyday treatment is essentially the same since the 1960’s introduction of levodopa which is converted into dopamine in the brain. Modern research into gene therapy and stem cell treatments is promising but in 1817 in his “Essay On The Shaking Palsy” Dr. Parkinson’s predicted “Although, at present, uninformed as to the precise nature of the disease, still it ought not to be considered as one against which there exists no countervailing remedy. On the contrary, there appears to be sufficient reason for hoping that some remedial process may ere long be discovered, by which, at least, the progress of the disease may be stopped.” The good doctor described the disease well but had a little too much faith in the medical communities ability to stop the progression of or cure PD. It’s been 200 years and we are still uninformed as to the precise nature, there still is no cure, and nothing stops the progression of the disease. The best thing you can do is be healthy, take you meds as prescribed, exercise, and to enjoy and live your life.

Parkinson's And Chocolate

Parkinson’s has been known and studied for hundreds of years but in many ways not much is known about it especially how to prevent it, stop the progression of it, or cure the disease. Research is often contradictory. The latest uncertainty is about chocolate. Is it good for PD, is it bad for PD, or does not affect PD at all? Interesting fact, people with Parkinson’s seem to like and consume significantly more chocolate than people that don’t have PD even in people where consumption in the amount of other sweets is the same.

What is chocolate and why does it taste so good? The word “chocolate” comes from the Aztec language word xocolātl which is a combination of the words xococ (meaning ‘sour or bitter’), and ātl (‘water or drink’) because for most of it’s existence chocolate was consumed as a drink. Chocolate contains stimulants like phenylethylamine (B-PEA) and caffeine which give you a positive boost and the feel good chemical anandamine. Europeans added sugar and honey as sweeteners. The result is that nearly everyone likes it and the rest is history.

A study by Dresden University of Technology in Germany has suggested that eating dark chocolate on a daily basis could help ease symptoms of Parkinson's disease. It is believed that phenylethlamine, a cocoa compound, can increase the release of dopamine in the brain and help prevent PD symptoms like tremors. 

A word of warning though, the same phenylethlamine may be toxic to dopamine neurons. Some studies cautioned not to eat too much dark chocolate as it is one of the foods richest in B-phenethylamine which may actually cause Parkinson’s. B-PEA could lead to the production of hydroxyl radicals that stress dopamine producing areas of the brain and cause PD.

Other studies report that chocolate neither harms nor is beneficial for PD and that more research is needed. I would volunteer for that clinical trial. It would be a honey of a study and produce one sweet report. So what is a poor PWP to do? If you like chocolate eat it with pleasure.

New Non Invasive DBS

There are now two brain procedures that are FDA approved for use in Parkinson’s: deep brain stimulation (DBS) and non invasive high intensity focused ultrasound (FUS). Deep Brain Stimulation has been successfully used more than 160,000 times to treat people with movement disorders (Parkinson’s, essential tremors. dystonia), neurodegenerative disease (Alzheimer’s), neurological disorders (epilepsy), and increasingly for psychiatric disorders (depression, Tourette’s disease). DBS works by delivering constant electrical stimulation to problem areas of the brain similar in concept to a pacemaker for the heart. It involves implanting electrodes deep within the brain. The amount of stimulation delivered by the electrode is controlled by a pacemaker-like device placed under the skin in the chest. DBS is a physical operation that drills holes in you head and inserts electrodes into target areas deep within the brain as a first step. This part of the procedure is done with the patient conscious so they can answer questions and respond to instructions by the surgeon. The second part of the procedure involves inserting a neurotransmitter, usually just below the collarbone, that sends electrical pulses to the electrodes through wires running from the brain under the skin of the head, neck, and shoulders to the transmitter.

I’ve had Parkinson’s  for eight years and would like the benefits of DBS but am afraid of the operation. Drill holes in my head, stick electrodes in my brain, insert a battery pack transmitter in my chest, and run wires inside my body - you have to be kidding, definitely not for me, too scary. I know it’s helped a lot of people but no thank you. I pass on DBS. That is until now because in 2018 the FDA approved a new non invasive DBS for use with PD tremors and PD related dyskinesia that does not benefit from medicine.

Focused ultrasound is a non-invasive surgical procedure that uses ultrasound waves to destroy brain cells in the basal ganglia that cause movement problems. FUS is FDA approved to treat Parkinson’s tremors and is in clinical trials for dyskinesia (uncontrolled, involuntary movements that can develop with long-term use of levodopa). MRI brain imaging is used to precisely guide and direct high intensity focused ultrasound waves to destroy target cells deep in the brain that cause movement problems without harming non target tissue.

Focused ultrasound is a one step procedure that is non invasive and does not require putting electrodes in the brain, batteries that need replacing or recharging in the chest, or wires that connect them and does not need doctor office visits for programming. It uses MRI imaging to guide ultrasound beams to destroy brain cells that cause tremor without requiring anesthesia. Ultrasound is not reversible because it destroys brain cells. The problem with focused ultrasound is that it can now be performed on only one side off the brain meaning it eases symptoms on only one side of the body. When done on both sides it caused problems with speech, swallowing, and cognition. Unlike DBS, FUS does not require any maintenance. There are no wires, electrodes, or batteries, and it does not need repeated doctor visits for programming. FUS is new. We do not know the long term effects. DBS has been around for twenty years and is well tested and known. It usually benefits PWP for about ten years.

Both DBS and FUS help alleviate symptoms. What we really need is a cure.

Famous People With PD

 

Neurological disorders are now the leading cause of disability. Parkinson’s disease is the fastest growing disability. More than 10 million people worldwide have been diagnosed with Parkinson’s. Some as early as 20 years old others not until 80. Researchers believe the number of people with PD will double by the year 2040.

Michael J. Fox, Actor, Parkinson’s Activist, diagnosed in 1991 when 29 years old

Muhammad Ali, World Champion boxer,  PD Activist, diagnosed in 1984 at age 42 

Bhumibol Adulyade, King of Thailand, when diagnosed not known

Alan Alda, Actor, diagnosed in 2015 at age 79 

Roger Bannister, Champion Olympic Athlete, diagnosed 2011 at age 81

Margaret Bourke-White, Photographer, first celebrity to reveal PD diagnosis in 1952 at age 48 

George H. W. Bush, 41st US President, diagnosed in 2012 at age 88

Michael Richard Clifford, Astronaut, PD Activist, diagnosed in 1994 at age 42 

Salvador Dali, Artist, diagnosed in 1980 at age 76

Neil Diamond, Musician, diagnosed in 2018 at age 77

Francisco Franco, Spanish Dictator, diagnosed in 1965 at age 73

Kurt Gibson, Baseball Player, PD Activist, diagnosed in 2015 at age 61

Billy Graham, Evangelist, diagnosed in 1993 at age 75

Brian Grant, Professional Basketball Player, PD Activist, diagnosed in 2008 at age 36

Chester Himes, Author, when diagnosed not known

Ian Holm,  Actor, diagnosed in 2001 at age 70

Jesse Jackson, Civil Rights Leader, diagnosed in 2015 at age 74

Dave Jennings, Professional Football Player, diagnosed in 1996 at age 44

Ba Jin, Chinese Author and Political Activist, diagnosed in 1983 at age 79

Pauline Kael, Film Critic, diagnosed in 1982 at age 63

Deborah Kerr, Actress, diagnosed in 1992 at age 71

Gene McCarthy, American politician, when diagnosed not known

Mao Zedong, Chinese Revolutionary Leader, diagnosed in 19710 at age 78

Ozzy Osborne, Musician, diagnosed in 2019 at age 70

Pope John Paul II, Pope, diagnosed in 1991 at age 70

Ben Petrick, Baseball Player, diagnosed in 1999 at age 22

Davis Phinney, Cycling Champion, PD Activist, diagnosed in 2000 at age 41

Vincent Price, Actor, diagnosed in 1990 age 79

Sir Michael Redgrave, Actor, diagnosed in 1972 age 64

Janet Reno, US Attorney General, PD Activist, diagnosed in 1995 at age 57

Linda Ronstadt, Musician, diagnosed in 2012 at age 66

Charles Schulz, Created Peanuts, diagnosed in 1975 at age 53

Terry Thomas, Comedian, diagnosed in 1971 at age 60

Glen Tipton, Musician, diagnosed in 2008 at age 61

Pierre Elliot Trudeau, Canadian Prime Minister, diagnosed in 1996??? at age 76

George Wallace, American Politician, diagnosed in 1992 at age 73

Robin Williams, Actor, diagnosed in 2014 at age 63