My Season with Parkinson's Disease: Pt 1
Hallucinations
My first neuro visit was the day after my birthday in March 2022. It was the fifth of six1 current Agent Orange issues I have from Vietnam. I had just turned 73 the day before. There were several reasons that I asked my primary care physician (PCP) for a referral. One was a curious and repetitive pill-rolling action I did with my thumb and forefinger while watching television or lost in thought. I could stop it when my wife pointed it out, so I had some voluntary control, but it occurred mainly when I was preoccupied with something else. The second issue was that we were in the process of purchasing a home, and I had to sign about 30 different applications, disclosures, etc., sometimes in several different places. For some reason, repeatedly signing my signature over and over was not as effortless as in the past. Finally, my wife noticed that my voice was becoming increasingly soft, making it difficult for her to hear me.
My experience working and teaching in the health care sector brought Parkinson’s disease immediately to mind. My older brother, who served in Vietnam nine years before I did, already had Parkinson’s disease. And as it was an Agent Orange issue like the four other Agent Orange issues I had, I should not have been surprised by an additional problem. My PCP readily agreed to refer me to neurology, but her reason was “shuffling gait.” That I had fallen three times in the two prior years, fracturing bones in my foot and wrist, and that I had a frozen shoulder when I first saw my neurologist, only reinforced the provisional diagnosis.
July 2026: My First Hallucinations
One of the routine questions my neurologist asks me every time my wife and I see her is whether I have had any auditory or visual hallucinations in the six months since we last met. I was not sure what sort of hallucinations they might be, and I always replied no. But over the last two weeks, I am convinced I had a hallucination on each of two occasions. Both times, it was exactly the same occurrence, though in different settings. The first time was in our smaller living room. My wife and I were sitting facing each other talking. I was on a chair and my wife was about four feet away from me on a couch. Suddenly, without warning, something zipped by from the right edge of my visual field, moving rapidly to the left. It appeared to be a bug on the floor about the size of a large mouse. But before it could cover half the distance of my visual field, it disappeared. This same sequence was repeated a week later while we were dining in a restaurant with family and friends. Looking about 10 to 15 degrees to my right, I saw the same phenomenon a second time. In both cases, it was startling. The first time it happened, at home, I tried to rationalize it, thinking it was some sort of vitreous opacity, a floater, in my eye, which I have had to deal with for several decades on and off. Once I ruled that out, I knew on the second occasion it was a hallucination, even as it was still fresh in my mind. On both occasions, “it” was “visible” only one or two seconds, but it was fairly sharply defined, not nebulous.
Among patients with Parkinson’s disease (PD), visual hallucinations initially can be either initiated or shaped by low lighting conditions, which can cause misperceptions of common objects. And while patients with PD often have different experiences and different rates of progression, fleeting visual hallucinations are very common, even in the earliest stages of the disease. These hallucinations generally emerge from the far edges of the patient’s peripheral visual field, as did mine. Other early hallucinations involve illusions, “the misinterpretation of a real, external sensory experience,” which involve actual objects that are misperceived or misidentified. Then there is a term called pareidolia, which occurs when the brain sees a pattern in an object or sequence and fills in the missing gaps with false information in order to make the object more identifiable. Rocky cliffs weathered to resemble a face, or familiar patterns seen in a Rorschach inkblot test, are examples of pareidolia. Because the inkblots are random, mirror-image patterns, much can be learned about a person’s perception and personality based on their comments on each card of the test.
People who are creative, emotionally sensitive, tense, religious, exhausted or in the early stages of dementia or Parkinson’s Disease are more prone to experience pareidolia. Men and people with autism are less likely to encounter it.
My two “bugs” are classified as passage hallucination because of their behavior. As hallucinations go, they are minor, fleeting, and non-threatening. But in fact, common examples of passage hallucinations in PD patients consist of insects or small animals. Then again, there is the context. Early hallucinations in PD can occur in poorly lit environments, during times of calm or quiet, and often in the evening or night.
Eventually, I may graduate to presence hallucinations. These are subjective feelings, occurring on occasion, that somebody is present, usually thought to be behind the PD patient’s shoulder. Or it can be a vague sense that someone is nearby. Auditory hallucinations, such as perceived footsteps, can accompany and reinforce presence hallucinations. As an example, when we hear a voice while out and about at the same time we see another person nearby moving his or her lips, we may assume the voice and the lips belong together, that is, to the same person. However, sometimes we suspect that they do not fit together. An adult with a small child’s voice, or a woman singing baritone (technically possible though rare), might make us hesitate before joining the two stimuli.
Eventually, the hallucinations may overpower my reasoning or derail my ability to dispute or resist them. One reason is that I might fall into the category of approximately thirty percent2 of PD patients who develop Lewy body dementia. Dementia robs a patient of rational faculties. Of the remaining 70 percent or so, there is nevertheless the problem of mild cognitive impairment (MCI), which is common as a normal person ages. In September 2022, I received an MRI without contrast, and the radiologist noted “moderate parenchymal volume loss,” meaning my brain had shrunk, or atrophied, as all brains do if one lives long enough. That does not mean I have mild cognitive impairment, but it is a risk factor for MCI.
For more on hallucinations in general, please see Psychology Today.
While I was able to immediately recognize that these two occurrences were not real, over time, as they increase in number and become more substantial than a mouse-sized bug scampering across the floor, my mind by then may no longer be able to discern reality from hallucinations.
Agent Orange
Agent Orange was a defoliant containing the chemical dioxin, which was used by the United States during the Vietnam War for over a decade to denude hundreds of thousands of acres of the thick jungle canopy that concealed Vietcong and North Vietnamese encampments and positions. Those American soldiers who served in that theater of war during the years that Agent Orange was deployed were exposed to one or more carcinogenic chemicals that can also cause serious illnesses such as multiple myeloma, Hodgkin’s disease, and, of course, Parkinson’s disease.
If you were a veteran who served in Vietnam, or off the coast, on active duty between January 9, 1962, and May 7, 1975, you may be eligible for compensation and/or VA Health Care. Visit this site for more information.
Footnotes
1My six current Agent Orange issues include Hypothyroidism, Type-II Diabetes, Ischemic Heart Disease, Hypertension, Bladder Cancer, and Parkinson’s Disease.
2Care must be taken here. The figure “thirty percent” is battered about carelessly. What it seems to actually infer is that at any given time, only thirty percent of patients with Parkinson’s Disease have Lewy Body Dementia at any given time. This means that the fact that I may not be part of that thirty percent cohort now does not immunize me from contracting it several years from now.
