My Parkinson’s Portrait Is Outside the Classic Criteria

During my training for the U.S. Marine Corps at Camp Lejeune, North Carolina, in 1968, I was exposed to toxic chemicals in the water. Later, the U.S. Department of Veterans Affairs investigated and found that Parkinson’s disease was strongly associated with exposure to those toxic chemicals.

Out of the flames and into the fire, I was thrown into the jungles of Vietnam, where toxic chemicals also were widely used. According to the History channel, under one U.S. program code-named Operation Ranch Hand, more than 20 million gallons of herbicides were sprayed over Vietnam, Cambodia, and Laos, from 1961 to 1971. Vietnam’s Da Nang province, where many operations were based, was heavily sprayed with Agent Orange.

The connection between my symptoms and Parkinson’s disease was not made easily. In the early stages of the disease, I was given a multitude of diagnoses and treatments. Most treatments did not work. Tests were inconclusive, although they showed abnormal results most of the time.

Diagnoses of potassium deficiency, familial partial paralysis, multiple sclerosis, and “stick-man disease” were thrown into the mix like spaghetti on a wall in hopes that it would stick. Nothing fit, which was very discouraging.

My symptoms began interfering with work in 2004, and finally forced me to quit teaching — which I loved — in 2014. The same year, I was diagnosed with Parkinson’s disease.

My diagnosing physician tried the “gold standard” test of administering levodopa. The difference in my functioning was incredible. Since then, the disease’s progression has been slow, for which I am grateful.

I do not present with the classic Parkinson’s symptoms pinpointed over 200 years ago, which many neurologists have identified the “only” presentation of the disease.

It is interesting to note that James Parkinson, who first described the disease that shares his name in 1817,  reported “on six case sketches, three of the patients observed in the streets of London and one only seen from a distance.” Imagine that modern science in the 21st century continues to cling to a diagnosis proposed from observing only six cases way back in 1817. It’s not the doctors’ fault — our science has been lagging.

To date, there is not a better diagnostic match for the symptoms I present, which include:

Persistent symptoms

• Muscle pain and rigidity
• Excessive sweating with poor homeostasis regulation
• Increasing intolerance of heat and cold
• Restlessness and sleep problems, including insomnia and acting out motor movement
• Circadian rhythm disruption with episodes of prolonged wakefulness late into the night
• Hypersensitivity to sound
• Numbness and tingling on the right side of the body, and right and left foot drag
• Temporomandibular joint problems and nocturnal bruxism, with muscle spasms on the right side of my face
• Surges of sadness and anxiety with emotional lability, which have no context and occur daily during off periods
• Reduction in eye blinking

Episodic symptoms

• Episodes of slowed movement, along with a decrease in motor coordination due to amplitude control issues (constantly missing or dropping things)
• Episodic constipation and abdominal cramping and dysfunctional urinary retention
• Episodic drooling with orgasm
• Episodes of deep fatigue accompanied by a decrease in cognitive performance

Neurologists have documented the “cogwheel effect” in my right arm. I teeter with unstable walking when doing the toe-to-heel pattern, but am normal in other balance and walking tests.

Additional clinical evidence was reported by other specialists who link their expert diagnostic skills with manifestations known in Parkinson’s, such as urology and ophthalmology.

I shared an incident with my new neurologist that happened just after we had recently finished moving to a new house. I experienced nonexertional shortness of breath and wanted to be sure it wasn’t caused by COVID-19. But something unusual happened in the hospital’s emergency room: I was chatting with the doctor, who said, “You can put your arms down now.” I looked and saw that indeed my arms were frozen in midair.

Two years ago, I had an imaging test known as a  DaTscan to look for Parkinson’s-related brain damage. The results were negative. But a major portion of brain must be affected to receive a positive test result. The common assumption is that progression must happen at a pace that shows dramatic worsening in Parkinson’s patients five years after initial diagnosis. That hasn’t happened with me.

Much of my writing is about the early detection and treatment of Parkinson’s. If providers are looking for the patient to fit into this feeble, old-guy Parkinson’s “box,” then how will early detection and treatment ever be possible? When a physician rejects the symptoms or the findings of other specialists, I ask, “Well, what do you think is going on?” I am most often met with silence. It’s not the doctor’s fault — the science is missing something.

For patients like me who have non-tremor Parkinson’s disease, we need the door held open to the possibility of a form of Parkinson’s that falls outside classic criteria — particularly if we seek early detection and adequate treatment.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.