My Parkinson’s Portrait Is Outside the Classic Criteria

My Parkinson’s Portrait Is Outside the Classic Criteria
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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.

***

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.

I am a retired professor and research scientist along with being an artist, philosopher, writer, therapist and mystic. I am also a husband, father, grandfather, master gardener and Vietnam Vet. All of these roles influence how PD interacts with my life’s journey.
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I am a retired professor and research scientist along with being an artist, philosopher, writer, therapist and mystic. I am also a husband, father, grandfather, master gardener and Vietnam Vet. All of these roles influence how PD interacts with my life’s journey.
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15 comments

  1. Marina Alvarez says:

    Tengo 42 años ase dos años fuí diagnósticada con Parkinson pero con la levodopa me mantengo bastante bien mis síntomas están controlados gracias a Dios

    • Dr. C says:

      Thanks, Kathleen. I appreciate you taking the time to check in on my column and with BioNews. It’s very encouraging to me to have the privilege to share my journey and thoughts about living with PD.
      Dr. C.

    • Dr. C says:

      Hi Carl ~ I’m not a medical doctor but I can suggest as a fellow Vietnam Vet that you contact the Veterans Administration for programs to assist. The folks at the VA are working very diligently in identifying health needs of Vets. I appreciate your reading my column and hope you continue to check in with BioNews and “Possibilities with Parkinson’s” — and, as always, Thank You for Your Service!
      Dr. C. (USMC)

    • Dr. C says:

      Hi Carlos ~ Thanks for taking the time to read my columns. Hope you continue to check in with BioNews and “Possibilities with Parkinson’s”.
      Dr. C.

    • Dr. C says:

      Hi Vicky ~ I appreciate your taking the time to say the column was helpful. I hope you continue to check in with BioNews and my columns for more information.
      Dr. C.

  2. There is more art to diagnosis than science…that is why we need truly gifted physicians as only they will see deeply into the trials of the human body. Persistence will find those doctors. It is not an easy path.

  3. E says:

    Refreshing to hear of others with NON Standard Parkinson’s.

    Would love list of references to open minded Neurologist with this understanding. As the standard treatment just doesn’t work or at least work well.

    Appears Parkinson’s is a huge umbrella or as I caught my Maid doing sweeping debris not picked up by the vacuum under the carped or rather the umbrella labeled Parkinson’s.

    Regardless of lack of tremors, cognition issues, total neurological burning, construable dystonia on off periods, yes controllable chemically induced (Carbi Dopa / Leva Dopa) DYSTONIA and so much more.

    If the Doctors can’t explain it it’s Parkinson’s even if the Doctors took the time to truly evaluate they simply do not have the training or understanding to deal with such deviations.

    Come Obama care and the medical world becomes even more watered down. And if you do not respond by the numbers or are out of sequence you get ignored with passive resistance or worse dropped, with the slogan you failed to THRIVE, so it’s your fault. A true diagnostic is fiction and when asked at a round table meeting of Thirteen (13) specialist and the head of Neurology along with an administrator two nurses and support sectary the first mention of Dr. House came with low chuckles an hour later the second incantation of Dr. House came with dead silence.

    Best to all dealing with Medicine by the numbers.

    • Dr. C says:

      Hi E ~ The science behind Parkinson’s disease is not yet at the point where providers can use skilled diagnosis across the umbrella that covers PD. I remain hopeful that new and additional research will continue. Each of my columns on BioNews has links to specific resources I cite in my writing. If you click on those links, you will find additional material. I hope these additional resources will be helpful to you and your providers.
      Dr. C.

  4. Karen St. Clair says:

    I disagree. I think to a great extent it is the doctors fault in that they have not stayed up to date with current medical trends and information.
    The Journal of the American Medical Association had an article in Jan. 2018 titled “The Parkinson’s Pandemic”. It went on to explain the explosion in PD diagnoses and the expected rapid increase in PD. Are they even reading their own publications? Very curious! My husband had to go to Italy to be diagnosed!

    • Dr. C says:

      Hi Karen ~ What I’m advocating for is that the science and understanding of PD needs to be advanced for providers to have more tools so they can do a better treatment for PD. It is the basis for much of my research and writing with BioNews. I understand your frustration — we have had similar experiences. I hope that your husband has found a provider to work with him. I hope you continue to read my columns and check in with BioNews for more information.
      Dr. C.

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