Me and My PD – Misdiagnosis and Confirmation Bias

Non-Artificial Intelligence Summary: The author reveals that he was misdiagnosed with Parkinson’s Disease (PD) over 13 years ago, after initially seeking treatment for Essential Tremors (ET). The article concludes with a link to an open access article on Six Myths and Misconceptions about Essential Tremor.

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Over the summer of 2025, I’ve been undergoing review of my movement disorders, with a reduction in medications as well as no clinical observation of Parkinson’s Disease (PD) symptoms.

Some thirteen or so years ago, after a neurologist or nurse practitioner observed some slight rigidity, providing enough symptoms to make a clinical diagnosis, an old high school girlfriend called to express some concern and to wish me the best. Apparently, she was under the misconception that PD was equivalent to a slow death. Glad to say she must be mighty disappointed after all these years.

I had essential tremors (ET) from my teen years, in addition to several other prodromal conditions or symptoms relating to PD. In 2010 the ET had become somewhat disabling, and after many months of unsuccessful treatment for ET, I opted for Deep Brain Stimulation (DBS), which apparently had a great success rate with ET. However, in order to rule out PD, several months of tests were undergone, with the eventual three of four of the cardinal signs being observed. DBS was scheduled less than two months later. Seven years later, due to a lack of progressive neurological deterioration, a DAT Scan was ordered, with an interpretation that I apparently did have some form of parkinsonism. Apparently, the original diagnosis of PD was premature and made under the influence of confirmation bias. Or, to paraphrase Paul Simon, a person sees what they want to see and disregards the possibility of other underlying causes for a barely detectable symptom.

Finally, after moving to a different state and establishing care with a Movement Disorder Specialist, who conducted their own evaluation on and off PD medications, the original problem (ET) which brought me to a neurologist in 2010, was confirmed. The process of titrating off medications continues.

Naturally, I have been delving into the National Institutes of Health open access in order to learn more about what has been called “familial tremors” and “benign tremors” in the past.

One thing I have learned is the diagnosis of ET and PD can be difficult, due to many overlapping symptoms or conditions, they are linked genetically for some ET cases, and much of the material on PD doesn’t even investigate whether the two conditions are concurrent.

So another reason for me to go on living: educate and advocate for people who may or may not have a diagnosis appropriate to their condition.

We’ll start here, with a recent article on Six Myths and Misconceptions about Essential Tremor.

You learn something new every day…

… or die trying. (Don’t know if that’s an actual quote, or if I just made it up.)

Actually, looks like I’m the author that specific quotation.

 Ralph Waldo Emerson said “Knowledge is when you learn something new every day. Wisdom is when you let something go every day. (at least that’s what Google search told me – kind of a “Jesus loves me, this I know, because the Bible tells me so” moment. Do I believe Google, or do I do further research to locate when and where he wrote or “said” the phrase, or do I I trust my source, and just let it go?

Letting things go, which I have a difficult time doing, is something I’ve had to learn, sometime as a new thing to learn, on a daily basis. One technique learned is to let go of an old book whenever a new book is brought into the house. Or so I claim. This has been difficult for a person who had at least 22 linear feet of of bookshelves, and only brought eight feet with him to Oklahoma.

And so it goes….

The following picture is a manipulated photo of sinus discharge, of which I have experienced more over the last week than I would wish on anyone during their lifetime.

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Shoes: Vincent’s, Bob’s, and Carl’s

I once had the pleasure (or punishment) of reading from Jacques Derrida’s “A Derrida Reader: Between the Blinds, ” a collection of essays and lectures translated from the original French  while doing volunteer work with Vocal Eyes, a group at the University of Florida in. Gainesville Florida, which read various textbooks which were not available through Books on Tape, Recordings for the Blind, or other sources, in order to provide assistance to others who may have had impairments or disabilities, such as partial or full blindness, years of promotion through a coach’s pressure on academics instead of insisting they be taught to read at their grade level (for the sake of the young person and not for the sake of the coach’s desire to have a winning team – and if you think this is a run on sentence, you should definitely try reading this book, which can be found on the internet archive (but only available for vision impaired people), or can be found at various used bookstores for under $12.00. 

The purpose of mentioning this somewhat dense and difficult to read book (although I must admit, by the time I had reached his discussion of Vincent Van Gogh’s painting of a pair of shoes, I had gotten into the rhythm of the lecture and had started reading with feeling, emotion, and meaning, which hopefully helped whoever was having to listen to this book as an assignment).

Nope, the reason for this lengthy prologue was to introduce a couple of photos, one from the book Van Gogh: The Complete Paintings, and the other, a photo of my own hiking boots, which had reminded me of the essay about. the boots, so I manipulated my photo to imitate (sort of) Van Gogh’s pair of shoes. Whose shoes Vincent had painted, I do not know. I actually had some shoelaces showing in the original picture of my shoes, but they were cut off during the cropping.

Vincent Van Gogh: Pair of Shoes / Bob Kamper: Hiking Boots

Vincent Van Gogh: Pair of Shoes / Bob Kamper: Hiking Boots

Kinda anti-climactic, no?

Oh well, I can always end the post with a song and a question:

Who wrote “Blue Suede Shoes?”

and a reprise:

Carl Perkins with Eric Clapton, George Harrison, Ringo Starr, Dave Edmunds, and many more…