Tag Archives: essential-tremor

Essential Tremors, movement disorders, Parkinson's, Research, Reviews , , , , , , , Leave a comment

My Personal Journey with Medical Misdiagnosis

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Or, What I did last Summer

We remember, fondly or not, typical school essay topics:

  • What I did last summer
  • How my family celebrates the winter holidays
  • What America means to me
  • My favorite (TV, movie, book, song, musical group)
  • Things my parents tell me not to tell other people
  • The greatest American President

I once wrote an essay about a relative. I actually took the question seriously, instead of offering the usual platitudes. I pondered on a negative experience: the untimely death of a child. This loss could have been prevented with more timely reliance on medical providers. Of course, this happened well before penicillin became widely available for treatment of appendicitis or peritonitis. As a parent, I promptly responded when my child complained of abdominal pain. She was treated for appendicitis and survived.

This past year, my summer was also related to a missed diagnosis. Fortunately, no one died, although I had been treated for the wrong condition for over a dozen years. It has been said that physicians bury their mistakes. Not this time. Instead, the differential diagnosis and removal of medications triggered research into the differentiation between Essential Tremors and Parkinson’s Disease. Another side effect was rewording this blog’s subtitle, replacing PD with Movement Disorder. 

I submitted an abstract to the World Parkinson’s Conference. It will be held in May of 2026. Unfortunately, the abstract didn’t make the cut. Perhaps the abstract failed to include enough information, perhaps it didn’t have a positive enough bias in its presentation. Whatever. The research found misdiagnosis of movement disorders is not uncommon. Therefore I’ve decided to share it through this medium. Some people will find value in it.

Below is a table from the article. In future posts, parts of the article will be shared, including the discussion, conclusions, and references by category.

A Table contrasting common and differentiating features of Essential Tremors and Parkinson's Disease
Table 1. Commonalities and Differences (from an unpublished article on Misdiagnosis and Missed Diagnosis of Parkinson’s Disease and Essential Tremor

 

 

 

 
Deep Brain Stimulation (DBS), Music, Parkinson's, prodromal, Research, Singing , , , , , , , Leave a comment

Me and My PD – 14 Sept 2024

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It’s been said that if you’ve met one person with Parkinson’s Disease (PD), then you’ve met one person with PD.

Today I saw a news segment about a guy who plays trombone, and how he had experienced a deterioration in his ability to play in the previous year. He was diagnosed with Essential Tremors (ET), also known as familial tremors or benign tremors. The point of the story was that he had opted for Deep Brain Stimulation (DBS), during which the patient is awake (at least part of the time), and that he played trombone during the operation.

I hope his physician got the diagnosis correct. As noted earlier in this blog, et-pd-is-there-is-or-is-there-aint-a-connection, a research paper was published that established a link between ET and PD: “LINGO1 rs9652490 is associated with essential tremor and Parkinson disease.” Having had essential tremors since my teenage years, I checked my DNA analysis and discovered that I did have that specific variation on the LINGO1 gene. As I’ve often remarked about PD research, this would have been good information to know 50 years ago.

I did remark a couple of times to my Movement Disorders Specialist’s team that I regretted not having asked to play the saxophone or guitar during my own DBS operation. To their credit, they attempted to fine tune my settings, but either due to lack of practice or progression of PD symptoms, I was not able to recover the picking and strumming skills I had back in 1997. And so it goes.

These days, I try to play on my keyboard as often as I can, but any attempt to follow an instructional program, or parse out simple pieces written for instruction (e.g., Bach’s selections from the notebook for Anna Magdalena, Bela Bartok’s pieces for children), soon devolve into loose jams on simple chord progressions, or attempts to recall, remember, and play some of my own simple songs with a minimum of egregious errors.

But I have promises to keep and chores to do before I sleep, so I will just end this with a selection from 1997, when I could play a little bit (self-taught). Unlike many of my songs, this one was not influenced by Bob Dylan.

You’re A Mystery To Me

#Essentialtremors #Parkinsonsdisease #music #DBS #idiopathic

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