Category Archives: Deep Brain Stimulation (DBS)

Deep Brain Stimulation (DBS), Essential Tremors, movement disorders, Parkinson's, Philosophy, prodromal, Research , , , , , , , , , , , , Leave a comment

Me and My PD – Misdiagnosis and Confirmation Bias

by

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.

_________________________

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.

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

Me and My PD – 14 Sept 2024

by

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

###

Deep Brain Stimulation (DBS), depression, Parkinson's, prodromal, Research, Reviews , , Leave a comment

ET & PD – is there is or is there ain’t a connection?

by

As a person who has had essential tremors ever since his teenage years, and a person who was diagnosed with Parkinson’s disease at the average onset age of 62 years, it was with great interest that the author reviewed the abstracts and full text open access PubMedCenter articles available on the topic.

The author can recall others (medical professionals included) who did not observe tremors, although this subject could feel the tremors within, during teenage years. During undergraduate studies, he once was told that his initial impression on a fellow college student looking to sublet a room was that of a “speed freak” (methamphetamine abuser to those unfamiliar with the term). At age 28, his future wife remarked on his trembling hands as he reached out to touch her cheek in a moment of intimacy. And at age 60, following several recurring episodes of depression and increasing tremors, he was treated for essential tremors for almost two years, beginning in 2010. Then, after having opted for Deep Brain Stimulation (DBS), and undergoing further testing for several months, a third symptom, rigidity, one of the four cardinal symptoms of PD, was observed, allowing the Movement Disorder Specialist to finally make a diagnosis of PD. Mind you, the four cardinal symptoms required to make the call haven’t changed since 1817, when James Parkinson published his Essay On The Shaking Palsy. In case you don’t  already know, they are Tremors, Postural Instability, Bradykinesia, and Rigidity.

On the other hand, it was only in 2009 that the study “LINGO1 rs9652490 is associated with essential tremor and Parkinson disease” came out online and published in print a few months later in 2010.  In which year, the observant reader will notice, was when this author began receiving treatments for essential tremors, finally diagnosed in late 2011 as Parkinson’s.

After a few articles reported similar results, a few negative results were reported, in part by one group of desk jockeys who conducted a meta-review and concluded that there was NO association between ET and PD.  On looking just briefly at the abstracts, one can see that those that found a positive connection and those that found no connection were looking at different populations. The positive association came from a European background, and those with no association came from a Chinese population sample.  Mix them all together and you get mixed results, which doesn’t mean that a person with a half European background (like myself) with this specific variation doesn’t have an increased risk of developing ET (P = 0.014) and Parkinson’s(P = 0.0003), as reported in the article noted above.

So who should I believe? A study that involved a sample in which the participants were similar in ethnic/DNA background to mine? Or a meta-review which concludes that the null hypothesis is true? Or my own brain and body, which began exhibiting strong tremors back in late teens to early twenties? And which became so severe by age 60  that I couldn’t carry a cup of coffee from the kitchen to the living room without going into extreme oscillations?

Those were rhetorical questions, by the way.

References:

Jiménez-Jiménez FJ, García-Martín E, Lorenzo-Betancor O, Pastor P, Alonso-Navarro H, Agúndez JA. LINGO1 and risk for essential tremor: results of a meta-analysis of rs9652490 and rs11856808. J Neurol Sci. 2012 Jun 15;317(1-2):52-7. doi: 10.1016/j.jns.2012.02.030. Epub 2012 Mar 17. PMID: 22425540.

Agúndez JA, Lorenzo-Betancor O, Pastor P, García-Martín E, Luengo A, Alonso-Navarro H, Jiménez-Jiménez FJ. LINGO1 rs9652490 and rs11856808 are not associated with the risk of Parkinson’s disease: results of a meta-analysis. Parkinsonism Relat Disord. 2012 Jun;18(5):657-9. doi: 10.1016/j.parkreldis.2011.09.005. Epub 2011 Sep 28. PMID: 21955595.

Lorenzo-Betancor O, Samaranch L, García-Martín E, Cervantes S, Agúndez JA, Jiménez-Jiménez FJ, Alonso-Navarro H, Luengo A, Coria F, Lorenzo E, Irigoyen J, Pastor P; Iberian Parkinson’s Disease Genetics Study Group Researchers. LINGO1 gene analysis in Parkinson’s disease phenotypes. Mov Disord. 2011 Mar;26(4):722-7. doi: 10.1002/mds.23452. Epub 2011 Jan 4. PMID: 21506150.

Wu YW, Rong TY, Li HH, Xiao Q, Fei QZ, Tan EK, Ding JQ, Chen SD. Analysis of Lingo1 variant in sporadic and familial essential tremor among Asians. Acta Neurol Scand. 2011 Oct;124(4):264-8. doi: 10.1111/j.1600-0404.2010.01466.x. Epub 2010 Dec 15. PMID: 21158743.

Zuo X, Jiang H, Guo JF, Yu RH, Sun QY, Hu L, Wang L, Yao LY, Shen L, Pan Q, Yan XX, Xia K, Tang BS. Screening for two SNPs of LINGO1 gene in patients with essential tremor or sporadic Parkinson’s disease in Chinese population. Neurosci Lett. 2010 Sep 6;481(2):69-72. doi: 10.1016/j.neulet.2010.06.041. Epub 2010 Jun 19. PMID: 20600614.

Clark LN, Park N, Kisselev S, Rios E, Lee JH, Louis ED. Replication of the LINGO1 gene association with essential tremor in a North American population. Eur J Hum Genet. 2010 Jul;18(7):838-43. doi: 10.1038/ejhg.2010.27. Epub 2010 Apr 7. PMID: 20372186; PMCID: PMC2987362.

Nica AC, Montgomery SB, Dimas AS, Stranger BE, Beazley C, Barroso I, Dermitzakis ET. Candidate causal regulatory effects by integration of expression QTLs with complex trait genetic associations. PLoS Genet. 2010 Apr 1;6(4):e1000895. doi: 10.1371/journal.pgen.1000895. PMID: 20369022; PMCID: PMC2848550.

Vilariño-Güell C, Wider C, Ross OA, Jasinska-Myga B, Kachergus J, Cobb SA, Soto-Ortolaza AI, Behrouz B, Heckman MG, Diehl NN, Testa CM, Wszolek ZK, Uitti RJ, Jankovic J, Louis ED, Clark LN, Rajput A, Farrer MJ. LINGO1 and LINGO2 variants are associated with essential tremor and Parkinson disease. Neurogenetics. 2010 Oct;11(4):401-8. doi: 10.1007/s10048-010-0241-x. Epub 2010 Apr 6. PMID: 20369371; PMCID: PMC3930084.

Wu Y, Wang X, Xu W, Liu W, Fang F, Ding J, Song Y, Chen S. Genetic variation in LINGO-1 (rs9652490) and risk of Parkinson’s disease: twelve studies and a meta-analysis. Neurosci Lett. 2012 Jul 26;522(1):67-72. doi: 10.1016/j.neulet.2012.06.018. Epub 2012 Jun 15. PMID: 22710005.

Jasinska-Myga B, Wider C. Genetics of essential tremor. Parkinsonism Relat Disord. 2012 Jan;18 Suppl 1:S138-9. doi: 10.1016/S1353-8020(11)70043-8. PMID: 22166413.

Bourassa CV, Rivière JB, Dion PA, Bernard G, Diab S, Panisset M, Chouinard S, Dupré N, Fournier H, Raelson J, Belouchi M, Rouleau GA. LINGO1 variants in the French-Canadian population. PLoS One. 2011 Jan 11;6(1):e16254. doi: 10.1371/journal.pone.0016254. PMID: 21264305; PMCID: PMC3019170.

Guo Y, Jankovic J, Song Z, Yang H, Zheng W, Le W, Tang X, Deng X, Yang Y, Deng S, Luo Z, Deng H. LINGO1 rs9652490 variant in Parkinson disease patients. Neurosci Lett. 2011 Jan 7;487(2):174-6. doi: 10.1016/j.neulet.2010.10.016. Epub 2010 Oct 15. PMID: 20951767.

Thier S, Lorenz D, Nothnagel M, Stevanin G, Dürr A, Nebel A, Schreiber S, Kuhlenbäumer G, Deuschl G, Klebe S. LINGO1 polymorphisms are associated with essential tremor in Europeans. Mov Disord. 2010 Apr 30;25(6):717-23. doi: 10.1002/mds.22887. PMID: 20310002.

Vilariño-Güell C, Ross OA, Wider C, Jasinska-Myga B, Cobb SA, Soto-Ortolaza AI, Kachergus JM, Keeling BH, Dachsel JC, Melrose HL, Behrouz B, Wszolek ZK, Uitti RJ, Aasly JO, Rajput A, Farrer MJ. LINGO1 rs9652490 is associated with essential tremor and Parkinson disease. Parkinsonism Relat Disord. 2010 Feb;16(2):109-11. doi: 10.1016/j.parkreldis.2009.08.006. Epub 2009 Aug 31. PMID: 19720553; PMCID: PMC2844122.

Deng H, Gu S, Jankovic J. LINGO1 variants in essential tremor and Parkinson’s disease. Acta Neurol Scand. 2012 Jan;125(1):1-7. doi: 10.1111/j.1600-0404.2011.01516.x. Epub 2011 Apr 7. PMID: 21470193.

Zimprich A. Genetics of Parkinson’s disease and essential tremor. Curr Opin Neurol. 2011 Aug;24(4):318-23. doi: 10.1097/WCO.0b013e3283484b87. PMID: 21734494.

Deep Brain Stimulation (DBS), depression, Maimonides, Parkinson's, prodromal, Research, The Meaning of Life , , , , , , , , , , ,

Moses Maimonides, James Parkinson, and me

by

Subscribe to continue reading

Subscribe to get access to the rest of this post and other subscriber-only content.

Deep Brain Stimulation (DBS), depression, Parkinson's, prodromal, Research, Reviews , , , Leave a comment

Low cholesterol levels – could be a biomarker for PD?

by

A couple of articles that look at cholesterol levels and PD.

Fu X, Wang Y, He X, Li H, Liu H, Zhang X. A systematic review and meta-analysis of serum cholesterol and triglyceride levels in patients with Parkinson’s disease. Lipids Health Dis. 2020 May 19;19(1):97. doi: 10.1186/s12944-020-01284-w. PMID: 32430016; PMCID: PMC7236933.

The results suggested that elevated serum levels of triglycerides (TG), low density cholesterol (LDL) and total cholesterol (TC) may be protective factors for the pathogenesis of PD.

And here’s another meta analysis that bottom lines the results in the title:

Hong X, Guo W, Li S. Lower Blood Lipid Level Is Associated with the Occurrence of Parkinson’s Disease: A Meta-Analysis and Systematic Review. Int J Clin Pract. 2022 Jun 9;2022:9773038. doi: 10.1155/2022/9773038. PMID: 35801143; PMCID: PMC9203242.

This meta review  looked at

  • total cholesterol (TC),
  • triglycerides (TG),
  • high-density lipoprotein cholesterol (HDL-C), and
  • low-density lipoprotein cholesterol (LDL-C).

Fifteen cohort studies with 9740 participants, including 2032 PD patients and 7708 controls were analyzed, and the analysis found that lipid levels in the PD patients was significantly lower than that of healthy controls. So dyslipidemia might have a predictive value.

As a Person With PD (PwP), this sort of information could have been useful, say, oh, between 50 or 60 years ago. Of course, it would have taken general practitioners with a broad knowledge of factors affecting the prodromal symptoms and signs of PD to pick up on it. (And that information wasn’t available at that time).

As it so happened, I had essential tremors, and could feel resting tremors oscillating away, even though they were not visible to the human eye. And other prodromal symptoms were present, too, and at an early age. Fortunately, I did not have the LRRK or PARK gene variations that cause early onset PD that can not be denied (Michael J. Fox’s case comes to mind). Unfortunately, my particular set of symptoms did not result in an actual diagnosis of PD until after I had been retired early due to one of my other prodromal symptoms (MDD) put me on disability leave for over 9 months, and I was unable to hold down a steady job for a couple of years.  Fortunately, the Social Security Administration provided me with retroactive disability benefits to the day following the date the insurance company gave up on trying to recoup their losses by representing my case to the OASDI. Fortunately, I have been able to find folks who have supported me through the years, intellectually and socially, as my continuing journey with PD has become a larger part of my life.

Perhaps the future of medicine lies in something like the application of IBM’s Big Blue computer (or other advanced Artificial Intelligence systems) to assimilating the huge (not just big) data residing in the NIH and other medical libraries, so that correlations among various signs could be identified and point to diagnostic criteria and effective treatment modalities, so that until there is a cure for Parkinson’s (and other diseases), we can do what we can to identify the probability of an eventual diagnosis (provided decent medical information and observations) and then to  defer or delay and to mitigate the symptoms.

And until then, I will do my best to forgive those who have caused me harm, whether through omission or commission, while asking forgiveness of those against whom I have “trespassed,” to use the word in the KJV.

(Didn’t mean to take an ethical/religious tangent at the end, but there it is. I’ve said too much, I haven’t said enough… I was sentenced to twenty years of boredom, for trying to change the system from within…[insert your favorite poplar song phrase here]).

###

Dance, Deep Brain Stimulation (DBS), Research, Reviews, Verbal Fluency (VF) , , , , Leave a comment

Verbal fluency, DBS, and parkinson’s

by

How many animals can you name in one minute?

Wait one year, and do the same test. 

How did you do? better or worse? Basically, that’s what this post is about.

Several articles in this post (all free PubMedCentral articles):

  1. Changes in Verbal Fluency in Parkinson’s Disease
  2. Semantic and phonemic verbal fluency in Parkinson’s disease: Influence of clinical and demographic variables
  3. The Verbal Fluency Decline After Deep Brain Stimulation in Parkinson’s Disease: Is There an Influence of Age?
  4. Worsening of Verbal Fluency After Deep Brain Stimulation in Parkinson’s Disease: A Focused Review
  5. Striatal volume is related to phonemic verbal fluency but not to semantic or alternating verbal fluency in early Parkinson’s disease

The first two studies looked at verbal fluency as measured by counting the number of animals one could name during a timed minute. Basically, the further along folks were in the stage of the disease, the lower their verbal fluency, and the lower their quality of life. Analysis indicated that several other factors were involved, such as depression, age, and executive functioning. People with Parkinson’s (PWP) with higher verbal fluency scores had better quality of life and lower caregiver burden, as measured by scores on standardized rating scales such as the PDQ-29 and The Modified Caregiver Strain Index (MCSI)

In the  second pair of articles, The first suggests that age might be accountable for the reported decline in Verbal Fluency (VF) following Deep Brain Stimulation (DBS) surgery, and provides data to support that hypothesis. The second article is a review of the literature, which notes that the effect seems to be moderate, and that studies to find the reason for the observed decline in VF have been inclusive overall.

Based on recent and earlier meta-analyses, there is reliable evidence for a worsening of both phonemic and semantic VF after DBS. This primarily pertains to STN-DBS…  …disease progression does not seem to be able to account for the worsening of VF in DBS patients. Also, DBS-related reductions in dopaminergic medication (mainly in STN-DBS patients) cannot account for the VF decline. …it seems that either surgery or stimulation itself or both together in combination with the electrode positions are driving factors. However, the evidence in this relation is inconclusive and sparse…. …recommendations for future studies on VF include optimizing study designs to include both ON and OFF stimulation as well as baseline measures, calculating reliable change indices (RCI) for neuropsychological results, and acquiring diffusion-weighted MRI on patients for tractography of cortical and subcortical connections to and from STN/GPi

The fifth article reports on brain imaging studies which indicate that the verbal fluency decline is related to different areas of the brain for VF and semantic fluency.

The fact that phonemic fluency, but not semantic or alternating fluency, was associated with caudate gray matter volume at early stage PD suggests that different fluency tasks rely on different neural substrates, and that language networks supporting semantic search and verbal-semantic switching are unrelated to brain gray matter volume at early disease stages in PD.

Since previous research on dance have indicated increased gray matter volume in dancers (somewhere earlier in this blog, search on “dance” to find it); this would suggest that one way to combat the decline in VF is to dance, preferably in classes that are specifically geared towards Parkinson’s symptoms.

At least that’s my take-away from these articles. Your mileage may vary.

###