Living with a misdiagnosis… (continued)

In two previous posts of part of this unpublished article we provided the results in the form of a table, which listed diagnostic criteria and some common features and symptoms of Essential Tremors (ET) and Parkinson’s Disease (PD), and the basic Abstract section.

Today, we will look at the Discussion section, beginning with Quality of Life (QOL) impacts, and the Conclusions, listed as a half dozen null hypotheses.

Discussion:

The subject reports the following impacts on QOL:

· Failure to correctly identify, diagnose, and treat underlying conditions in a timely manner resulted in career termination prior to 60 years.

· Human interactions, both person to person and in public speaking, were affected by presence of hand tremors as well as vocal tremors.

· Open disclosure of diagnosis affected interpersonal relations of all kinds – some for better, some not.

· Interactions and side effects of various medications and treatments. (Risks from DBS and chronic administration levodopa are of concern (Vyavahare, S, et al., (2025)), including:

· Mood disorders,

· Balance, gait, and fall risk issues,

· Excessive daytime somnolence,

· Weight gain and loss,

· Libido and sexual functioning,

· Functions of organs such as kidneys and liver.

· General anhedonia and dysphoria.

· Financial impacts due to costs of medical insurance, medical services, medications and treatments, and diminished earning ability

The subject asks the following questions regarding QOL:

· How does one measure the loss of over a decade of one’s life due to a misdiagnosis?

· How does one calculate the loss of earnings and savings spent to pay for DBS surgery and follow up treatments?

· How does one calculate the hours spent on purchasing, tracking, and dispensing medications and supplements over a decade?

· Which of the numerous falls over the years (including a fractured femur) may have been avoided if he had not been misdiagnosed, mistreated, and over medicated?

The subject admits his situation could have been worse: misdiagnosis or missed diagnosis did not result in death.

The subject also admits that following the misdiagnosis of PD after seeking treatment for ET, he read as much research as possible, and noted the multiple prodromal and other risk factors in his history. He embraced the diagnosis of PD, exhibiting his own confirmation bias, and failed to fully explore the research on ET and ET concurrent with PD. Failure to seek or to recommend a second opinion regarding diagnosis and treatment with DBS is a responsibility shared by both patient and physician.

Factors affecting Early, Timely, Accurate, and Effective Diagnoses and Treatments

The stigma of being “sick” in a society which values the lower two of Moses Maimonides’s four ways in which man seeks perfection, can have negative effects. (The four types of perfection are (1.) wealth, titles, and power over others, (2.) physique and personal appearance, (3.) ethical virtue (social behavior to benefit others), and (4.) development of rational virtue (logic, science, and metaphysics) (Maimonides, The Guide of the Perplexed, (1952) translated by Rabin, C., abridged version by Guttman, J,)

The lowest of these is the “perfection of wealth.” In a system in which health care is not considered a basic human right, and ethical virtue does not assist in the attainment of amassing of wealth, some people are drawn to careers related to medicine as a means to attain perfection of wealth.

Consider the following data:

· In 2024 alone, pharmaceutical and health products companies reported over 16 million transfers or payments totaling $13.18 Billion to health care providers (https://openpaymentsdata.cms.gov/about accessed 20 September, 2025).

· Over $388 Million was spent to lobby on behalf of these companies during the year 2024, with over $226 Million reported so far in 2025 (https://www.opensecrets.org/industries/lobbying?cycle=2024&ind=H04 accessed 21 September, 2025).

· Recorded contributions to political campaigns from the industry in 2023-2024 were over $86 Million (https://www.opensecrets.org/industries/totals?cycle=2024&ind=H04 accessed 21 September 2025).

Note: All of the above funds were legally spent and reported. How much of the $13.8 Billion total was in the form of discounts or free services to patients is not known. Unknown whether any of the money spent lobbying and donating to political entities reduced the cost of healthcare for patients with Parkinson’s Disease, or any individual patient’s medical cost burden.

In addition to the seductive influence of wealth on diagnosis and treatment options (such as DBS and new versions of carbidopa-levodopa medications), physicians may also delegate the actual provision of services to others under their supervision.

Some neurologists may, in the face of what has been dubbed a “Parkinson’s Pandemic” (Dorsey,R. & Okun, M. (2025)), expand their practice beyond their actual areas of expertise, whether motivated by the attainment of wealth or a genuine attempt to provide services in an area in which there are too few MDSs to meet the needs of the population.

The bottom line IS the bottom line. The health system is not focused on the needs of patients, but on the profits required to provide investors with the best possible return on investment. Reflecting on the QOL issues, it may be the case that an investment in providing services to patients would provide a greater return on investment in the long run than in considering people to be as fungible as funds.

Conclusions:

Null Hypotheses and expected conclusions are presented based on reviewed research articles and abstracts, primarily from PubMed Central (https://pmc.ncbi.nlm.nih.gov/).

Null hypothesis 1:

· PD and ET are distinct conditions and easily diagnosed by General Practitioners using the current diagnostic criteria.

Conclusion:

· Expect Rejection of Null Hypothesis (ERNH). Initial diagnoses of ET, PD, and other movement disorders are well below 100% in initial clinical presentations. (Joutsa et al., 2014, Adler et al. 2014, Khan et al. 2024)

Null hypothesis 2:

· PD and ET do not share any common features or symptoms.

Conclusion:

· (ERNH). Multiple common features and symptoms (See Table 1).

Null hypothesis 3:

· PD and/or ET are wholly due to genetic factors.

Conclusion:

· (ERNH). ET and PD cases are heterogenous in etiology. (See Table 1).

Null hypothesis 4:

· PD and/or ET are simply due to natural aging processes.

Conclusion:

· (ERNH). Age increases risk, but is not determining factor (See Table 1).

Null hypothesis 5:

· Interactions with medications, environmental factors, and genetics do not need to be considered when diagnosing or treating ET or PD.

Conclusion:

· (ERNH). Criteria for ET specifically notes certain drug interactions as a factor for exclusion. (Bhatia et al., 2018). (However, MDS criteria do not include genetics (presence in family members) as a criterion for diagnosis of ET.) Recommendation: MDS should consider adding family history and DNA analyses to diagnostic criteria for ET and PD.

Null hypothesis 6:

· History of ET diagnosis is unrelated to progression of PD symptoms following PD diagnosis.

Conclusion:

· (ERNH). ET history in patients with PD is associated with a benign prognosis with slower motor and non-motor symptoms progression.” (Ou, R.,et al., 2020; Cutrona et al., 2025).

Recommendations and implications for practice and research:

The low accuracy of initial diagnosis for PD should be noted when conducting research, reviews and metareviews. Although several initiatives to develop algorithms to predict risks for developing PD have been created, these mathematical models are vulnerable to missing or undocumented data, which reduces the accuracy of these tools.

Further longitudinal investigation to include subjects with

1. Existing diagnosis of ET to identify those who

1.1. Later develop PD (ET + PD),

1.2. Do not later develop PD (ET only), and

1.3. Subjects who do not have a diagnosis of either ET or PD (control group)

2. Investigate subjects with current family histories of

2.1. ET,

2.2. ET+PD, and

2.3. absence of either ET or PD.

3. Continue studies into relationship between tremors and disease progression.

4. Include DNA analysis and broaden genes included in correlation, as has been initiated.

Implications for practice:

Clinician education and patient education are in need of greater effort and attention in order to improve early identification and treatments.

Clinicians and Physicians

· Clinicians need to be conscious of and defend against confirmation bias which could lead to misdiagnosis and missed diagnoses, impacting the patient’s Quality Of Life or mortality, including inviting patients to seek

· Physicians and clinicians need to exercise caution to avoid iatrogenic symptoms, toxic medicine interactions, and other complications.

· Physicians need to put patient needs at the center of their practice.

· Or, in other words, FIRST, DO NO HARM (Consider hanging as a reminder poster in all physicians’ offices)?

• Patients (and caregivers) need to 

  • Seek second opinions before major operations such as DBS,
  • Educate self regarding conditions and treatments,
  • Check for side effects of treatments
  • Take responsibility to ensure all members of the medical care team are advised and kept up to date on treatments

More research into shared and concurrent symptoms of related movement disorders is needed, given the difficulty of diagnosis and concurrence of many prodromal and post onset symptoms

End of this post.

References may be posted later. Maybe not.

Moses Maimonides, James Parkinson, and me

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Depression, Parkinson’s Disease, Cannabis, suicidal ideation, and more…

There are two types of depression, we are sometimes told: Depression, and bipolar disorder. To my way of thinking, at least, ALL depressions are bipolar in nature. It’s just that those who don’t have the wild swings of high to low, but just from “normal” to low, aren’t considered to be be bipolar. (The report on Cannabis and suicide doesn’t mention PD, but it seemed close enough to the topic of depression that I included it.

But what do I know? I’m not a trained psychiatrist or psychologist.Here’s some articles from some folks who seem to have expertise in the area:

First: find out whether someone with PD is depressed.

Williams JR, Hirsch ES, Anderson K, Bush AL, Goldstein SR, Grill S, Lehmann S, Little JT, Margolis RL, Palanci J, Pontone G, Weiss H, Rabins P, Marsh L. A comparison of nine scales to detect depression in Parkinson disease: which scale to use? Neurology. 2012 Mar 27;78(13):998-1006. doi: 10.1212/WNL.0b013e31824d587f. Epub 2012 Mar 14. PMID: 22422897; PMCID: PMC3310315.

Conclusions: The Geriatric Depression scale (GDS-30) may be the most efficient depression screening scale to use in PD because of its brevity, favorable psychometric properties, and lack of copyright protection. However, all scales studied, except for the UPDRS Depression, are valid screening tools when PD-specific cutoff scores are used. (emphasis added).

And guess what? Comorbidities need to be considered, and depression rating scales don’t really tease out one of the more common ones. 

Calleo J, Williams JR, Amspoker AB, Swearingen L, Hirsch ES, Anderson K, Goldstein SR, Grill S, Lehmann S, Little JT, Margolis RL, Palanci J, Pontone GM, Weiss H, Rabins P, Marsh L. Application of depression rating scales in patients with Parkinson’s disease with and without co-Occurring anxiety. J Parkinsons Dis. 2013;3(4):603-8. doi: 10.3233/JPD-130264. PMID: 24275604.

Conclusions: Co-occurring anxiety disorders do not impact performance of depression rating scales in depressed PD patients. However, depression rating scales do not adequately identify anxiety disturbances alone or in patients with depression.

Why should we care? Because depression has an adverse effect on daily living for those with PD.

Pontone GM, Bakker CC, Chen S, Mari Z, Marsh L, Rabins PV, Williams JR, Bassett SS. The longitudinal impact of depression on disability in Parkinson disease. Int J Geriatr Psychiatry. 2016 May;31(5):458-65. doi: 10.1002/gps.4350. Epub 2015 Aug 18. PMID: 26284815; PMCID: PMC6445642.

Objective: Depression in Parkinson disease (PD) is a common problem that worsens quality of life and causes disability. However, little is known about the longitudinal impact of depression on disability in PD. This study examined the association between disability and DSM-IV-TR depression status across six years.

Results: A total of 43 participants were depressed at baseline compared to 94 without depression. Depressed participants were more likely to be female, were less educated, were less likely to take dopamine agonists, and more likely to have motor fluctuations. Controlling for these variables, symptomatic depression predicted greater disability compared to both never depressed (p = 0.0133) and remitted depression (p = 0.0009). Disability associated with symptomatic depression at baseline was greater over the entire six-year period compared to participants with remitted depressive episodes or who were never depressed.

Conclusions: Persisting depression is associated with a long-term adverse impact on daily functioning in PD. Adequate treatment or spontaneous remission of depression improves ADL function. (emphasis added).

Teamwork is needed. If the person with PD can’t be their own advocate, then someone needs to help coordinate and communicate.

Taylor J, Anderson WS, Brandt J, Mari Z, Pontone GM. Neuropsychiatric Complications of Parkinson Disease Treatments: Importance of Multidisciplinary Care. Am J Geriatr Psychiatry. 2016 Dec;24(12):1171-1180. doi: 10.1016/j.jagp.2016.08.017. Epub 2016 Sep 3. PMID: 27746069; PMCID: PMC5136297.

Abstract

Although Parkinson disease (PD) is defined clinically by its motor symptoms, it is increasingly recognized that much of the disability and worsened quality of life experienced by patients with PD is attributable to psychiatric symptoms. The authors describe a model of multidisciplinary care that enables these symptoms to be effectively managed. They describe neuropsychiatric complications of PD itself and pharmacologic and neurostimulation treatments for parkinsonian motor symptoms and discuss the management of these complications. Specifically, they describe the clinical associations between motor fluctuations and anxiety and depressive symptoms, the compulsive overuse of dopaminergic medications prescribed for motor symptoms (the dopamine dysregulation syndrome), and neuropsychiatric complications of these medications, including impulse control disorders, psychosis, and manic syndromes. Optimal management of these problems requires close collaboration across disciplines because of the potential for interactions among the pathophysiologic process of PD, motor symptoms, dopaminergic drugs, and psychiatric symptoms. The authors emphasize how their model of multidisciplinary care facilitates close collaboration among psychiatrists, other mental health professionals, neurologists, and functional neurosurgeons and how this facilitates effective care for patients who develop the specific neuropsychiatric complications discussed.

And, with a cautionary reminder that correlation does not equal causation, and that the new release about the referenced article comes from the Council on Drug Abuse: (which could possibly have a conflict of interest regarding the results of the data):

B Han, WM Compton, EB Einstein, ND Volkow. Associations of Suicidality Trends With Cannabis Use as a Function of Sex and Depression Status(link is external). JAMA Network Open. DOI: 10.1001/jamanetworkopen.2021.13025 (2021).

An analysis of survey data from more than 280,000 young adults ages 18-35 showed that cannabis (marijuana) use was associated with increased risks of thoughts of suicide (suicidal ideation), suicide plan, and suicide attempt. These associations remained regardless of whether someone was also experiencing depression, and the risks were greater for women than for men. The study published online today in JAMA Network Open and was conducted by researchers at the National Institute on Drug Abuse (NIDA), part of the National Institutes of Health.

“While we cannot establish that cannabis use caused the increased suicidality we observed in this study, these associations warrant further research, especially given the great burden of suicide on young adults,” said NIDA Director Nora Volkow, M.D., senior author of this study. “As we better understand the relationship between cannabis use, depression, and suicidality, clinicians will be able to provide better guidance and care to patients.”

On the other hand, it could be that young adults are depressed or suicidal because they live in a world in which constant war is being fought, in which war profiteering is not a crime, in which they see politics reduced not to a game of collaboration and mutual benefit, but a zero sum game in which the winner takes all. Perhaps they are depressed over the failure of the governments to address the mounting scientific evidence that climate “change” is resulting in climate chaos, and yet the governments of the world, funded by the fossil fuel industries, are “rearranging deck chairs on the Titanic” while the media band plays on. I could go on, but I won’t.

I used to be suicidal, but my life has changed. 

More to the point:

The National Suicide Prevention Lifeline is available today, providing suicide prevention and mental health crisis assistance at 1-800-273-8255 and through online chats. 988 is not a nationwide calling code right now. The Veterans Crisis Line is available today, providing Veteran specific suicide prevention and crisis assistance at 1 800 273 8255 (Press 1), by texting 838255, and through online chats at veteranscrisisline.net. On July 16, 2020, the FCC adopted rules to establish 988 as the new, nationwide, easy-to-remember 3-digit phone number for Americans in crisis to connect with suicide prevention and mental health crisis counselors.

And a final note: one of the main defenses against depression is activity is physical activity and human or non-human interaction. So get out here and run a mile, walk along a nature trail, play some music, call a friend, join a group or club, hug a tree, kiss a girl/boy, and get connected with the world we live in. 

You’ll feel better if you do.

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Music on the brain

 

Why do we like some kinds of music but not others?

Back in college, Jerry Coker (who taught jazz improvisation, said that we tended to like music that was not entirely predictable, but that a certain level of surprise increased our enjoyment of jazz. Music that was too unpredictable led to diminished enjoyment. Now, a study has been done that mathematically analyzed people’s enjoyment of musical snippets, and basically confirmed what Jerry taught us. Surprise us every now and then, but don’t make us feel like we’re stupid and can’t guess the next note that’s coming along.

Here’s the article with a reference and link to the original research (if you can afford it): The brain’s favorite type of music

Dopamine’s role in music enjoyment.

In this study, researchers looked at people’s responses to music under three separate conditions. One group received levodopa, another received risperidone, a dopamine antagonist, and a third group received a placebo. Folks in the levodopa group reported and were recorded as having higher levels of enjoyment, and those taking the antagonist, lower levels of enjoyment. Each group[ went through all the conditions, separated by a week in between sessions. The results clearly indicate that dopamine is the brain is related to musical pleasure. Now, if  playing and singing music promote an increase of dopamine in the brain, we have a prescription for Parkinson’s Disease (and depression) that can’t be beat (although it can be counted off).

Dopamine role in musical pleasure    

the actual research article which appears to be available in its entirety online: Dopamine modulates the reward experiences elicited by music

 

 

 

I would definitely volunteer…

For a longitudinal followup study. The longer the better. This is the sort of study you can sink your teeth into…

Food for thought, indeed.

Dark chocolate consumption versus depressive symptoms

Well, the results aren’t conclusive, but apparently the theory is that dark chocolate contains Flavonoids and possibly activates the endocannabinoid receptors in the brain, which make folks feel good instead of angry and hostile or depressed.

And chocolate is still legal in all 50 states of the USA.

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