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.

Exercise is good medicine

As several of my Power for Parkinson’s instructors are fond of repeating “Motion is the Lotion.”

As late as 2018, the society for Movement Disorders (or International Parkinson’s and Movement Disorder Society, to be more exact) had stated that there was insufficient evidence that exercise had any effect on the progression of the disease or its symptoms. (The exact reference can be found in an earlier post in which I included a presentation with references to studies linking the effects of music and dance as the best of the best forms of exercise (it goes without saying, however, that the best exercise is the one that you yourself find and enjoyable and reinforcing, and will therefore actually continue to do).)(Although I just said it, in contradiction to the previous sentence.)(Come to think of it, I should update that presentation with more current citations…)

Which brings us up to 2025, just seven years later, in which a review article concludes that:

These findings provide strong evidence that exercise, even light intensity, benefits general cognition, memory and executive function across all populations, reinforcing exercise as an essential, inclusive recommendation for optimising cognitive health.” (Singh B, Bennett H, Miatke A, et al, Effectiveness of exercise for improving cognition, memory and executive function: a systematic umbrella review and meta-meta-analysis, British Journal of Sports Medicine Published Online First: 06 March 2025. doi: 10.1136/bjsports-2024-108589

Results 133 systematic reviews (2,724 RCTs and 258 279 participants) were included. Exercise significantly improved general cognition (SMD=0.42), memory (SMD=0.26) and executive function (SMD=0.24). Memory and executive function improvements from exercise were greater for children and adolescents than for adults and older adults. Those with attention-deficit/hyperactivity disorder exhibited greater improvement in executive function than other populations. Effects were generally larger for low- and moderate-intensity interventions. Shorter interventions (1–3 months) and exergames (video games that require physical movement) had the largest effects on general cognition and memory. Findings remained statistically significant after excluding reviews rated as low and critically low quality.” (Emphasis added)

For the non-nerds out there, the review has also been been reported as Exercise of Any Kind Boosts Brain Power At Any Age in the Medical Express News by the University of South Australia.

In addition to several quotes from the lead author, Dr. Singh, the article mentioned Senior researcher Professor Carol Maher, who said exercise should be encouraged to boost cognitive health across all ages and fitness levels.

Cognitive decline and neurodegenerative disease are growing global health concerns, according to Professor Maher.

The review, which included over a quarter of a million subjects, presented compelling evidence that exercise should be integrated into health care and education settings to promote cognitive health.

Even small amounts of exercise can improve memory and brain function—especially for those at higher risk—means exercise should be included in clinical and public health guidelines.

You don’t maintain good cognitive health on a diet of hamburgers and diet soda, staying up late and sleeping until noon, one might conjecture. Riding around a golf course on a golf cart doesn’t exactly fit the description of the types of exercise reviewed in this study.

And, as fitting such an occasion, I’ll close out with a self-serving rendition of a “Parkinson’s Parody” of a song written by Christine McVie, originally. performed by Fleetwood Mac, and made even more famous by former President Bill Clinton’s campaign in the late 20th Century:

#Parkinson’s #PowerForParkinson’s #Reviews #Exercise #Cognitive #Memory #ExecutiveFunction #BenefitsOfExercise

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Off to see the wizards, of OT and PT, oh my!

And where would we be without Occupational Therapists (OTs) and Physical Therapists (PTs)? Probably still in need of skillful psychiatrists. Which is a short way of saying that physical health and mental health are closely linked. “Fitness for Mind and Body,” as the slogan for Power for Parkinson’s succinctly says it.

I just received, in my full of junk mail inbox, a link to an article that lays out the differences and specific tasks of OT and PT:  Occupational and Physical Therapy – What’s the diff?

The key takeaways are here:

  • Occupational therapy (OT) focuses on helping people with injuries, illnesses, or disabilities learn necessary skills while physical therapy (PT) focuses on improving mobility, strength, and flexibility after illnesses, trauma, or medical procedures.
  • Occupational therapists (OTs) assist patients with a wide range of day-to-day tasks such as eating, bathing, or getting dressed (and much more), regardless of the health condition, injury, or trauma that may have affected their skills.
  • Physical therapists (PTs) treat conditions, injuries, or trauma that cause reduced mobility, pain, and movement problems, helping patients reduce pain, regain strength, and increase flexibility after surgeries, trauma, or neurological conditions such as Parkinson’s disease. (bold emphasis added)

I had the privilege (?!) of receiving services from both OTs and PTs within the past few years, and can attest to the skills they have and how they can improve one’s enjoyment of the tasks Of Daily Living (ODL).

May you never need their services, but if you do… do it!

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The Healing Power of Nature on Human Health

Much has been written on the positive impact that exposure to nature has on general well-being, physical, and mental health. And yet, it seems that developers have not gotten the message. Why, I do not know. Maybe they are not aware of the research on the health benefits of nature. If not, here is some material to share.

A website post and two reviews, from most recent to next (within past five years):

Benefits of Nature Experience from Canada, posted in April 2024, lists the following benefits:

  • Attention: Our attention is a limited resource and it can become ‘fatigued’ throughout the day. Nature has been shown to restore attention and our ability to concentrate (Mason et al., 2022). Nature has also been found to reduce symptoms of Attention-Deficit/Hyperactivity Disorder (ADHD) (Faber Taylor & Kuo, 2009).
  • Mood: Nature improves mood and makes people feel happier (Neill et al., 2019). There is evidence that nature exposure can improve symptoms of depression (Berman et al, 2012).
  • Self-regulation: Nature helps us feel calmer and less irritable. This means that we are better able to control our impulses (Beute & de Kort, 2014; Weeland et al., 2019).
  • Stress: Nature reduces symptoms of anxiety, physical stress, and heart rate. It also helps us feel more relaxed (Shuda et al., 2020).
  • Social: Nature tends to increase generosity, cooperation, and our sense of social connection (Arbuthnott, 2023; Weinstein et al., 2009).

Impact of Nature on Human Health. An open access article, published in 2022:

this review has documented the increasing body of evidence in support of [nature-based-interventions] NBIs as effective tools to improve mental, physical, and cognitive health outcomes, and highlighted key factors that improve engagement with the natural world. [bracketed explanation of acronym inserted from elsewhere in the article]. Emphasis added.

And, finally, from 2021, another open access review, Association between Nature Exposure and Health, concluded that:

 We assessed the strength of evidence from experimental and observational studies and found evidence for associations between exposure to nature and improved cognitive function, brain activity, blood pressure, mental health, physical activity, and sleep. Evidence from experimental studies suggested protective effects of exposure to natural environments on mental health outcomes and cognitive function. Cross-sectional observational studies provide evidence of positive associations between exposure to nature, higher levels of physical activity and lower levels of cardiovascular disease. Longitudinal observational studies are starting to assess the long-term effects of exposure to nature on depression, anxiety, cognitive function, and chronic disease. Limitations and gaps in studies of nature exposure and health include inconsistent measures of exposure to nature, knowledge of the impacts of the type and quality of green space, and the health effects of the duration and frequency of exposure among different populations (e.g., adults, children, historically marginalized).

Reminds me of John Sebastian’s tune,  Daydream.  And also that I should take a walk outside about now…

2024-10-20-Monarch-IMG_9401

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Me and My PD – 14 Sept 2024

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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Music, music music (and exercise)

Dial the wayback machine to 2021, where this digital commons paper from Sacred Heart University on Influence and Effect of Music on Exercise  By Kendall Stewart appeared.

… Lack of adherence to exercise and physical activity, and related programs, is correlated with absence of motivation and enjoyment. Research has proven the presence of music, during physical activity, to be a strong motivator and linked to increased enjoyment, thus increasing exercise adherence. The purpose of this essay is to compile research in order to analyze and explain how the presence of music during physical activity increases mood and affective state of mind to bring about increased adherence and motivation as well as describe how individuals feel as though they are doing less work/exercising less when listening to music while being physically active. In addition, … examine the effect that different music genres, speeds, paces, and preferences have on exercise performance, enjoyment and adherence. (emphasis added).

Among the citations are:

de Dreu MJ, van der Wilk ASD, Poppe E, Kwakkel G, van Wegen EEH. Rehabilitation,
exercise therapy and music in patients with Parkinson’s disease: A meta-analysis of the
effects of music-based movement therapy on walking ability, balance and quality of life.
Parkinsonism & Related Disorders. 2012;18(Suppl 1):S114-S119. doi:10.1016/S1353-
8020(11)70036-0

which also refers to:

Goodwin VA, Richards SH, Taylor RS, Taylor AH, Campbell JL. The effectiveness of exercise interventions for people with Parkinson’s disease: a systematic review and meta-analysis. Mov Disord. 2008 Apr 15;23(5):631-40. doi: 10.1002/mds.21922. PMID: 18181210.

Evidence supported exercise as being beneficial with regards to physical functioning, health-related quality of life, strength, balance and gait speed for people with PD. There was insufficient evidence support or refute the value of exercise in reducing falls or depression.

On the topic of music and PD, we have:

Poliakoff, E., Bek, J., Phillips, M., Young, W. R., & Rose, D. C. (2023). Vividness and Use of Imagery Related to Music and Movement in People with Parkinson’s: A Mixed-methods Survey Study. Music & Science, 6. https://doi.org/10.1177/20592043231197919

excerpts from the abstract (as always, emphasis added):

… Music is used in interventions for people with Parkinson’s, either to pace movements, or as an integral element of activities such as dance. This study explored self-reported vividness of two forms of imagery – motor imagery evoked by music and auditory (including musical) imagery – in people with Parkinson’s, and whether and how they use these types of imagery in everyday life.

Participants (N = 199) completed:

(i) vividness ratings of visual and kinesthetic music-evoked motor imagery,

(ii) vividness ratings of auditory imagery, and

(iii) ratings and open questions about their everyday use of these types of imagery.

…  <20% reported actively using music to support motor imagery in daily activities. In contrast, participants reported a broad range of contexts and uses for musical imagery (imagined music), from supporting movement (e.g., walking or exercise) to emotion regulation, and concentration.

Correlational analyses associated vividness of music- evoked motor imagery with an urge to dance and musical training, while the use of musical imagery was associated with singing ability.

A minority of participants reported not experiencing either motor or musical imagery, suggesting that interventions based on imagery may not be suitable for all.

even participants with more severe motor symptoms reported experiencing and using both types of imagery, indicating promise for their strategic use at different stages of Parkinson’s. … musical and motor imagery have the potential to support rehabilitation strategies for Parkinson’s, either separately or in combination.

Not the “hardest” scientific evidence there is, but hey, Einstein (a guy who only has to be referred to by his surname, and we all know who were talking about) reported that he did his though experiments using visual imagery, and only later (and with much labor) worked out the math. (I believe the reference can be found in a book “The Act of Creation” by Arthur Koestler, if memory serves. As Einstein reportedly said, you can always look it up).

How to end this post on music and Parkinson’s Disease? Rather than submit one of my own YouTube videos, how about one from another person whose first name alone is sufficient to identify him:

Elvis

Do you wanna dance?

Costa V, Suassuna AOB, Brito TSS, da Rocha TF, Gianlorenco AC. Physical exercise for treating non-motor symptoms assessed by general Parkinson’s disease scales: systematic review and meta-analysis of clinical trials. BMJ Neurol Open. 2023 Oct 4;5(2):e000469. doi: 10.1136/bmjno-2023-000469. PMID: 37808516; PMCID: PMC10551973.

This study was a systematic review and meta-analysis.  Like many such desk reviews and meta-analyses, it winds up, in layperson’s terminology, comparing apples and oranges and pears and papayas and tangerines and dragon fruit and kiwis to each other. Treatments included “multimodal, aerobic, resistance, dance, conventional physical therapy and other types.” Five studies apparently were vulnerable to bias (in favor of the treatment being studied, one would suppose). They did conclude that, after sifting the studies down to eight, that aerobic exercise had a stronger effect than conventional exercise on non-motor symptoms. This is in conformance with other reviews that I have read (or read the abstracts of) in the past.

And then we have this study, which might have been kicked out due to possibility of bias, or maybe it wasn’t published early enough to be included.

Physical activity based on dance movements as complementary therapy for Parkinson’s disease: Effects on movement, executive functions, depressive symptoms, and quality of life
Duarte JdS, Alcantara WA, Brito JS, Barbosa LCS, Machado IPR, et al. (2023) Physical activity based on dance movements as complementary therapy for Parkinson’s disease: Effects on movement, executive functions, depressive symptoms, and quality of life. PLOS ONE 18(2): e0281204. https://doi.org/10.1371/journal.pone.0281204

Methods used were described as follows:

13 individuals with PD (Hoehn & Yahr I-III, MDS-UPDRS 67.62 ± 20.83), underwent physical activity based on dance movements (2x week for 6 months). Participants were assessed at baseline and after 6 months on movement (POMA, TUG and MDS-UPDRS Part III), executive function (FAB), depressive symptoms (MADRS), quality of life (PDQ-39), and severity of PD (MDS-UPDRS TOTAL).

The results were:

significant improvement in the movement (balance and gait) by the POMA test, p = 0.0207, executive function by the FAB test, p = 0.0074, abstract reasoning and inhibitory control by the FAB, Conceptualization test, p = 0.0062, and Inhibitory Control, p = 0.0064, depressive symptoms assessed by the MADRS test significantly reduced, p = 0.0214, and the quality of life by the PDQ-39 had a significant increase after the intervention, p = 0.0006, showed significant improvements between the pre-and post-intervention periods of physical activity based on dance movements.

The conclusions were obvious:

Physical activity based on dance movements contributed to significant improvements in movement (balance and gait), executive functions, especially in cognitive flexibility and inhibitory control, and the quality of life too. Sensorimotor integration, most cognitive processing and social skills may have contributed to the results.

Personally, I have to wonder whether inhibitory control and executive functions apply to my individual results, based on feedback from others, but it could be that I just need to keep on dancing more and worry less about what other folks think.

For nerds like myself, clicking on the following link will get you a list of similar articles published within the past five years (2019 – 2024)  available with free full text.

So, to reiterate the title of this post:

Turn off the TV and get some exercise! (Or use it to exercise to Power for Parkinson’s YouTube videos).

That’s the takeaway message from an analysis of non-identifiable patient data recently reported in this article:

Too much TV watching correlated with higher rates of dementia, depression, and PD

However, the study did find that some computer screen time had a neuroprotective effect. (This blog’s  author’s note: It would not be a bad idea to set a timer to remind yourself to get up every hour or so and get up, stand up, and dance to a little Bob Marley music for a minute or two, or three).

Methods

  • 473,184 participants initially free of dementia, PD, and depression from UK Biobank, as well as 39,652 participants who had magnetic resonance imaging (MRI) data
  • Self-reported screen time exposure variables included
    • TV viewing and
    • computer use
  • Regression models were used to estimate the association between different types of screen time and
    • Incidence of dementia,
    • Parkinson’s disease,
    • depression, and
    • Multimorbidity status.
  • Multiple linear regression models were used to assess the linear relationship between different types of screen time and MRI biomarkers in a subgroup of participants.

Multimorbidity was defined as two or more diagnoses of chronic diseases occurring simultaneously in an individual.

During the study time frame,

  • 6,091 (1.29%) participants developed dementia
  • 23,632 (4.99%) participants developed depression,
  • 1,214 (0.26%) participants developed both dementia and depression,
  • 486 (0.10%) participants developed both PD and depression

Participants

  •  Highest TV viewing time were
    • Older,
    • Typically male,
    • Higher body mass index (BMI),
    • Lower Physical Activity (PA) and
    • More likely  previous or current smokers.

Risk for dementia and depression increased substantially among those with both low PA and highest TV viewing time.

The main novel finding of this study is that TV viewing time was positively associated with an increased risk of dementia, PD, depression and their multimorbidity status. Moderate computer using time (i.e., approximately 0.5–1 h/day) is associated with a lower risk of dementia, PD, and depression.  

Longitudinal analysis and eliminating cases of depression, dementia, and PD that were diagnosed within the first three years are the strengths of the study. Self-reports on the amount of screen time by participants is a weakness.

In conclusion:

 computer using was U-shaped associated with risk of dementia, PD, depression and their multimorbidity status, while TV viewing was associated with an increased risk. And different screen time may affect diseases risk through its association with brain structures. Although associations between different types of screen time and diseases are not strongly attenuated with different levels of PA. Replacing different types of screen time with daily-life PA or structured exercise is associated with lower disease risk. Our results support the potential of limiting different types of screen time and shifting to physical activity to mitigate disease risk.

And this person with PD has spent too many hours in front of the computer screen writing this up, so I will follow their advice and engage in some PA.


Citation:

Wu, H., Gu, Y., Du, W. et al. Different types of screen time, physical activity, and incident dementia, Parkinson’s disease, depression and multimorbidity status. Int J Behav Nutr Phys Act 20, 130 (2023). https://doi.org/10.1186/s12966-023-01531-0

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