Resistance is futile…

Most folks will recall that line from various Star Trek encounters  with the Borg, as well as the following line “You will be assimilated.” Or was it the preceding line? Doesn’t matter, because the purpose of this post is to “announce” that my other WordPress blog, “Return To The Natives / Native Plants Are The Answer,” has been assimilated into “Bob’s Brain: Living Well With PD and Other Comorbidities.”

With the assimilation comes a couple of new categories in the menu: Native Plants, and Wildflowers. Here’s an example of what one might find under either of those categories.

2016-03-06-Rock-Pink-640pxlw

Rock Pink (Phemeranthus calycinus). The blooms are ephemeral, lasting only one day, although a single plant may have more than one bloom. They grow in limestone soils, in locations where waters flow after rains (in this part of the world). This was captured digitally following recent rains in early May, 2016. Their bloom period is from April through September, which is the latest month in the year that I’ve been able to photograph them.

Now I’ve assimilated the two, there’s only one blog to intermittently post articles about things that interest me. Reduces my guilt in half. Next step is to post the news on RTTN / NPATA with a link to Bob’s Brain, and then deleting the old blog. I’m a cyborg, having had DBS, so it should work out as well as the coders have allowed for such a smooth transition.

We’ll see what happens.

Live long and prosper.

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Moses Maimonides, James Parkinson, and me

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World Parkinson’s Day

Don’t know if it’s a cause for celebration or awareness, but here it is. World Parkinson’s Day , April 11, 2023. (If I managed to get my days right – seems I’m correct).

Anyway, to commemorate this day, I shall present some of my songs and “Parkinson’s Parodies©” that I’ve composed and or written lyrics to since having been diagnosed with Parkinson’s Disease in late 2011:

Submitted to the World Parkinson’s Coalition (WPC) this year as an entry in their song contest an original tune;

No Estoy Borracho

Also submitted to the WPC, a “Parkinson’s Parody©” based on Fleetwood Mac’s song “Don’t Stop”:

Don’t Stop Moving To The Music

Previously submitted to the WPC, but not this year,

Parkinson’s Anthem (We Ain’t Givin’ Up Hope”

… And that’s enough for today… I have an appointment with my Movement Disorders Specialist and so I gotta go now.

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Low cholesterol levels – could be a biomarker for PD?

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]).

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Verbal fluency, DBS, and parkinson’s

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.

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Attention, cyborgs: be aware of environmental electrical interference

I became aware through the news feed that some research is going on regarding electrical interference and DBS implants. Of all the websites and information I found, this page at UC-Davis is the most accessible:

DBS issues – UC-Davis health (PDF)

This next article isn’t accessible to me, but if anyone does have access and could shoot me a copy, it would be greatly appreciated. I might even get around to reading it. In fact, if anyone out there knows how I could get access to research journal subscriptions through an institution, please, please, please leave a note in the comments and I’ll get back to you.

Abstract

Deep brain stimulation (DBS) has evolved into an approved and efficacious treatment for movement, obsessive-compulsive, and epilepsy disorders that are refractory to medical therapy, with current investigation into other disease conditions. However, there are unintentional and intentional sources of external electromagnetic interference (EMI) that can lead to either malfunctioning or damaged DBS devices, as well as injury to human tissue. Comprehensive studies and guidelines on such topics in the medical literature are scarce. Herein, we review the principles behind EMI, as well as the various potential sources of interference, both unintentional (e.g. stray EMI fields) and intentional (e.g. MRI scans, “brainjacking”). Additionally, we employ the Manufacturer and User Device Facility Experience (MAUDE) database to assess real-world instances of EMI (e.g., airport body scanners, magnetic resonance imaging (MRI), and electrosurgery) affecting DBS devices commonly implanted in the United States (US).  (emphasis added above and below).

Highlights
• Electromagnetic equipment in our environment may interfere with implanted deep brain stimulation devices.

• Common EMI sources include airport security gates, antitheft and metal detectors, MRI, and electrosurgical or other medical equipment.

Intentional EMI to “hack” or “hijack” DBS systems is a growing cause for concern.

• Research on EMI and DBS devices is scarce, and deserving more attention given the gravity of potential adverse events.

Practical guidelines for patients, healthcare workers, and those who frequently handle electromagnetic devices are lacking.

Intentional EMI to “hack” or “hijack” DBS system?!?  I don’t know about my fellow cyborgs, but I am cautious about letting magnetic and electrical fields get close to the areas where I have my DBS electrodes, wiring, and programmer/battery. However, it sure would be nice. if they would at the least make the “practical guidelines” open access or available somewhere. Seems to be a contradiction. to make someone pay to find out how to protect oneself from harmful electrical interference. Isn’t  part of the Hippocratic oath “First, do no harm?” It seems to me that if you know the bridge is out, and some asks you for directions, and you tell them the directions but fail to mention that the bridge is out, that you are doing harm, The same goes with, “Yeah, I can tell you how to get there safely, but you’ll have to purchase a PDF file of the directions for $45.00 USD..”

Guess I’ll have to search for :”Practical Guidelines to Avoid Electrical Interference for DBS.” 

Boston Scientific has a nice page on EMIs, although it deasl with ICDs (which I take to mean (implanted Cardiac Device or something along those lines) basically a pacemaker for the heart.. So I guess this page will work folks who’ve become cyborgs due to PD DBS implants:  EMI safety

Another list of publicly available guidelines can be found at EMC Devices and risks on the Medtronics website. The list addresses risks related to cardiac devices,  but one can probably generalize to DBS devices (or one can look further than I did). Well, I looked a little further and found the DBS manuals for my model. Appendix A has the list of EMC guidelines. I also found the patient counseling information, which I’ll print here:

Patient information
Programming and patient control devices
Patient control devices may affect other implanted devices – Do not place the patient
control device over another type of active implanted medical device (eg, pacemaker,
defibrillator, another type of neurostimulator). The patient control device could
unintentionally change the operation of the other device.
Patient activities
Activities requiring excessive twisting or stretching – Patients should avoid activities
that may put undue stress on the implanted components of the neurostimulation system.
Activities that include sudden, excessive or repetitive bending, twisting, or stretching can
cause component fracture or dislodgement. Component fracture or dislodgement may
result in loss of stimulation, intermittent stimulation, stimulation at the fracture site, and
additional surgery to replace or reposition the component.
Component manipulation by patient – Advise your patient to avoid manipulating the
implanted system components (eg, the neurostimulator, the burr hole site). This can result
in component damage, lead dislodgement, skin erosion, or stimulation at the implant site.
Manipulation may cause device inversion, making a rechargeable neurostimulator
impossible to charge.
Patient activities and environmental warnings – Patients should exercise reasonable
caution in avoidance of devices that generate a strong electric or magnetic field. Close
proximity to high levels of electromagnetic interference (EMI) may cause a
neurostimulator to switch on or off. The system also may unexpectedly cease to function.
(emphasis added)- For these reasons, the patient should be advised about any activities that would be
potentially unsafe if their symptoms unexpectedly return. For additional information about
devices that generate electromagnetic interference, call Medtronic. Refer to the contacts
listed at the end of this manual.
Scuba diving or hyperbaric chambers (emphasis added)- Patients should not dive below 10 meters
(33 feet) of water or enter hyperbaric chambers above 2.0 atmospheres absolute (ATA).
Pressures below 10 meters (33 feet) of water (or above 2.0 ATA) could damage the
neurostimulation system. Before diving or using a hyperbaric chamber, patients should
discuss the effects of high pressure with their clinician.
Skydiving, skiing, or hiking in the mountains (emphasis added).- High altitudes should not affect the
neurostimulator, however, the patient should consider the movements involved in any
planned activity and avoid putting undue stress on the implanted system. Patients should
be aware that during skydiving, the sudden jerking that occurs when the parachute opens
may cause lead dislodgement or fractures, which may require surgery to repair or replace
the lead. (emphasis added).

My Practical Guidelines search uncovered another article, but it wasn’t open access. so I won’t even bother to link to it. I was going to add the Medtronics Appendix A, but it simply repeated the information above,

And there you have it. Don’t go putting strong magnets next to your brain, avoid Tesla Coils, and try not to get hit by lightning. 

And don’t let the EMS guys or ER folks stick you in an MRI machine.

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Sleep, drowsiness, DBS and PD

Here are a few links to articles that look at the effects of Deep Brain Stimulation (DBS) on sleep, and daytime drowsiness, which could be a side effect from poor sleep. Or it could be something else.

Long term effects of DTN DBS on sleep

10 year study on daytime drowsiness and PD

REM Sleep Behavior Disorder is one of the more highly correlated conditions that end up with Parkinson’s.I remember having to spend the night on the floor of a motel when traveling with the college marching band. I was dreaming about a girl, and reached out to put my arm around her,  waking the guy who was sharing the queen bed with me.  It’s funny, now. I’ve had worse dreams. Still act out some of them.  Which as a lead-in to:

The largest clinical investigation to date of Prodromal Parkinsonism and Neurodegenerative Risk Stratification in REM Sleep Behavior Disorder

Abstract from a chapter in a book on sleep disorders:

 Significant progress has been made in understanding the pathophysiology of sleep and wake disruption in alphasynucleinopathies during the past few decades. Despite these advancements, treatment options are limited and frequently associated with problematic side effects. Further studies that center on the development of novel treatment approaches are very much needed. In this article, the author discusses the current state of the management of disturbed sleep and alertness in PD and MSA. © 2017 International Parkinson and Movement Disorder Society (emphasis added)

accessed at this link:

Management of sleep disorders in Parkinson’s disease and multiple system atrophy

As someone once wrote: To sleep, perchance to dream…

To sleep, perchance to dream… or to stay up all night, that is the question

Other than the sound of Shakespeare rolling in his grave at that title, what else might be involved in insomnia? (disregarding the occasional benefits such as hearing Isaac Hayes’ version of “By The Time I Get To Phoenix” on a radio show titled “For Mushrooms and Night People,” or reading through James Joyce’s “Finnegan’s Wake” in one sleepless night).

Insomnia related to PD – according to this study abstract, the authors found that insomnia disorder co-morbid with Parkinson’s Disease was consistent with that of folks without PD, and they recommend a cognitive behavioral therapy approach to help treat people with this problem.

Insomnia co-morbid with Parkinson’s Disease

On the other hand, insomnia can lead to daytime drowsiness. And that, as this author can attest, can be co-morbid with REM Sleep Behavior Disorder (RSBD) or as narcolepsy for many years without a diagnosis.

Here are a couple of other articles on longitudinal studies related to PD and sleep issues. They are open access, so one can read and draw one’s own conclusions. As usual, one of the conclusions one might reach is that further research is needed on the topic.

Long term effects of STN DBS on sleep     In this study, it was found that DBS improved nocturnal sleep quality but had no effect on excessive daytime sleepiness.

10 year study on daytime drowsiness and PD   In this long term study, it was found that daytime drowsiness did not improve, even while other symptoms of PD progressively got worse.

The author refers you to the paragraph above in which RSBD was co-morbid and precedent to PD diagnosis, as well as narcolepsy, which was only diagnosed in recent years. Although symptoms may be associated with Parkinson’s, they might not be a part of the Parkinson’s Disease, and other causes must be ruled out in order to arrive at accurate diagnoses. For this, a team of medical personnel is required, and not specialists, each working alone in their own silo. (Opinions provided free of charge).

 

A couple of abstracts on sleep and restless legs

Sleep quality as prodromal PD symptom

Although the above link only leads to an abstract, there is enough information to accept their conclusion that “in the general population, deterioration of sleep quality and duration are markers of the prodromal phase of parkinsonism, including Parkinson’s disease.”

Restless Legs Syndrome and whether or not it is improved by DBS is apparently not a matter of consensus RLS improved by DBS although, again, this is not a full text article.

 

December in July

The title refers to the fact that this post was drafted back in December 2016 as an email InfoShare for the Capitol Area Parkinson’s Support (CAPS) group, which is meeting today (July 15 2017) at 2 PM. Never did send it out. So here it is, a few months late, but the news is still timely. Especially the value of early treatment and diagnosis of PD.  So, here it is:
The London School of Economics and Political Science recently released a report on the “Value of Early Diagnosis and Treatment in Parkinson’s Disease”, a literature review of recent studies with recommendations for action. It can be downloaded at http://www.braincouncil.eu/wp-content/uploads/2016/11/Parkinson-report-2016-1.pdf 
On a broader view of PD,  here’s a link to a page that has links to just about everything Parkinson’s – The National Institutes of Health (NIH) U.S. National Library of Medicine (NLM) Medline Plus topic page on Parkinson’s Disease.
OK – you can spend a week going through all of that information. 
So here are the items mentioned in the subject headline:
First, evidence that DBS is helpful in early stages of PDS, not just in later stages. Benefits extend for at least 5 years.
The PDF copy of the research paper referenced in the above news article can be found at this link:
A less drastic approach than brain surgery might be helpful for motor symptoms:
Next, contradictory evidence regarding whether statins used to lower cholesterol levels offer a protective effect for PD – previous analyses said yes, but further massage of the data reveals that the answer is not as simple as it seemed at first.
Here are links to related articles, papers, and abstracts:
Earlier this year, an analysis of ten reports that yielded different conclusions after adjusting for cholesterol levels.
In 2012, the JAMA Neurology journal published a prospective analysis that indicated statins reduced the risk of PD. (PDF of full article is available for free download):
Several years ago, an analysis found publication bias in favor of positive results, and both a protective effect for statin use and no protective effect for long term statin use:
And last year, an analysis of published reports that found that use of statins was not protective for PD, in contrast to the hypothesis that statins are protective.