Category Archives: Research

Parkinson's, Research , , Leave a comment

Not a cure, but a biomarker

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A biomarker for Parkinson’s?  Maybe… (If you don’t have a free ResearchGate account, yu might not be able t see this link):

A blood marker for Parkinson’s Disease: Neuronal exosome-derived α-synuclein

This isn’t in print yet, so I’ll just quote frm the abstract:

18 To date, no reliable clinically applicable biomarker has been established for Parkinson’s
19 disease (PD). Our results indicate that a long hoped blood test for Parkinson’s disease may
20 be realized. We here assess the potential of pathological α-synuclein originating from
21 neuron-derived exosomes from blood plasma as a possible biomarker. Following the
22 isolation of neuron-derived exosomes from plasma of PD patients and non-PD individuals
23 immunoblot analyses were performed to detect exosomal α-synuclein. Under native
24 conditions significantly increased signals of disease-associated α-synuclein forms in neuron25 derived exosomes were measured in all individuals with PD and clearly distinguished PD
26 samples from controls. By performing a protein misfolding cyclic amplification assay these
27 aggregates could be amplified and seeding could be demonstrated. Moreover, the
28 aggregates exhibited β-sheet-rich structures and showed a fibrillary appearance. Our study
29 demonstrates that the detection of pathological α-synuclein conformers from neuron-derived
30 exosomes from plasma samples has the potential of a promising blood-biomarker of PD.

Exosomes are small bundles of proteins  enclosed by a membrane (if I understand it correctly)(feel free to correct me- the Wikipedia article hd a note saying that it was too technical for most readers – and I agree).

Exosomes contain material from the cells from which they originated, so might be used as biomarkers. Obviously, it will take a while to fund the research and develop some way to determine how far along the way to developing PD someone is.  But the sooner a person can deal with it, the better the opportunity to live well with it. I look forward to the development of biomarkers that will help predict who might get Parkinson’s, so those folks can take preventive action.

I am fortunate that my symptoms did not appear in the usual sequence,and that I had DBS early after diagnosis, have had an outstanding medical team looking out for me and working with me, have a strong local community supporting people with Parkinson’s, and have a care partner who makes sure that my diet is full of organic foods, produce, and as few highly processed foods as possible. And I get lots of exercise, considering that I’m not athletic and I am not into weightlifting or bodybuilding.

Lucky me.

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

Verbal fluency, DBS, and parkinson’s

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

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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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Dee Bee Ess (Deep Brain Stimulation (DBS))

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First of all, something I have suspected seems to have some clinical evidence:

It seems that the earlier one has Deep Brain Stimulation (DBS) following a Parkinson’s Disease diagnosis, the better one fares:

Pre-dopa Deep Brain Stimulation: Is Early Deep Brain Stimulation Able to Modify the Natural Course of Parkinson’s Disease?

This observational study evidences that DBS treatment exerts beneficial effects on motor symptoms and quality of life in early stages of PD, if applied when first functional and QoL-impairments occur, even before L-Dopa treatment initiation. These novel data and paradigm shift proposal challenge current algorithms for PD treatment and grants further studies evaluating the disease course-modulating potential of very early DBS application in larger populations.

I was fortunate enough to have opted for DBS due to Essential Tremors, when eventually the testing revealed the cardinal traits of Parkinson’s. Had I not received DBS implants at that time, but waited until the disease had progressed to a later stage, I would not likely be in the shape I am today.

Another Item of Interest is the article titled “Personality dimensions of patients can change during the course of parkinson’s disease” to which I can also add an affirmation. DBS programming has enabled me (along with a long term psychiatric neurobehavioral specialist  relationship) to stop having episodes of Major Depressive Disorder (MDD) and have now been off antidepressants for over a year. Although this is not necessarily what the authors had in mind when they did their study, it does suggest that DBS had something to do with it. Particularly after one DBS programming session, I apparently went into a manic state, which caused my wife to report the change in mood and behavior to my Movement Disorders Specialist, so that the programming was “dialed back a few notches.”

And of course, a good deal of the credit goes to my wife, who looks after my diet so that I am eating nutritious and organic foods as much as possible, and the good folks at Power for Parkinson’s and the Georgetown Area Parkinson’s Support group, which provide exercise classes and social connections. I have noticed a more outgoing personality than previously, though it would be difficult to disentangle the various factors influencing any supposed changes in my alleged personality. 

As Michael Jackson said to Paul McCartney in “The Girl Is Mine,” I’m a lover, not a fighter.” 

or as David Bowie sang, “Ch-ch-ch-changes.”

okay, now I’m just being silly.

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Parkinson's, Research, Reviews Leave a comment

Palliative Care: It’s Not Just For End Of Life Anymore

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In a discussion recently, the topic of Palliative Care came up. Some of us were under the impression that this was part of Hospice Care, which is usually reserved for the end of a life when the disease process has overwhelmed the body’s defenses. 

So, naturally, I did a search on PubMed Central to see what I could see. It turns out that, as the title says, it isn’t just for end of life. This first link is to a Mayo Clinic Proceedings CME course that expired for credits in 2015. But, the main points are:

  • Palliative care is not just for end of life cancer patients
  • Patients with chronic illnesses or conditions can benefit
  • Palliative care is appropriate at any stage of a serious disease or illness
  • Palliative care is a team effort
  • Palliative care can help reduce pain in chronic illnesses
  • Palliative care teams can help with managing complex communication interactions and with dealing with the emotional impact on patients and their families

Here’s the link:

What everyone should know about Palliative Care

Then, I thought it would be useful to get the World Health Organization’s definition:

Fact sheet: Palliative Care

Then, I found a recent clinical trial of Palliative care vs Standard care for people with PD:

A clinical trial of PC v SC for people with PD.  

The clinical trial showed better quality of life for people that received palliative care vs. those who received standard care. The variables were operationalized as: ” Outpatient integrated PC administered by a neurologist, social worker, chaplain, and nurse using PC checklists, with guidance and selective involvement from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care practitioner.” Unfortunately no significant difference was found on burden for caregivers.

Finally, a citation: Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016 Jan;23(1):30-8. doi: 10.1111/ene.12889. Epub 2015 Oct 1. PMID: 26423203. Although the complete article is not available online, they do make a few points:

  • …there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms … and quality of life of patients and their families …
  • Main areas in which consensus was found and recommendations could made were:
    • the early integration of palliative care,
    • involvement of the wider multidisciplinary team,
    • communication with patients and families including advance care planning,
    • symptom management,
    • end of life care,
    • carer support and training, and
    • education for all professionals involved in the care of these patients and families

So there you have it. And since this blog is primarily about my interests in learning more about my Parkinson’s Disease diagnosis and various comorbidities so that I can live as well as I can for as long as I can, I am reassured by these findings and recommendations. Gesundheit! Mazel Tov! Salut! L’Chaim! and to quote Tiny Tim, “Bless us, every one!” 

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Dance, Drumming, Exercise, Parkinson's, Research , , , , Leave a comment

Slow down… or speed up, that is the question…

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This article isn’t about Parkinson’s, but since bradykinesia is one of the signature symptoms of parkinsonism, and the title is about the challenge of being slow, it interested me.

Birgitta Burger & Clemens Wöllner (2021): The challenge of being slow: Effects of tempo, laterality, and experience on dance movement consistency, Journal of Motor Behavior, DOI: 10.1080/00222895.2021.1896469

Basically, the authors found that people who were musically trained were better able to perform the given tasks consistently on both sides of their bodies. In other words, they are bilateral in terms of brain dominance, while other folks showed lower scores in terms of consistently performing the actions at different tempi (speeds). Because they were dominant on one or the other side of their brains. 

As an amateur musician, mostly untrained (or it didn’t take) I have found that during rhythm & drumming classes that I have been in that things like a simple paradiddle are much more difficult at a slower tempo than at a faster tempo. On the other hand, some combinations are more difficult at a faster tempo than at the slower tempo. Just trying to build those cross brain connections, as the prefrontal cortex to the back of the brain and the motor control and reward system parts fade out. So I will play at the piano at a slow speed, ’cause if I pick up the tempo my fingers get even more clumsier than they are.

Maybe difficulty with moving both sides consistently is part of the reason People with Parkinson’s have difficulty with balance and with falls?  From my own experience, can’t confirm or deny the hypothesis, since I’m not that good as a musician, but seem to have some bilateral skills, and until recently, when immersion in the moment took over the judgement and reason, have not experienced problems with balance or falls. Would be an interesting research question, though…

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Parkinson's, Research , , Leave a comment

Attention, cyborgs: be aware of environmental electrical interference

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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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Parkinson's, Physical Therapy, Research, Reviews , Leave a comment

More physical therapy, more research & guidelines

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Perhaps it is because one is in rehabilitation, that one’s interest turns towards rehabilitation and Parkinson’s Disease. Sounds like a reasonable explanation.

This article from 2017 looked at rates of utilization of rehabilitative services, looking at several demographics:  Utilization of rehabilitation therapy services in Parkinson disease in the United States    (This article is on PubMed and is open access).

  The authors. …”found that 75% of Medicare beneficiaries diagnosed with PD did not receive rehabilitative therapies over a 36-month period. While it is not clear what the appropriate utilization rate should be, utilization among patients with PD in the Netherlands and the United Kingdom greatly exceeds what we found in the United States: at least 57% and 54%, respectively., In this study, predictors of higher (but still low) rates of therapy utilization included PD care by a neurologist, Asian or Caucasian race, and geographic location. 

The NICE folks in the UK have a link where one may download their entire set of guidelines for treatment of people with Parkinson’s:

Parkinson’s disease in adults

After looking at their recommendations on DBS, I’m not sure I am in total agreement with them there. But other that, they seem to be solid, aimed at the general practitioner, though, not to the Movement Disorders Specialist (my impression).

This article is not available for open access, but here’s the citation:

Rafferty, M.R., Nettnin, E., Goldman, J.G. et al. Frameworks for Parkinson’s Disease Rehabilitation Addressing When, What, and How. Curr Neurol Neurosci Rep 21, 12 (2021). https://doi.org/10.1007/s11910-021-01096-0

There is moderate to strong evidence supporting physical therapy, occupational therapy, and speech-language pathology soon after diagnosis and in response to functional deficits.

We propose a framework of three pathways for rehabilitation care:

(1) consultative proactive rehabilitation soon after diagnosis for assessment, treatment of early deficits, and promotion meaningful activities;

(2) restorative rehabilitation to promote functional improvements; and

(3) skilled maintenance rehabilitation for long-term monitoring of exercise, meaningful activities, safety, contractures, skin integrity, positioning, swallowing, and communication.   (emphasis added).

I would agree with the overall framework – I have had some postural issues since the beginning (pre-PD), and assessment and promotion of meaningful activities would have been helpful. I did receive some physical. therapy to correct posture, which did so, only to reveal spinal stenosis.  Later on, I had bunionectomies which kept me wheelchair bound or with limited mobility for a year, and restorative rehabilitation was provided and needed. Finally, my own hubris regarding my mobility led to several falls in 2019 and 2020, and are now being addressed with both restorative rehabilitation and skilled maintenance rehabilitation which will hopefully correct the problems and provide the the tools to maintain posture, etc. over the (hopefully) years to come.

Mediclal Marijuana, Music, Parkinson's, Research, Reviews, Sleep , , , Leave a comment

Cannabis and Parkinson’s Disease (PD)

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This article popped up in my email alerts. Although I do not have access to the journal in which it appeared, I thought I would post it anyway, along with several article titles that appeared in the same journal. (If my former employer would grant me access to their technical library, I would be most grateful, and might even forego any patent filing awards that I would be eligible for if I hadn’t retired. I come across at least one new Human-Computer Interface issue that could be solved each week, But I digress). (The actual link to the article was in Medscape News).

Despite high interest (no pun intended(?)) in the use of cannabis as a treatment for Parkinson’s Disease symptoms, this study  finds that actual use remains low (at least in Germany). The article appeared in  Journal of Parkinson’s Disease: Yenilmez, Ferhat et al. ‘Cannabis in Parkinson’s Disease: The Patients’ View’. 1 Jan. 2021 : 309 – 321. 11, no. 1, pp. 309-321, 2021.

Sadly, it is not available as open access, but fortunately the methods and results provide adequate data regarding the study.

Abstract:

Background: Little is known about the patients’ view on treatment with medical cannabis (MC) for Parkinson’s disease (PD). Objective: To assess the PD community’s perception of MC and patients’ experience with MC.Abstract:

Methods: Applying a questionnaire-based survey, we evaluated general knowledge and interest in MC as well as the frequency, modalities, efficacy, and tolerability of application. Questionnaires were distributed nationwide via the membership journal of the German Parkinson Association and locally in our clinic to control for report bias.

Results: Overall, 1.348 questionnaires (1.123 nationwide, 225 local) were analysed. 51% of participants were aware of the legality of MC application, 28% of various routes of administration (ROA) and 9% of the difference between delta9-tetrahydrocannabinol (Δ9-THC) and cannabidiol (CBD).

PD-related cannabis use was reported by 8.4% of patients and associated with younger age, living in large cities and better knowledge about the legal and clinical aspects of MC. Reduction of pain and muscle cramps was reported by more than 40% of cannabis users. Stiffness/akinesia, freezing, tremor, depression, anxiety and restless legs syndrome subjectively improved for more than 20% and overall tolerability was good. Improvement of symptoms was reported by 54% of users applying oral CBD and 68% inhaling THC-containing cannabis. Compared to CBD intake, inhalation of THC was more frequently reported to reduce akinesia and stiffness (50.0% vs. 35.4%; p < 0.05). (emphasis added) Interest in using MC was reported by 65% of non-users.

Conclusion: MC is considered as a therapeutic option by many PD patients. Nevertheless, efficacy and different ROA should further be investigated.

Some other articles on the same issue that might be of interest (All are at the above link):

The Subjective Experience of Living with Parkinson’s Disease: A Meta-Ethnography of Qualitative Literature

Does Gut Microbiota Influence the Course of Parkinson’s Disease? A 3-Year Prospective Exploratory Study in de novo Patients

Association Between Thyroid Diseases and Parkinson’s Disease: A Nested Case-Control Study Using a National Health Screening Cohort  ” The rates of levothyroxine treatment for more than 3 months, hypothyroidism, and hyperthyroidism were higher in the PD group than the control group (3.2%, 3.8%, and 2.8% vs. 2.5%, 2.9%, and 1.9%, respectively, p  < 0.05). The adjusted odds ratios (ORs) in model 2, which was adjusted for all potential confounders, for hypothyroidism and hyperthyroidism in the PD group were 1.25 (95% confidence interval (CI) 1.01–1.55, p  = 0.044) and 1.37 (95% CI 1.13–1.67, p  = 0.002), respectively. 

Subthalamic Stimulation Improves Quality of Sleep in Parkinson Disease: A 36-Month Controlled Study

Diet Quality and Risk of Parkinson’s Disease: A Prospective Study and Meta-Analysis

Identification of Pre-Dominant Coping Types in Patients with Parkinson’s Disease: An Abductive Content Analysis of Video-Based Narratives

Dissonance in Music Impairs Spatial Gait Parameters in Patients with Parkinson’s Disease “ Conclusion: Our observations suggest that dissonant music negatively affects particularly spatial gait parameters in PD by yet unknown mechanisms, but putatively through increased cognitive interference reducing attention in auditory cueing.”

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Parkinson's, Research, Reviews , , , , , , Leave a comment

So.. what’s new?

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A couple of recently published reviews (for folks that want to stay on top of things) :

What do we know about PD and what can we do about it?   This one is more of a commentary piece, that is to say, it isn’t an experiment or a structured desk review of other papers. It covers PD in (almost) layman’s terms, the causes (genetic, environmental, and perhaps lifestyle choices – nicotine and caffeine seem to have a neuroprotective effect), and the signs and symptoms:

… symptoms appear in other diseases as well so that not everyone with one or more of these symptoms has
the disease. In some people, the disease evolves more quickly than in others and it is not possible to predict what course the disease will take.

According to the author, the younger the age at onset, the more likely it is to be genetically related. Later onset symptoms appear more gradually. ( my note: I had many of the prodromal symptoms beginning around age 16, including REM Sleep Behavior Disorder, depression (probably due to environmental (e.g., workplace management) factors), essential tremors,  and have the LINGO1 gene variant that has been linked to both essential tremors and Parkinson’s. A recent Michael J. Fox Foundation – 23AndMe study found another couple of dozen or more gene variants associated with a higher risk for Parkinson’s. Clearly, there is a need for earlier detection and mitigation of Parkinson’s and parkinsonism conditions).

PD dementia and dementia with Lewy bodies differ in when dementia occurs, among other things. In PD, dementia occurs after PD diagnosis, in the latter, dementia occurs before PD symptoms become apparent. 

The author continues to provide an overview. But for me the sentence that stuck out glaringly was “Scientists still do not know what causes cells that produce dopamine to die.” (I need to finish reading this one… Will have to put it on my to-do list). 

Parkinson’s patients’ needs during the pandemic   This was a survey study done in Northern Italy with PD patients. Findings included:

(i) fearing the risk of contracting coronavirus,

(ii) the reduction of physical activity,

(iii) perception of the risk of not being able to access outpatient clinics or support services, and

(iv) the suffering from the important reduction in socialization.

The authors also noted that the perception could be greater than the actual difference, especially for item iii.

Enhanced differentiation of human induced pluripotent stem cells toward the midbrain dopaminergic neuron lineage through GLYPICAN-4 downregulation    I just tossed this link in for kicks – it is way outside of my area of expertise, but might be of interest to someone who knows something about the workings of the brain.

A scoping review of the nature of physiotherapists’ role to avoid fall in people with Parkinsonism – Now, here’s something I have a little more experience with – having fallen 3 times in October 2020 while stepping backward off of boulders, or trying to step up onto a boulder, either in my yard or in a park/preserve. Fortunately, I was referred to an excellent Physical Therapist who zeroed in on the greatest source of pain and then has moved toward improving strength, balance and posture. She noted my habit of leaning back when stepping high, and suggested that this might have caused the last, and most painful fall. 

As for the review, it noted that PT can have a positive effect on many issues related to falls in Parkinsonism. But the many studies were so varied, that many more studies would have to be done to specify which therapy works best for which problem at what stage of the disease. (surprise, surprise).

And now, to sleep, perchance to dream (Shakespeare) and hopefully, not to be tossin’ and turnin’ all night (Phillip Upchurch).

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