This is photography on Parkinson’s

This is photography on Parkinson’s… sometimes. Sometimes you accidentally hit the button due to herky-jerky movements, sometimes you manage to get the shot you envisioned in the viewfinder. Some days your vision is blurred and it’s hard to say whether or not you have the item you want in focus, in focus. More often than not, it’s blurred, and the background or foreground isn’t focused instead. Of course, one can always use autofocus, but that has the same issues as manual focus with blurry vision. The best one can do in that situation is to click the shutter as soon as the screen blinks red, indicating that everything’s in focus. And then, of course, somedays you get the focus right and the shutter speed and it all works. Then again, when life hands you bitter citrus, sometimes you can make a Margarita. Or better yet, KeyLime Pie.

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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All my weeds are wildflowers (I wish)

Passiflora incarnata/Ruellia nudiflora hybrid?

A couple of native plant species have begun to spread like weeds in the narrow area separating my subdivision plat from my neighbor’s house.

Passiflora incarnata, or Purple Passionflower, has sprung up where a corkscrew passionflower vine used to be, and through rhizomes has managed to propagate itself all along the Southern side of the house. I’ve done some pulling of the pups as the poke up through the mulch, and have been able to give away a few of them for others to try to get their own vines going.

The flowers of the Passion flower vine are about three inches in diameter, with the petals forming a wavy fringe. Stamens and stigmas also are striking in appearance as well. Several different types of butterflies use this as a larval host, most notably the Gulf Fritillary (Agraulis vanillae ) and Variegated Fritillary (Euptoieta  claudia ) butterflies. 

Passiflora icarnata infloresence, tri-lobed leaves, and tendril

Passiflora icarnata inflorescence, tri-lobed leaves, and tendril

The Ruellia nudiflora, or Wild Petunia, also has a purple to lavender flower, but it is trumpet-shaped. And it’s not a vine, but a sub-shrub perennial . After having transplanted this volunteer several years ago, it has now decided to propagate itself, like a weed, in the mulched bed and in the gravel path. Although its inflorescences look much like those of the cultivated Petunia, it is in the Acanthus Family, while the cultivated Petunia is in the Potato Family. The blossoms open in the morning, falling off in the afternoon. Like several other of my favorite wildflowers, its flowers are ephemeral, lasting for just a day.

Ruellia nudiflora inflorescence, surrounded by Passiflora leaves and tendril

Ruellia nudiflora inflorescence, surrounded by Passiflora leaves and tendril

As if having to “weed” native species wasn’t bad enough, as one can see from the top photo in this post, it looks as though the two plants have begun to hybridize to form a new species. Fortunately, (or unfortunately), that’s not the case: A blossom from the Ruellia has been captured by a tendril from the Passiflora, making it look (almost) like it belongs to the vine. 

Not sure what I’d do if they actually did start to hybridize – probably get a botanist or two to take a closer look. And get a nursery to work with to develop and patent the new species. And sit back and watch the money roll in (ha!).

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

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

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

First: find out whether someone with PD is depressed.

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

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

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

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

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

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

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

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

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

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

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

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

Abstract

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

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

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

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

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

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

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

More to the point:

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

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

You’ll feel better if you do.

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What to do?

When it comes to diseases like cancer, the UK medical folks have decided that the “fighting” and “warrior” mentality are counter-productive. For one, this mindset causes people to delay seeking treatment. I don’t have the exact citation at hand, but it is referenced in this blog somewhere, and you’re welcome to search for it. (Thankfully, this is not a dissertation or scholarly article, or I couldn’t have written the previous sentence and gotten away with it).

But when it comes to exercise as a good way to slow, and sometimes reverse the physical or cognitive symptoms of Parkinson’s Disease (PD), there ain’t no doubt in some folks minds that dance is one of the finer things around to combine aerobic exercise, movements, and cognitive challenges to build new connections between neurons in the brain.

From the Digital Commons at Sarah Lawrence College comes this Master’s Thesis:

Rajan, Sneha, “Embodied Medicine: Integrating Dance/Movement Therapy into Physical Medicine & Rehabilitation” (2021). Dance/Movement Therapy Theses. 79. https://digitalcommons.slc.edu/dmt_etd/79

Long story short: “Overall, physiatry and dance/movement therapy have separately helped so many people but developing a synergy between these fields has the potential to transform rehabilitative medicine.”(emphasis added).

Specifically addressing Parkinson’s Disease issues, she writes:

For individuals with Parkinson’s disease, studies have shown that physical rehabilitation is an effective way to manage motor and non-motor symptoms (Mitra et al., 2020). However, maintaining motivation for treatment is difficult because of progressive difficulties with physical disability and co-existing emotional factors, so as a result not many adults engage with enough physical exercise (Mitra et al., 2020). By incorporating cognitive, emotional, and social components, the exercise environment could become more engaging and multidimensional (Mitra et al., 2020). One experimental study examined the effects of dance/movement therapy sessions on the cognition, quality of life, and motor symptoms of patients with Parkinson’s disease (Mitra et al., 2020). They used a variety of techniques such as targeted body exercises, memory games, movement improvisation, guided imagery, rhythm work, contact improvisation, mirroring, body coordination and movement reflexes (Mitra et al., 2020). Music was also used to incorporate rhythm and sensory motor cues (Mitra et al., 2020).

As a result, participants showed a significant increase in cognitive functioning and a decrease in Parkinson’s related health difficulties. Additionally, patients reported improvements in coordination, mood, and memory (Mitra et al., 2020). Another study analyzed the effectiveness of music-based movement therapy on gait related activities in Parkinson’s patients (Dreu et al., 2011). They examined both individual music-based gait training and partnered-dance interventions. The music provides rhythmic cues that help synchronize movements and also facilitates emotional responses in the participants (Dreu et al., 2011). Participants showed improvements in walking velocity and balance (Dreu et al., 2011). (Emphasis added.)

 If I were to judge this Master’s thesis, I would suggest more sources, and more recent ones than the one she used in material about Parkinson’s in the paragraphs before the ones I quoted above. But I’m not on the faculty of Sarah Lawrence College, so that’s their loss.

And the answer to the question posed in the title of this blog entry “What to do?” is simple: Don’t Stop Moving To The Music!

 

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What a difference a year makes… for the better, this time.

After having managed to prevent the mowing down of a stand of wildflowers back in May, I had been busy bagging Centaurea melitensis (Maltese Star Thistle) from the berm between my house and the green belt, until last week, when I woke up Saturday morning with an excruciating pain which was diagnosed as a sciatic nerve issue. Haven’t done much weed-pulling since then. It’s not perfect yet, but I think we’ve made some progress.

So I think it’s about time to show how much better the berm looks this year (after thistle removal).

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Oh no! They (almost) did it again!?!

May 7, 2021: I was just about to go out into the greenbelt for some photo taking when I heard the sound of a mower on the berm. I quickly came back running and shouting for him to stop.

Pointing out all of the native Texas wildflowers still in bloom, I explained that one should NEVER mow down a stand of wildflowers in bloom (as was done last year while I talked on the phone with their home office). I mentioned that I was trying to eliminate the invasive weeds so that the native wildflowers would have a chance to return, including the Bluebonnets, some of which had not set seed yet. (And to which he replied something along the lines of yeah, I thought I saw some back there, indicating the area that he had just mowed, and which now showed no evidence of Bluebonnets).

For an idea of what happened in 2020, refer to these two posts: May 25, 2020 May 28, 2020

Last year I managed to pull most of the Perennial ryegrass (Lolium perenne) that had covered the berm. This time around, Maltese star-thistle (Centaurea melitensis) was the infestation of the year, and as of May 11, 2021, I have removed about 10 bags of this from the berm behind my house. Of course, it has already infested the greenbelt.

To their credit, the mowers backed off, apparently called someone for instructions on what to do, and then proceeded not to mow any more of the berm behind my fence, although he did have to drive through the area, choosing a path that would minimize the damage to the wildflowers. And crushed a good deal of the thistles to the ground, along with some wildflowers.

Thankfully, in spite of the C. melitensis, the wildflower population was much more numerous than last year. The recessive gene all-yellow Gaillardia pulchella (Indian blankets) for which I have coined the common name “Sunwheels” in contrast to the all-red pigmented “Firewheels” have also bloomed again, this time almost entirely on the berm. In previous years I have seen them in a few nearby locations, but for the last three years I have observed them directly behind my house, on the berm or in the greenbelt. (Of course, when you only have to step out the back yard to see them, you are not motivated to search very far for them).

But enough blah blah blah. Here are some pictures worth a thousand words, especially when compared with the posts from 2020.

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Asclepias asperula (Antelope Horns) after the mowing.

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Gaillardia pulchella (“Sunwheel”) surrounded by Centaurea melitensis (Maltese star thistle)

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Berm behind my house – native plants plus invasive weeds

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The green belt – Gaillardia pulchella in bloom

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The mower mows, leaving nothing behind. Looking South from behind my house, greenbelt to the left, berm behind my fence in the foreground.

May all your weeds be wildflowers.

#BCMUD

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Dee Bee Ess (Deep Brain Stimulation (DBS))

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

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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