The Symptom No One Mentions; Runny Nose

Posted on April 5, 2026 by Truthful Kindness

… At a family gathering, a small, familiar panic: my nose is running, and I can’t find my handkerchief.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. More admin information is at the bottom of this entry. My most recent painting is “Hanky2026 — Carried not out of habit, but as a quiet act of adaptation.”

There are symptoms that arrive with a name, a paragraph, a checklist.

And then there are the others.

The ones you learn by living them.

For me, one of those has been a runny nose.

Not seasonal. Not allergic so no sneezing, etc. Not something that comes and goes with a cold. It has been present for about fifteen years now—steady, watery, and entirely uninterested in explanation. I do not buy clothes without a pocket for handkerchief. I do not sit down without knowing where my handkerchief is. This is not preference; it is architecture.

And yet, if you look for it in descriptions of Lewy body dementia, you will not easily find it.

There is, however, a clue.

Lewy body dementia affects the autonomic nervous system—the part of the body that runs quietly in the background, managing what we do not consciously direct: blood pressure, digestion, sweating, salivation. The invisible systems. The ones that do not ask permission.

When that system becomes dysregulated, it does not fail cleanly. It shifts. It overdoes. It underdoes. It forgets its own calibration.

In Parkinson’s disease—a close biological relative to Lewy Body—researchers have documented something called rhinorrhea: a persistent, watery runny nose that is not caused by allergies or infection. In one study, “rhinorrhea was reported more frequently in patients with Parkinson disease than in controls,” and was “typically watery and not associated with allergic symptoms.” They point instead to autonomic dysfunction. The body’s internal “faucet” is simply set too high.

That framing matters.

Because once you see it that way, the symptom is no longer random.

It belongs.

At night, I also experience episodes of sudden, unpredictable sweating. They feel almost identical to menopause—except menopause ended more than twenty-five years ago. These are not hormonal tides. They are something else.

Again, the autonomic system.

Again, regulation without stability.

What is striking is not just the symptoms themselves, but their status.

Unlisted. Under-discussed. Easy to dismiss.

A runny nose sounds trivial—until you are the one designing your entire day around access to cloth and discretion. Until you are calculating social spaces, fabrics, proximity. Until you realize that what appears small can, over time, become structural.

There is a particular kind of invisibility here.

If a symptom is not widely named, it is often quietly reassigned—to aging, to coincidence, to “just one of those things.” And yet, lived experience suggests otherwise. Patterns emerge. Parallels appear across related conditions. The body tells a consistent story, even if the literature has not fully caught up in naming each sentence.

I am increasingly aware that living with Lewy body dementia symptoms is not only about managing what is known.

It is also about recognizing what is coherent but unnamed.

About trusting that if a symptom fits the system, it may belong to the system—even if no one has yet given it a line item.

So I carry a handkerchief.

Not as a minor convenience, but as part of a larger design—an adaptation to a nervous system that no longer regulates quietly in the background.

And perhaps, over time, these quieter symptoms will become more visible. Not because they have changed, but because we have learned how to see them.

Sometimes the body is speaking clearly.

It is the categories that are still catching up..

***

Attached Picture:

Yes; the cover photo is a digital painting of mine. “Hanky2026 — Carried not out of habit, but as a quiet act of adaptation.” Again, I mostly used AlainaJensen brush sets; this time especially the Felting brushes, with Procreate tools on iPad that compensate for my tremors. The higher resolution picture shown below is available for free download from my Flickr acct at >> https://www.flickr.com/photos/194191353@N04/. Ai description of digital painting: A stylized illustration of a triangular handkerchief featuring floral motifs, decorative stitching, and soft pastel colors, surrounded by whimsical botanical elements.

Links to SOURCES used in this entry:

Rhinorrhea in Parkinson Disease (Neurology journal). A clinical study documenting persistent, non-allergic runny nose as a feature of Parkinson’s, linked to autonomic dysfunction.
https://pubmed.ncbi.nlm.nih.gov/20350983/ ;

Lewy Body Dementia Association — Educational materials on Lewy body dementia, including autonomic symptoms and how the condition affects the body’s regulatory systems. at >> https://www.lbda.org/ .

Contact Options:

Other contact options are FaceBook and “X” (aka Twitter), both under “Truthful Kindness”. On Reddit, i am at “TruthfulKindness” in groups “r/dementia”, “r/lewybodydementia”, and “r/alzheimers”. i dropped my LinkedIn membership quite a few years ago. If requesting “friend” status for any form of Social media, please send a private message explaining that you are a reader of my blog. …

* Admin issues:

Invested 3 days on text and art for this entry. ******* SUBSCRIPTION box is now at the bottom of each blog entry. … My own full legal name is Truthful Loving Kindness. My current formal diagnosis is still clinically at stage of “Mild Cognitive Impairment”, altho my Primary Care Physician and several other medical personnel disagree and consider it some form of dementia. My PCP files still say “Dementia without behavioral disturbance, unspecified dementia type”. In the past several years, my Primary Care Physician, Husband/Care-Partner, and Myself have agreed to quit seeing specialists for further clinical clarification of diagnosis and stage. Specialists are too far away, and the emotional roller-coaster causing stress is not worth it to me. My dementia symptoms are mostly Lewy Body and Vascular types of dementia symptoms, but SPECT and PET scans show my brain damage is currently most serious in the temporal lobes, which creates a lot of similarities with the Logopenic variant of PPA (a subtype of Fronto-Temporal type of dementia). ******* … Text Copyright © Truthful L. Kindness on 2026Apr05 at 9pm. … You can find more about me in this blog under the “About Me” tab (although that page was posted long ago and also needs an update). Feel free to leave your thoughts here in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** 2026 i have begun to use “ChatGPT” editor; This improves readability and reduces the time I spend in the writing process, but retains my writing style. I am still on the “free” version of the blog (except for the domain name TruthfulKindness), so I notice there are now quite a few more advertisements on the page. Sorry. Currently in negotiations to transfer to the paid version of the blog to avoid advertisements. I have no control over which advertisements are shown. … ******* … I don’t mind re-posting of things I write, but if you re-post, then I expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and you must provide a very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com.

. *** … If there is an advertisement below, I have no control over what is shown.

categ: travel, jrny, relat, Sx. <10 tags: autonomic dysfunction, dementia, invisible symptoms, lewy body, nervous syswtem dysregulation, night sweats, non-motor symptoms, Parkinson’s, Persons Living with Dementia, PLwD, rhinorrhea, runny nose, unexplained symptoms. Add to Pgs/S&S Categ: Clothing, Hygiene, Invisible,

Thinking, Carried Heart to Heart

Posted on March 31, 2026 by Truthful Kindness

What I see in dementia peer groups is not the loss of intelligence, but its transformation. Ideas move between people—shifting, softening, connecting—until what no one could solve alone becomes something we can carry together. This painting of a circle is not about completeness, but about relationship: an intelligence made not of certainty, but of shared, adaptive, and deeply human ways of knowing.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder, so I have now begun to use “ChatGPT” to edit. This improves readability and reduces the time I spend in the writing process. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.

I didn’t set out to paint a theory.

I was thinking about dementia peer groups—about those moments when no single person has “the answer,” and yet, somehow, something useful still emerges. Not from authority. Not from expertise. But from the way ideas move between us.

So I painted a circle.

Each shape is its own kind of thinking. Some are structured. Some are tentative. Some are decorative, almost playful. Some feel more grounded, others more like they’re reaching or searching. None of them are complete on their own.

But when they are placed together—held in a shared space—they begin to change.

They light up.

Not because they become the same, but because they interact. One person’s workaround sparks another person’s memory. Someone else reframes it. Another softens it. And gradually, what no one could solve alone becomes something we can carry together.

This is not efficiency.
It is not linear.
It does not look like what most of us were taught to recognize as “intelligence.”

And yet—it works.

This is what I’ve come to think of as synergistic intelligence.

Not a single mind getting stronger, but a network of partial understandings becoming enough.

In dementia spaces, this matters. Because so much of the world is built on the assumption that thinking must be linear, individual, and intact. But what I see—again and again—is that thinking can also be circular, shared, and adaptive.

The circle in this painting is not closed. There are openings, small tendrils reaching outward. That feels important. Because what happens in these groups doesn’t stay contained. It travels back out into daily life—into kitchens, into appointments, into quiet moments of confusion—and offers just enough structure to get through.

No one carries the whole.

But together, we make something that works.

And maybe that’s a different kind of intelligence altogether.

Not dependent on memory being intact.
Not dependent on speed.
Not dependent on one person holding the thread.

Instead, the thread is held between us.

Passed. Picked up. Rewoven.

The quieter forms of knowing come forward.
The relational ones.
The ones that listen as much as they speak.

The painting, in the end, became less about the individual shapes and more about the space between them—the invisible structure that allows them to interact.

That space is trust.
That space is time.
That space is permission.

And perhaps most of all—
that space is kindness.

HeartWrap by me, with ribbon colors emphasized thru ai help. Saved at Dewey/700/fam/TLK/HeartWrap26ai20260322Lo

Associated LINKS on my own Blogsite:

My personal Facebook profile is under the name “Truthful Kindness,” and you can find more about me on this blog under the “About” tab (although that page was posted long ago and also needs updating). >> https://truthfulkindness.com/about/about-me/

A Decade Later: the Power of Online Dementia communities

Attached Picture:

Yes; the cover photo is a digital painting of mine. This project began as digital painting i did 5 years ago about team strategizing process during video peer groups. Recently i asked for help from Ai then brought it back to my ProCreate workSpace for an additional 8 hours on details. The higher resolution picture shown below is available for free download from my Flickr acct at >> https://www.flickr.com/photos/194191353@N04/. Ai description of this digital painting: A ring of differentiated heart-forms moves in continuous exchange, each element holding its own shape while contributing to a larger system. The painting visualizes thinking as relational rather than individual—an emergent process formed through interaction, variation, and flow. The luminous palette reinforces the sense that ideas intensify through proximity, creating a shared intelligence that exceeds any single part.

Further Research Links on other sites:

Dementia Mentors’ vids at >> https://www.dementiamentors.org/videos.html ;

Dementia Chats’ vids at >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 ;

Teepa Snow at >> https://teepasnow.com/resources/for-people-living-with-dementia/ ;

Dementia Action Alliance at >> https://daanow.org/virtual-discussions/ ;

Contact Options.

* Admin issues:

Invested ?? hours on this text, plus ?? hours on art for this entry. ******* SUBSCRIPTION box is now at the bottom of each blog entry. … My own full legal name is Truthful Loving Kindness. My current formal diagnosis is still clinically at stage of “Mild Cognitive Impairment”, altho my Primary Care Physician and several other medical personnel disagree. In the past several years, my Primary Care Physician, Husband/Care-Partner, and Myself have agreed to quit seeing specialists for further clinical clarification of diagnosis and stage. Specialists are too far away, and the emotional roller-coaster causing stress is not worth it to me. My dementia symptoms are mostly Lewy Body and Vascular types of dementia symptoms, but SPECT and PET scans show my brain damage is currently most serious in the temporal lobes, which creates a lot of similarities with the Logopenic variant of PPA (a subtype of Fronto-Temporal type of dementia). Current theory for the cause of my dementia symptoms is 33 years of undiagnosed and untreated Lyme and Babesia (which specifically targets the brain functions) before 5 years of intensive treatment for tick-borne diseases, plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 2026Mar31. … You can find more about me in this blog under the “About Me” tab (although that page was posted long ago and also needs an update). Feel free to leave your thoughts here in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** 2026 i have begun to use “ChatGPT” editor; This improves readability and reduces the time I spend in the writing process. I am still on the “free” version of the blog (except for the domain name TruthfulKindness), so I notice there are now quite a few more advertisements on the page. Sorry. Currently in negotiations to transfer to the paid version of the blog to avoid advertisements. I have no control over which advertisements are shown. … ******* … I don’t mind re-posting of things I write, but if you re-post, then I expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and you must provide a very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com.

. *** … If there is an advertisement below, I have no control over what is shown.

*** categ: Communication, Jrnl, Relationships. *** tags: art, CarePartner Insights, Collective intelligence, communication, dementia, peer group, Persons Living with Dementia, PLwD, relationship, strategy. *** Add to Pgs/ (dont remember what this is, so i obviously have not done it yet, LOL) *** S&S Categ communication, relationship, research.

When the Clock Changes but the Body Doesn’t

Posted on March 19, 2026 by Truthful Kindness

Sometimes one hour is not just one hour; Routines are part of the safety architecture of the day.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for my blog at https://truthfulkindness.com/. If you have comments or questions, please use that website. Writing is harder now. i started using edit help from ChatGPT during Feb2026, which improves readability and reduces the time I spend in the writing process, but retains my writing style. I am still on the free version of this blog, which means more ads which i have no control over. I am working to move to the paid version to avoid advertisements.

This year’s shift to Daylight Saving Time seems to be hitting me harder than usual.

Three mornings in a row I have woken up already feeling slightly off, and only later realized why.

I had missed my early-morning protein drink — the one I rely on to bring my blood sugar back up after the night.

Each time the nausea is what reminds me.

That is my body’s signal that a step in the routine has been skipped.

The difficulty is not just that one step.

The entire day feels scrambled.

My internal clock is not yet ready for sleep when the alarm says it is time to begin the bedtime routine.

… then morning arrives before my body feels finished with the night.

So each part of the day carries a little more pressure. My routines that usually guide the day begin to feel rushed and slightly out of step … then they are a lot out of step.

This experience is not mine alone.

*** As my friend Rick Phelps, who is also living with dementia, writes about time changes, even a one-hour shift can disrupt sleep, increase confusion, and make late-day symptoms like sundowning more likely. The change may seem small on the clock, but it is not small to the brain. (See Link below)

*** And from the teaching of Teepa Snow’s organization, there is a similar reminder: when routines are disrupted, the brain has to work harder to make sense of the day. That extra effort can show up as irritability, fatigue, or distress — not because something is “wrong,” but because the system is under strain. (See Link below)

Living with dementia means that much of daily life depends on carefully built routines.

They are not just habits. They are part of the safety architecture of the day — helping me remember when to eat, when to rest, and when to do the small things that keep my body steady.

When the clock suddenly shifts, those supports wobble for a while until the body and the schedule learn each other again.

Usually the body catches up eventually.

Until then, I try to move a little more slowly and listen carefully to what it is telling me.

Update 14Mar2026: Last night (nearly a week after time change) i finally got a “normal” amount of sleep, and it was at least somewhere near my usual bedtime. So that is encouraging.

Links from Persons Living with Dementia:

Rick Phelps at >> https://www.agingcare.com/articles/daylight-saving-time-can-trigger-sundowning-212605.htm ;

Links from other EXPERTS:

Teepa Snow at >> https://teepasnow.com/blog/dementia-reducing-increased-risk-of-irritability-caused-by-time-changes/ ;

Administrative Notes

I did not track the exact hours invested in this entry. Started this blog entry 2026Mar10 and finished 2026Mar19.

The subscription box now appears at the bottom of each blog entry.

My full legal name is Truthful Loving Kindness.

My current formal diagnosis remains Mild Cognitive Impairment (MCI). However, due to long-term functional losses — including loss of employment and driver’s license — my Primary Care Physician and several other medical professionals consider my condition more consistent with progressive dementia. My symptoms primarily reflect Lewy body and vascular patterns, including REM sleep behavior disorder, hallucinations, and cognitive fluctuation.

Brain imaging (SPECT and PET) has shown significant temporal lobe involvement, creating overlap with logopenic variant Primary Progressive Aphasia (a subtype within the frontotemporal spectrum).

After years of specialist consultations, my family and I chose to discontinue further diagnostic pursuit. Travel distance and emotional cost outweighed potential benefit. My lived experience of neurologic change continues regardless of terminology.

A current working theory for contributing factors includes 33 years of undiagnosed tick-borne illness (Lyme and Babesia), followed by five years of intensive treatment.

You can learn more under the “About Me” tab (which is due for updating).

Comments are welcome. Please filter responses through truthful loving kindness toward all concerned.

Editing assistance: I currently use ChatGPT to improve readability and reduce writing time while retaining my voice and authorship.

This blog operates on a free platform (aside from the domain TruthfulKindness.com), and advertisements are automatically generated. I have no control over which ads appear. I am exploring transition to a paid plan to remove ads.

Categ: Important, Sx, Dementia Symptom Tips. Tags: Time Change, Body Clock, Lewy Body Dementia, Daily Routines, Cognitive Fatigue, Blood Sugar, Living with Dementia, Dementia Strategies, Safety Architecture, Life with Chronic Illness

Attached Picture: This clock picture started with painting i spent 9 days on (2026Mar10-19), then asked Ai to complete it for me, then brought it back over and made finishing touches. Don’t know why this took so many hours, but it was difficult for me. “Retain Routine” picture was finished by me on 2015Nov10 (for use in a previous blog entry).

Reposting Policy:
You are welcome to repost my writing provided that:

My legal name (Truthful Loving Kindness) is clearly credited.
It is clearly stated that the content was not written by you.
A prominent link to my website (http://www.truthfulkindness.com) is included.

If an advertisement appears below this entry, it is platform-generated and not endorsed by me.

Creating is How i Remain

Posted on February 23, 2026 by Truthful Kindness

(Dewey 740 – Art as Load-Bearing Wall). Summary (for orientation):
Dormant does not mean unfinished. This entry explains how art functions as adaptive architecture in my life with dementia.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder. i started using “Grammarly” to edit last month, but it sacrifices my particular writing style, so last week began using edit help from ChatGPT, which improves readability and reduces the time I spend in the writing process, but retains my writing style. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.

Recently I was looking at one of my winter tree paintings and at first I felt that familiar tug —
“it isn’t finished.”

The branches were visible.
No leaves.
White space in the center.
Bud-like tips, but no bloom.

For a moment my brain labeled it incomplete.

But then something shifted.

Dormant is not unfinished.

Winter is not failure.

Architecture before abundance is still architecture.

740 Winter Architecture

When my dementia symptoms first began, comparison became dangerous territory.

I had once drawn full architectural blueprints.
Submitted an entire set for our ADA Craftsman-style home.

(See Arts n Crafts Link in bottom section of blog.)

If I compare those drawings to what my hands can do now, I shrink.
If I compare earlier writing to present writing, I hesitate to continue.

Comparison drains life.

Creating restores it.

I have said more than once:

“Creating makes me feel alive.”

That was true before diagnosis.
It became essential afterward.

Over the years, art has changed form — but not function.

When tremors took my ability to tune my nevel harp, grief poured through my fingers.
Later, digital tools allowed me to stabilize those tremors and continue shaping color in “Harp of my Heart.”

(See “Harp of my Heart” Link in bottom section of blog.)

The instrument changed.
The medium changed.
The alive-ness did not.

When depth perception made eating messy, crochet collars became strategy. (See “Bib-Collar” Link in bottom section of blog.)

When memory interfered with crafting, I removed cabinet doors and used clear containers. (See “Crafting Tips” Link in bottom section of blog.)

Art is not separate from strategy.
It is adaptive architecture.

Even our cracked concrete kitchen floor became art.

(See “Floor as Memory Project” Link in bottom section of blog.)

The cracks were dramatic.
Nine years later, we turned them into a family footprint installation.

What could have been flaw became foundation.

That seems to be a recurring theme in my life.

Looking back, I notice something consistent in my art:

Curves dominate.
Swirls and curls.
Straight lines mostly connect the curves.

Arts n Crafts

Contained perimeters.
Complex interiors.
White space that allows breathing room.

Even my hearts are structured vessels, not sentimental overflow.
Even my trees reveal branches before bloom.

Structure holding through season.

So when I looked again at that winter tree, I stopped asking,
“Is it finished?”

And instead asked,
“What season is it in?”

Dormancy is honest.

Visible branches are honest.

Bud tips without leaves are honest.

In some ways, winter architecture may be the truest form — because you can see the structure clearly.

And perhaps that is what art has become for me:

A load-bearing wall.

Not decoration.

Not hobby.

Not busy-work.

Art is the architectural extension of self when language thins.
It is how I regulate intensity.
How I translate grief into pattern.
How I embed love into material.
How I remain.

Creating is not what I do.

It is how I remain.

Closing Question

Is there something in your life that feels “unfinished” —
that might simply be in its winter season?

What would shift if you viewed it as dormant architecture rather than failure?

— Truthful Loving Kindness

Associated Links on my own Blogsite: (2014-2021)

Arts ‘n Crafts after Dementia Diagnosis – Intro

Harp of my Heart

Bib-Collar as Strategy

Crafting Tips for Memory Symptom

Floor as Family Art MEMORY Project

Attached Picture:

This painting: Digital painting by me, finished on 22Jan2026, titled “Winter Architecture”. Created in Procreate using the stabilization tool to compensate for tremors. Alcohol ink–style brushes by Alaina Jensen were used to emulate fluid alcohol ink movement with Apple Pencil Pro. Final line work completed using Procreate’s default “Syrup” brush. Created as part of my ongoing work as a person living with Lewy body dementia, where art functions as adaptive architecture. Higher resolution image of painting available at my Flickr portfolio at >> https://www.flickr.com/photos/194191353@N04/ << .

Administrative Notes

I did not track the exact hours invested in this entry. Writing began four days ago, with an additional three days devoted to the artwork.

The subscription box now appears at the bottom of each blog entry.

My full legal name is Truthful Loving Kindness.

Brain imaging (SPECT and PET) has shown significant temporal lobe involvement, creating overlap with logopenic variant Primary Progressive Aphasia (a subtype within the frontotemporal spectrum).

A current working theory for contributing factors includes 33 years of undiagnosed tick-borne illness (Lyme and Babesia), followed by five years of intensive treatment, along with probable nocturnal seizures.

You can learn more under the “About Me” tab (which is due for updating).

Comments are welcome. Please filter responses through truthful loving kindness toward all concerned.

Editing assistance: I currently use ChatGPT to improve readability and reduce writing time while retaining my voice and authorship.

Reposting Policy:
You are welcome to repost my writing provided that:

My legal name (Truthful Loving Kindness) is clearly credited.
It is clearly stated that the content was not written by you.
A prominent link to my website (http://www.truthfulkindness.com) is included.

If an advertisement appears below this entry, it is platform-generated and not endorsed by me.

categ: Arts&Crafts, important, crucial, journal, and symptoms. tags: adaptive art, arts and crafts, assistive technology in art, cognitive fluctuation, digital art with tremor, dormancy, Lewy Body Dementia, living with dementia, resilience through art, structure and identity, winter architecture. Add to Pgs/??. S&S Categ: 1) identity, 2) purpose, 3) hobbies, and 4) hope.

Living with Lewy Body Dementia Symptoms: Understanding REM Sleep Behavior Disorder Dreams 2026a

Posted on February 8, 2026 by Truthful Kindness

Lewy Body Dementia (aka LBD) very frequently carries symptoms of REM Sleep Behavior Disorder (aka RBD) with ultra-vivid dreams that are often extremely negative. It is estimated that up to 75% of individuals with LBD experience symptoms of RBD and carry them at the earliest stages, highlighting its clinical significance. My “Under Siege” painting is about the perceived experience of being under fire, defending myself and others, running, escaping, people dying around me (especially loved ones and furr-family) almost EVERY night for years, often producing feelings of distress, numbing, and despair. The results of these emotions will be a separate blog entry. RBD is a core clinical feature of LBD.

Summary: This entry highlights the connection between Lewy Body Dementia and dreams of REM Sleep Behavior Disorder, including its personal impact and clinical context. The summary covers the prevalence, some of the symptoms, emotional effects, and treatment approaches.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder, so I have now begun to use “Grammarly” to edit. This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.

1am this morning: Exhausted with feelings of battle fatigue. Similar to so many nights in these past 25 years, Last night I got a total of 4 hours of very broken sleep. During those 4 hours, at various times, I was fighting for my life and those of others in mortal combat, surrounded by flames of fire, and responsible for getting a group of children to safety. Husband woke me twice because he could tell I was in distress, then I gave up on trying to sleep at 1 a.m. because I just could not face going back into that ultra-vivid, more real-than-daytime, horrid environment. Smells, sounds, tastes, … all of it adds to the feelings of despair and anger.

As of 12Jan2026, REM Sleep Behavior Disorder (RBD) has now been added to my medical record, but the symptom actually began about 1997, two years before my cognitive decline began. At that time, my husband made me bed rails because I kept waking up on the floor. After we moved and I began taking melatonin, that was not a problem. The ultra-vivid dreams that go with RBD (see reference above), more real than daytime events, have been part of my life ever since then, but the “acting out” aspect of those dreams has not been present. In January, I found out why.

“The (RBD) dreams often involve the perception of being chased or attacked by something or someone.”

NIH pamphlet on Lewy Body Dementia states that “The (RBD) dreams often involve the perception of being chased or attacked by something or someone.” That statement certainly matches my own experience during these past 25 years. Apparently, my medication was not controlling my symptoms well enough one night last month, and my muscles were no longer locked down to prevent movement. Someone was behind me, trying to kill me, and I hit them as hard as I could. Unfortunately i hit my Service Dog, who yelped and jumped off the bed. I have extreme sensitivity to Rx clonazepam (often recommended for RBD), but found out this month that one alternative treatment for RBD is melatonin, which I have taken for many years, self-medicating the acting-out factor of RBD symptoms. So the doctor simply increased my melatonin dosage, and I have had no further acting out of events from my dreams. See Link at the bottom of this entry.

“… it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.”

Stanford points out the similarities and differences between REM Sleep Behavior Disorder (RBD) and night terrors; “In these other disorders, the sleeper is usually confused upon waking up. He/she does not become rapidly alert. In contrast, it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.” Other comments are about common behaviors associated with RBD: “Shouting, swearing, flailing, grabbing, punching, kicking, jumping, leaping. Actions match the vivid dreams that they clearly recall. Sleep activities can result in an injury to patient or their bed partner. Uncommon (behaviors in RBD): walking, eyes open, leaving the room (those are all common signs of sleepwalking).” See Link at the bottom of this entry.

A 2013 article conclusion in Sleep Med addresses dream content differences between those involved with sleep walking/sleep terrors in contrast to those with REM Sleep Behavior Disorder (RBD); “Different threat simulations and modes of defense seem to play a role during dream-enacted behaviors (e.g., fleeing a disaster during SW/ST, counterattacking a human or animal assault during RBD), paralleling and exacerbating the differences observed between normal dreaming in nonrapid eye movement (NREM) vs rapid eye movement (REM) sleep.” See Link at the bottom of this entry.

Note from 2016 on repeating theme: Last night’s theme was being trapped in different locations. The night before, my Care-Partner was in danger. For almost two years, I had the repeating theme of living in a boxcar and rescuing different groups in varying post-apocalyptic environments. One installment involved a group of women, another a family, and another a little boy “target,” sometimes spread over three, four, or even eight installments in one night.

Living with Lewy Body Dementia and REM Sleep Behavior Disorder has profoundly shaped my nights and my days. Sharing these experiences is not only therapeutic for me but may also help others feel less alone in their journey. If you or someone you know is living with LBD or RBD, remember that understanding and support can make a real difference. Thank you for reading and walking this path alongside me.

Associated Links on my own Blogsite: (2014-2020)

Dementia Nightmares -TLK

Impact of Terrors and Dreams

Sleep Problems Again & Best Practices

Exhausted from Dreams

Complex Nocturnal Hallucinations incorrect term for symptom of Lewy Body

Hallucination Intro: Types of Hallucinations

Links to entries from other folks Living with Dementia of Lewy Body type:

Ken Clasper >> http://ken-kenc2.blogspot.com/2014/09/very-vivid-dreams-and-nightmares.html <<

Norrms at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/norman-mcnamara/sep-2015/ <<

Links to SOURCES used in this entry: Stanford and others.

“Hallucinations and REM Sleep Disorders in Parkinson’s Disease” – Lecture Notes

https://pmc.ncbi.nlm.nih.gov/articles/PMC6029467/

Sleep Med Link >> https://pubmed.ncbi.nlm.nih.gov/23601752/ <<

NIH Link >> https://www.nia.nih.gov/health/lewy-body-dementia/lewy-body-dementia-causes-symptoms-and-diagnosis <<

and “Science Direct” >> https://www.sciencedirect.com/science/article/pii/S0011502922001250#bib0047<< .

Further Research Links on other sites:

LBDA supplies this, which addresses RBD from ~12-20 minutes into the video.

Video below is from LBD Resource Center, with quite a few Lived Experiences, shared by care-partners of person living with LBD’s RBD:

Video below is from Parkinson’s Foundation of Excellence at Cleveland Clinic (but must increase volume):

Attached Picture:

This painting: Digital painting by me, finished on 07 Feb 2026, titled “Under Siege by RBD” (aka REM Sleep Behavior Disorder), which is a core clinical feature of Lewy Body type of dementia. These ultra-vivid dreams are almost always violent and more real than daytime activities. This painting is to go with my blog entry about RBD symptom. ~15 hours to complete. *** Used Alaina Jensen Acrylic Pour & Holo brushes on ProCreate application with Apple Pencil to compensate for my extreme tremors. Higher resolution image of painting available at my Flickr portfolio at >> https://www.flickr.com/photos/194191353@N04/ << .

Other contact options are FaceBook and “X” (aka Twitter), both under “Truthful Kindness”. On Reddit, i am at “TruthfulKindness” in groups “r/dementia”, “r/lewybodydementia”, and “r/alzheimers”. i dropped my LinkedIn membership quite a few years ago. If requesting “friend” status for any form of Social meedia, please send a private message explaining that you are a reader of my blog. …

* Admin issues:

Invested 13 hours on this text, plus 15 hours on art for this entry. ******* SUBSCRIPTION box is now at the bottom of each blog entry. … My own full legal name is Truthful Loving Kindness. My current formal diagnosis is still clinically at stage of “Mild Cognitive Impairment”, altho my Primary Care Physician and several other medical personnel disagree. In the past several years, We have agreed to quit seeing specialists for further clinical clarification of diagnosis and stage. Specialists are too far away, and the emotional roller-coaster is not worth it to me. My dementia symptoms are mostly Lewy Body and Vascular types of dementia symptoms, but SPECT and PET scans show my brain damage is currently most serious in the temporal lobes, which creates a lot of similarities with Logopenic variant of PPA (sub-type of Fronto-Temporal type of dementia). Current theory for the cause of my dementia symptoms is 33 years of un-diagnosed and un-treated Lyme and Babesia (which specifically targets the brain functions) before 5 years of intensive treatment for tick-borne diseases, plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 08Feb2026. … You can find more about me in this blog under the “About Me” tab (although that page was posted long ago and also needs an update). Feel free to leave your thoughts here in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** 2026 i have begun to use “Grammarly” editor; This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the “free” version of the blog (except for the domain name TruthfulKindness), so I notice there are now quite a few more advertisements on the page. Sorry. Currently in negotiations to transfer to the paid version of the blog to avoid advertisements. I have no control over which advertisements are shown. … ******* … I don’t mind re-posting of things I write, but if you re-post, then I expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and you must provide a very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com.

. *** … If there is an advertisement below, I have no control over what is shown.

categ: important/crucial & Sx/Dementia Symptom Tips. tags: behavior disorder, dementia, dreams, lewy body, Mental health, nightmares, persons living with dementia, RBD, sleep, symptom, terrors. Add to Pgs/ LBD, S&S Categ: Earliest symptoms, Mood, Sleep. Done/S&S but not LBD.

A Decade Later: the Power of Online Dementia communities

Posted on January 25, 2026 by Truthful Kindness

I often get questions on this topic, so I am prioritizing this update. In my first week of peer group video chat, I told my husband, “I discovered I am NORMAL — at least while I am in chat with these folks … and it is a WONDERFUL feeling!”

Ai summary of the article below: “This entry updates readers on the importance of online peer groups for people living with dementia. These platforms, like Facebook and Zoom, help form connections, reduce stress, and give access to collective wisdom and support. The post also discusses the positives and negatives of mixed groups of people with dementia and care partners, and highlights several advocacy organizations worth exploring.” — 1080 words. Read time ~6 minutes.

Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder, so as of TODAY I have begun to use “Grammarly” to edit. This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.

Communication and Community are vital for continued cognitive engagement, and online peer groups for people with dementia meet this need extremely well. My groups give me peers with similar experiences who understand me. Weekly or monthly video meetings create a sense of belonging, which is especially valuable as I live with dementia symptoms. These interactions provide meaningful connections and support.

In video chats with my peer groups, I feel “NORMAL” because we share similar experiences. This supportive environment reduces my stress and benefits my care-partner. Our members have a wide variety of occupations (e.g., retired doctors, pharmacists, attorneys, etc.). The collective experiences and wisdom in these groups allow us to discuss symptoms and solutions openly. Mentoring and advocacy discussions are energizing, and being in these groups has greatly improved my quality of life.

My primary peer interactions for dementia issues include my Facebook profile and Facebook Messenger, weekly Zoom video groups with Dementia Mentors, Dementia Action Alliance, Forget-Me-Not, and Living with Lewy (through LBDA), and then monthly Zoom video with Teepa Snow and the PAC team (see these Links at the bottom of this page).

For Dementia advocacy issues, I suggest Dementia Alliance International (though MCI diagnosis is not currently included in membership), Dementia Action Alliance, and, for generalized dementia advocacy, Norm Mac’s “The Purple Angel” on Facebook (see these Links at the bottom of the page).

“Mixed groups” are social media spaces with both Care-Partners and Persons Living with Dementia. These are great for seeking help from both sides and for understanding each other’s struggles. However, care-partner venting can be stressful for those with dementia, making us feel like a “burden”. I appreciate when care-partners label venting posts, so I can skip them and focus on issues where I can help with my experiences of care-Partnering … but even more with my 25 years of Lived experience with dementia symptoms and several hundred friends who freely share their own Lived experience with me. Scanning these posts drains energy and time, so I only help in small doses and only in the morning when I have the energy.

On Social Media, Besides my Facebook profile, i have interactions with Dementia Symptom Perspectives page, Lewy Body Dementia Association “Living With Lewy”, art groups, worship groups, and these “mixed” groups with both care-Partners and Persons Living with Dementia: Dementia Support And Advice Group, Dementia Caregiver Support & Activities for Challenging Behaviors, Dementia Caregiver Support & Activities for Challenging Behaviors … where i contribute. *** On Reddit, there are r/lewybodydementia, r/dementia, r/Alzheimers, and r/DementiaCarePartners.

One of the most surprising things to me was how much i learned within the first two weeks of attending Zoom video groups of the LBDA (Lewy Body Dementia Association). i already knew lots and lots about Lewy, but so much is not well publicized.

LINKS re above entry:

Dementia Mentors in Our Words

My old entry on this topic is below (2014Aug20):

Online Dementia Communities

Text Format – My Dementia Style

Dementia Mentors at this Link >> https://www.dementiamentors.org/ << … and “contact us” at this Link >> https://www.dementiamentors.org/contact-us.html <<

Dementia Action Alliance at this Link >> https://daanow.org/ <<

Dementia Alliance International at this Link >> https://dementiaallianceinternational.org/ <<

Living With Lewy (through LBDA) at >> https://www.lbda.org/local-support-groups/ <<

This cover photo was created by Ai, using multiple artworks that I painted. Then I pulled it into the Procreate app so I could finish it with Procreate tools on the iPad, which compensates for my tremors. Lots of my higher resolution paintings are available for free download from my Flickr account at this Link >> https://www.flickr.com/photos/194191353@N04/ <<

My 2025 painting “January Snow Man” is also used in this entry. You can read more about that from the Flickr Link above ^^.

LINKS most viewed in the past year:

Money Control with Dementia

LINKS most viewed recently are:

DRT: Yield to communication priorities; PWD “suffering” terminology

Symptom Flare

* Admin issues:

Invested 19 hours on this blog entry (not counting art time). ******* SUBSCRIPTION box is now at the bottom of each blog entry. … My own full legal name is Truthful Loving Kindness. My current formal diagnosis is still Mild Cognitive Impairment, but I have cerebrovascular disease and very slowly advancing Lewy Body Dementia symptoms, including REM Sleep Behavior Disorder and Hallucinations. SPECT scan showed targets of both temporal Lobes, along with the left high parietal Lobe. Current theory for the cause of my dementia symptoms is 33 years of Lyme and Babesia (which specifically targets the brain functions) before diagnosis and treatment, plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 2026Jan25 . … You can find more about me in this blog under the “About” tab (although that page was posted long ago and also needs an update). Feel free to leave your thoughts here in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … My personal Facebook profile is found under the profile name “Truthful Kindness”. Facebook comments are “FRIENDS ONLY”, so you might want to request Facebook friend status. If so, please send a private message explaining that you are a reader of my blog. … *** I am still on the “free” version of the blog (except for the domain name TruthfulKindness), so I notice there are now quite a few more advertisements on the page. Sorry. Currently in negotiations to transfer to the paid version of the blog to avoid advertisements. I have no control over which advertisements are shown. … ******* … I don’t mind re-posting of things I write, but if you re-post, then I expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and you must provide a very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com.

. *** … If there is an advertisement below, I have no control over what is shown.

Categories: Important & Symptoms. Tags: activity, cognitive decline, community, dementia, facebook, group, living-with-dementia, peer, PLwD, social-media. S&S Categ: Communication, Mentors, Relationship, Social interaction, Technology, Visits

PS of Ai short summary: “This entry updates readers on the importance of online peer groups for people living with dementia. These platforms, like Facebook and Zoom, help form connections, reduce stress, and give access to collective wisdom and support. The post also discusses the positives and negatives of mixed groups of people with dementia and care partners, and highlights several advocacy organizations worth exploring.” — 1080 words. Read time ~6 minutes.

Dementia Insights: My Journey and New Beginnings

Posted on January 18, 2026 by Truthful Kindness

Sorry i have been away from this blog nearly three years. i lost access to how to get in, and recently recovered the route.

Tru here. This entry is written by Truthful Loving Kindness (yes that is my full legal name) for publishing at https://truthfulkindness.com/ , so PLEASE direct any questions or comments to that website, regardless of which website shows these words. *** i am still on the “free” version of blog (except for domain name TruthfulKindness) so i notice there are quite a few more advertisements on the page, Sorry.

Ai summary of this article is “After nearly three years away from blogging, Truthful Loving Kindness has resumed writing due to a regained access to blog administration. Despite cognitive decline, the blog has garnered significant views. Improvements in personal health and ongoing construction projects are highlighted, along with a focus on maintaining hope while managing dementia.”

.Details.

My cognitive abilities have declined further in the last three years. Nevertheless, instead of bogging down this first entry, I will use more detail in later entries for each dementia category.

It has been almost three years since I’ve had access to my page for Blog Administration, so no changes to my blog itself during that time. But i have been extremely encouraged to discover the Blog articles have been regularly accessed during these past years even tho no new entries have been posted. 2024 had almost 8,000 views, and almost 10,000 views during 2025. By far, the most common views were to “Links for Symptoms & Strategies” at https://truthfulkindness.com/about/d-info/links-sx-strategies/ . So i will be trying to review the Links on that page for any “dead” Links, but i suspect it will take a while.

One of the biggest BLOG changes in the past two years is that Teepa Snow PAC team will be helping me with my blog. ((More about that later)). i plan to soon review some of the many drafts of blog entries (over 100 blog drafts) to see which ones i might be able to easily finish and post. i plan to begin with the earliest entries.

…

*** My general health is better. After 25 years of trying to lose weight, I finally began actually losing weight in 2024. There were many health complications. I have lost nearly 70 pounds, and returned to my pre-menopausal weight now, which brings many health benefits. Now the remaining challenge will be to see whether my weight can stabilize.

*** Service Dog is now 9.5 years old. We are beginning the search for a puppy. Hero will be 12 years old before the puppy can take on full mobility tasks.

*** After 23 years of construction we have now hired a helper, and our house is now in final stages of construction. We have been building as we afford it, with no mortgage. We feel really good about our DIY project. It includes a full upstairs for when a third care-partner is needed.

*** Made one small revision to Symptoms and Strategies Links page, but other than that there are no changes to my blog YET.

…

*** Art: I have loads of new digital paintings (made on ProCreate app) from the past two years. My best paintings are still available for free download at Flickr, https://www.flickr.com/photos/194191353@N04/ but i understand they changed policies for free accounts April 2025 so i am not sure how long that will continue. .

*** As a person living with dementia symptoms, keeping an outlook of HOPE is crucial to my well-being. Any book movie, etc. that has input in my brain must have Hope or i discard the idea of reading it, watching it, listening to the music, etc. Conversations and interactions inevitably occur that pull down my perspective, so I carefully manage my inputs and sleep opportunities, to ensure continuation of hopeful perspective.

LINKS re above entry:

Yes; the cover photo is a digital painting of mine from Feb2025.

***
Again, I mostly used AlainaJensen acrylic brushes , with Procreate tools on iPad that compensate for my tremors. This higher resolution picture shown below is available for free download from my Flickr acct at https://www.flickr.com/photos/194191353@N04/54302933584 .

HopeSnoDrop20250202 Description per Leonardo Ai on 11Jan2026: “Image is a digital illustration with a circular layout, featuring a central subject of a snowdrop flower emerging from a patch of snow. The background is a textured blend of icy blues and greens, creating a frosty, wintery atmosphere. At the top of the image, the word ‘hope’ is prominently displayed in a stylized, handwritten font, [[actually my own handwriting, LOL]] colored in a gradient of teal and green. The text is slightly curved, complementing the circular design. In the bottom right corner, the signature ‘Truthful L Kindness’ followed by ’02 Feb 2025′ is inscribed in a delicate, cursive script, adding a personal touch to the artwork. The overall composition conveys a theme of resilience and renewal, with the snowdrop symbolizing hope amidst the cold, wintry setting.”” –per Leonardo Ai on 11Jan2026

Click this Link for Teepa Snow >> https://teepasnow.com/ <<

About Me

LINKS most viewed recently are:

Links for Symptoms and Strategies

Focus on Essential Priorities

Verbal Comprehension Strategies Part 1

* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and very slowly advancing Lewy Body Dementia symptoms including REM Sleep Behavior Disorder. SPECT scan showed targets of both temporal Lobes, along with Left high parietal Lobe. Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 18Jan2026. … ******* … i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: art, Blog, cognitive decline, Dementia, lewy body, Life, living with dementia, Mental Health, PLwD, strategy, symptoms, Teepa Snow, Writing.

. *** … If there is an advertisement below, I have no control over what is shown.

S&S Categ n/a

PS: Ai summary of this article is “After nearly three years away from blogging, Truthful Loving Kindness has resumed writing due to a regained access to blog administration. Despite cognitive decline, the blog has garnered significant views. Improvements in personal health and ongoing construction projects are highlighted, along with a focus on maintaining hope while managing dementia.”

Living with dementia symptoms feels SLIPPERY

Posted on March 5, 2023 by Truthful Kindness

… precarious, elusive, undependable, insecure. — oh, and scrambled also, of course.

Tru here. This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.

******* Life has seldom felt more precarious and SLIPPERY than it does now. Not only from my sensory input, but also UNDERSTANDING that sensory input.

//embedr.flickr.com/assets/client-code.js

Understanding what i see is sometimes Fleeting and Precarious, so often unreliable.

Sight: My head bobbing up and down on my neck adds to difficulty in grabbing and securing what i see; i cannot stay still in order to stabilize my vision — it keeps changing. Plus i am SOoo frequently seeing bugs (even around my plate at the table) that it makes eating, and moving from place to place in the house more challenging. (Some people see small people or animals for visual hallucinations and illusions, but mostly i see bugs, LOL). — And Lately i have been forgetting that i experience hallucinations, so everything is “real”. Many (but not all) of my days are also spent with symptoms similar to tunnel vision.

Understanding what i hear is Fleeting and precarious. Seldom reliable.

Sound: Constant tinnitus, but my sound hallucinations are currently rare. Right now the problem is understanding what i hear; i often think something else is being said because noise is not properly organized by my brain. The sounds (figuratively) dumped upside-down in my brain bucket, then my brain gets to try to organize them into “That is the sound of the computer, fridge, etc” + “That is the sound of my tinnitus” + that is a dog sound + that is a voice word + another voice word . … And my brain is having more difficulty making thoughts and concepts out of those words. Currently doing better with written words than spoken words, but still only in very basic concepts. Poems and Jokes are frequently beyond me in either format. One moment i understand and then less than a second later that understanding has broken off. i might get the concept again, and i might not.

Still enjoy music – but must be smooth soft sounds and must not be at the same time as trying to understand something else; Less Likely to understand anything else if music is going. All efforts are mutually exclusive.

Sense of smell is mostly gone.

Sense of taste is mostly gone.

i can taste salty and sweet, but rarely taste foods; i can taste synthetic apple drink. i “taste” my morning egg, but if i remove the salt and pepper i do not taste anything. Eating is mostly a textural and visual experience — and almost always disappointing.

… So All-in-All, very few experiences are reliable except sense of TOUCH.

Stroking the dog’s fur. Hugs. Warm blankets. These things are stable and reliable. Right now these do not slip out of my grasp. They are REALITY in an environment of slippy-sliding experiences.

My understanding of anything other than touch is very VERY temporary, if at all; i might understand for a fraction of a moment — but then it is gone. if i continue to focus then i might understand again for a fraction of a moment — but then it is gone. etc. When you add the Physical instability of mobility complications (Falls, stumbles, etc) and that emphasizes how the Mental and Emotional precariousness can feel like the world is a very unstable, un-Safe place to be.

Some days we can be all perky and pour our energy into advocacy efforts, or into connecting with our peers, … but i have very few of those days now. There is also a time to recognize, acknowledge the losses, and take time to grieve those losses. Some days we barely have the energy to swallow some protein drink and make it to the bathroom. That is life.

Personal Note: Now i seldom have days that i feel ABLE to put words together for writing — no matter how long it takes. So i will be posting less often. Change is inevitable. i am looking for archival opportunities.

LINKS:

Prose by Truthful Kindness at https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/ ;

Sensory Challenges by Agnes Houston at https://youtu.be/U_L2107EweQ ;

Need for Touch by Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/need-for-touch/ ;

* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing. SPECT scan showed targets of both temporal Lobes, along with Left high parietal Lobe. Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 05Mar2023. Digital Painting by Truthful Kindness Titled “Slippery”; digital painting by Truthful Kindness on 2023Mar04, using iPad ProCreate app with Alaina Jensen’s Alcohol Brushes. … ******* … i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: ability, alzheimers, cognitive decline, dementia, insecure, living with dementia, mood, precarious, sensory processing, strategy, symptoms, . S&S categ: mood, sensory, touch

. *** … If there is an advertisement below, I have no control over what is shown.

Another Bad Day

Posted on January 23, 2023 by Truthful Kindness

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words. ******* We live on an ocean bluff, and fishing was one of the main bases of income for this town, so old fishing nets are not unknown as props. They are easy to find and useful. We have fishing nets thrown over our fence as trellis for roses, etc. In my mind, these painted fishing nets are my newest cognitive changes, separating me from doing the tasks that i was doing in the recent months.

//embedr.flickr.com/assets/client-code.js This digital painting copyright by Truthful Kindness on 19Jan2023. Available at https://flic.kr/p/2ocT7uS .

As some have noticed, my cognitive abilities have very strong fluctuations.
Monday was a bad day. This is Thursday; only three days later, and another very bad night last night, making for a bad day today.

SYMPTOMS:
My dementia symptoms are very strong today, so attempting tasks with much fine motor skills or cognitive involvement (including word interactions) usually causes more problems than benefits. Much stronger tremors, so more difficulty eating and more difficulty walking, as well as other fine-motor skills (like personal needs in the bathroom).

i needed help getting into “Prayer Chat” today, and after i did get into the Zoom video chat i had much more difficulty understanding what was said, even with only two other persons in chat room. So it is DEFINITELY not a day to attend a chat with more persons in chat room.

Usually not a wise decision to write on days like today, but i need to copy/paste for something else, so i might as well add as blog entry also.

STRATEGIES:

Symptoms are severe enough that it is not a day to even attempt tasks that require strong cognitive abilities, or tasks that require fine-motor skills (altho i am not quite to the point of needing someone to wipe my bottom on even days like today — not quite yet ). For eating, today i need mostly finger food or sippy-cup soup. Plan to spend the day cuddling the dog, and some of my most simple, abstract art projects. So i hope to connect the project as featured image on this page — but we will see what happens. … it took three hours to compile these words today; one of my quickest, but least complicated blog entries.

2018 “Bad Day Indicators” by Truthful Kindness at >> https://truthfulkindness.com/2018/04/09/bad-day-indicators-suggestions/ ;

* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing. Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 23Jan2023. Featured image (top image) is Digital Painting by Truthful Kindness Titled “Boundaries”. *** Two seizure-type cognitive events this week. This digital painting was done day after the late night event Wednesday night, to go with blog entry “Another Bad Day”. Needed to admit that i was no longer reliable for one of my advocacy tasks, and that is always difficult. ******* Used Alaina Jensen’s Fibre Brushes on this one. Copyright 19Jan2023. Bottom image is Copyright © Truthful L. Kindness on 12Oct2022 … ******* … i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: ability, alzheimers, change, cognitive decline, dementia, living with dementia, planning, strategy, symptoms, . S&S categ: planning

2022 Recent Additions including Art

Posted on December 30, 2022 by Truthful Kindness

This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words. i have not done an “Additions Update” since March, so …
Dementia awareness is a joint project from many groups of people. This entry is announcements for new and updated pages from Jennifer Bute, Theresa Montgomery, Cindy Odell, Truthful Kindness, Harry Urban, and Michelle Montgomery in my webSpace, … and new art not yet attached to webPages yet.

Above is a SnowFlake with names of folks included on newest Pgs; clockwise are Jennifer, Theresa, Cindy, Truthful, Harry, and Michelle. Digital Painting by Truthful Kindness on 29Dec2022 using iPad ProCreate app.

!! Remember, Links are in underlined colored text, not the pictures !!

Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are in colored text, NOT the pictures.

New Pages:

Adapt and Find Happiness from Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/adapt-2-happiness/ ;

Apathy at Christmas by Michelle Montgomery at https://truthfulkindness.com/index-persons-with-dementia-pwd/michelle-montgomery/apathy-christmas/ ;

Back on Track by Theresa Montgomery at https://truthfulkindness.com/index-persons-with-dementia-pwd/theresa-montgomery/back-on-track/ ;

“Christmas Spirit High” (and recent crafts) by Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/christmas-spirit-high/ ;

Doll-Babies by Jennifer Bute at https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/doll-babies/ ;

Feeling Vulnerable by Cindy Odell at https://truthfulkindness.com/index-persons-with-dementia-pwd/cindy-odell/feeling-vulnerable/ ;

Rude Word by Jennifer Bute at https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/x-rude-word/ ; .

LINKS re Early Symptoms of Dementia at https://truthfulkindness.com/about/d-info/links-sx-strategies/dx-early-sx-dementia/ ;

LINKS on Reasons to go for Early Diagnosis at https://truthfulkindness.com/about/d-info/reasons-4-early-dx/ ;

LINKS re Lyme Disease at https://truthfulkindness.com/about/life-other/med/lyme-notes-and-links/ ;

LINKS re Tick-Borne Diseases and Dementia at https://truthfulkindness.com/about/life-other/med/lyme-notes-and-links/tick-disease-dementia/ ;

Updated Quotes and LINKS about Holiday at https://truthfulkindness.com/2020/12/17/holiday-pgs/ ;

and

“Current Theory for my own Dementia Symptoms” at https://truthfulkindness.com/about/life-other/med/theory-d-sx-2022/ .

Notes NOT on my webspace;

Quote from Mike Oliver in his blog at MyVinylCountdown “… what have I learned in the six years? That it’s good to have a few pairs of stretch pants with an elastic waist band. Constipation and bloating are some of Lewy’s most uncomfortable symptoms, and you will be more comfortable with pants that stretch nicely at the waist. You know, the kind pregnant women wear. Two of my daughters have just had babies and I remember thinking at one point that golly gee I look more pregnant than they do.” at https://myvinylcountdown.com/2022/12/27/the-future-of-drug-sniffing-dogs-and-other-random-thoughts/ .

And special prose from my neurologist friend Daniel Potts; “Without Saying a Word” at https://danielcpotts.wordpress.com/2022/12/10/without-saying-a-word/ ;

Art not yet attached to WebPages:

(in this one particular section, instead of clicking on the text, for these pictures if you click the picture then it takes you to high-resolution photo at my Flickr project).

//embedr.flickr.com/assets/client-code.js

Above is “Ukraine Finding Peace in Turmoil” by Truthful Kindness.

//embedr.flickr.com/assets/client-code.js

Above is “Lighting the Way” by Truthful Kindness.

//embedr.flickr.com/assets/client-code.js

Above is “Bubbly Waves” by Truthful Kindness.

//embedr.flickr.com/assets/client-code.js

Above is “Connecting Strings” by Truthful Kindness.

//embedr.flickr.com/assets/client-code.js

Above is “Success thru Clouds of Confusion” by Truthful Kindness.

//embedr.flickr.com/assets/client-code.js

Above is “Holiday Family Music Train”, joint project by Truthful Kindness and daughter Charlene Davis-Gipson.

//embedr.flickr.com/assets/client-code.js

Above is “Kintsugi Ornament” by Truthful Kindness.

//embedr.flickr.com/assets/client-code.js

Above is titled “Petals in Pink”.

… and i have not done a “Selfie” in a year or two, so here is from Christmas day

* Admin issues:

SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing. Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 30Dec2022. Featured image is Digital Painting by Truthful Kindness on 29Dec2022 using iPad ProCreate app. This is a SnowFlake with names of folks included on newest Pgs. ((Spent ~11hrs on this art project and still not happy with it.)) … ******* … i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: na . S&S categ: na .

Person with Dementia Symptoms

Links to SOURCES used in this entry:

Contact Options:

Please pass on Dementia Awareness by Sharing:

I didn’t set out to paint a theory.

Associated LINKS on my own Blogsite:

Further Research Links on other sites:

Contact Options.

Please pass on Dementia Awareness by Sharing:

This year’s shift to Daylight Saving Time seems to be hitting me harder than usual.

Administrative Notes

Please pass on Dementia Awareness by Sharing:

Associated Links on my own Blogsite: (2014-2021)

Administrative Notes

Please pass on Dementia Awareness by Sharing:

“The (RBD) dreams often involve the perception of being chased or attacked by something or someone.”

“… it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.”

Associated Links on my own Blogsite: (2014-2020)

Links to entries from other folks Living with Dementia of Lewy Body type:

Links to SOURCES used in this entry: Stanford and others.

Further Research Links on other sites:

Attached Picture:

Please pass on Dementia Awareness by Sharing:

LINKS re above entry:

LINKS most viewed in the past year:

LINKS most viewed recently are:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

Please pass on Dementia Awareness by Sharing:

!! Remember, Links are in underlined colored text, not the pictures !!

Art not yet attached to WebPages:

Please pass on Dementia Awareness by Sharing: