Headache and Dementia

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Tru here.

This is a question I get asked often, and after answering it many times, I finally decided it was time to write everything down in one place.

I’ve recently been dealing with another multi-day headache. Unfortunately, this isn’t unusual for me. Over the years I’ve started noticing patterns—not only in my own life, but in conversations with many other people living with different forms of dementia.

One thing has become increasingly clear.

Headache is not considered a core symptom of most dementias. Yet for many people, headaches are part of daily life. Some causes are well understood. Others are only beginning to receive attention from researchers.

The Invisible Load

One of the biggest contributors may simply be the enormous amount of work our brains are doing.

Living with dementia often means:

  • Constant adaptation
  • Increased effort for tasks that once seemed automatic
  • Continual problem-solving throughout the day
  • Subconscious stress, even when we believe we’re coping well

That invisible work doesn’t stay only in the brain.

It often shows up physically.

Many of us develop tight muscles across the scalp, neck, shoulders, and jaw. The result may be tension headaches that feel like a tight band around the head, pressure behind the eyes, aching in the neck, or a heavy feeling that lasts for days.

Personally, I suspect this “invisible load” explains a great many of the headaches experienced by people living with dementia.

Migraine and Dementia

Researchers have also found that people with a history of migraine appear to have a somewhat higher risk of developing dementia, including Alzheimer’s disease.

This does not mean migraines cause dementia.

Instead, scientists suspect there may be shared neurological or vascular factors that increase the likelihood of both conditions in some people.

For those individuals, migraine symptoms and dementia-related changes may overlap, making diagnosis and treatment more complicated.

Vascular Dementia and Stroke

Headache can become especially important in vascular dementia.

A sudden, severe, unexplained headache may be a warning sign of stroke and should never be ignored.

Some people also develop persistent or recurring headaches after a stroke.

In this situation, headache is much more than a source of discomfort—it may signal an urgent medical problem or reflect changes that occurred during a previous stroke.

Lewy Body Dementia

Within Lewy body dementia support groups, headaches are discussed surprisingly often, even though they are not considered a defining symptom of the disease.

People frequently describe:

  • Persistent pressure headaches
  • Head pain following sensory overload
  • Headaches triggered by bright light, loud sounds, visual stimulation, or mental fatigue

Although research has not yet established headaches as a characteristic symptom of Lewy body dementia, these experiences make neurological sense.

People living with Lewy body dementia often experience heightened sensory sensitivity, autonomic nervous system dysfunction, sleep disruption, muscle tension, and fluctuating brain function—all of which may contribute to headaches.

Whether headaches are directly related to the disease itself or result from these associated changes remains an important question for future research.

Hydrocephalus: An Important Condition to Consider

Hydrocephalus deserves special attention because it can sometimes resemble dementia.

In normal pressure hydrocephalus (NPH) and other forms of hydrocephalus, headaches or a constant feeling of pressure inside the head are commonly reported.

Medical textbooks often describe the classic triad of NPH as:

  • Difficulty walking
  • Cognitive decline
  • Urinary problems

Yet many people also describe:

  • Ongoing head pressure
  • A feeling of fullness inside the head
  • Persistent headaches

This matters because some forms of hydrocephalus are potentially treatable. Whenever symptoms suggest this possibility, it deserves careful medical evaluation.

Frontotemporal Dementia (FTD)

Very little research has specifically examined headaches in frontotemporal dementia.

However, people living with FTD do report headaches, and it seems reasonable that neurological changes, emotional stress, muscle tension, and the effort required to compensate for changing abilities may all contribute.

This is one of those areas where lived experience appears to be ahead of published research.

Lived Experience

Research is important, but it isn’t the whole story.

Sometimes the people living with a condition begin noticing patterns years before those patterns are formally studied.

Over the years, I’ve heard many people with dementia describe recurring headaches. Their diagnoses differ. Their personalities differ. Yet the experience itself comes up again and again.

One example comes from my friend Marion James, who wrote about how much she had lost because of dementia—driving, independence, keeping track of everyday things, and the frustration that followed. Then she shared a simple observation that caught my attention:

“My headaches are gone. Not so much forgetfulness. I’m so excited; it feels like I am in a whole new world.”

Marion wasn’t trying to prove anything scientifically. She was simply describing what happened in her own life. You can read her full story, “The Hardest Thing for Me,” elsewhere on this website.

Another friend, DonnaLynn, wrote very differently. She described living with young-onset Alzheimer’s disease while struggling with loss of independence, fear of being misunderstood, and increasing isolation. In the middle of all of that she wrote:

“I also have a continuous headache. I think it is the atrophy in my brain getting worse. I am not sure.”

Those final words are important:

“I am not sure.”

None of us can know exactly what caused her headaches. They may have been related to stress, tension, sensory overload, medication, another medical condition, or something researchers have not yet identified.

But her experience reminds us that persistent headaches are part of daily life for many people living with dementia—even if they receive very little attention in medical literature.

One day, research may explain more of these experiences.

Until then, listening carefully to people who are actually living with dementia remains one of our most valuable sources of understanding.

Other Possible Contributors

Not every headache is caused by dementia itself.

Other common contributors include:

  • Medication side effects
  • Dehydration
  • Poor nutrition
  • Sleep disruption
  • Eyestrain
  • Blood pressure changes
  • Medication overuse
  • Anxiety and emotional stress

Often several of these factors occur together.

When Headaches Need Prompt Medical Attention

Most headaches are not emergencies, but some should be evaluated immediately.

Seek medical attention promptly if a headache is:

  • Sudden and unusually severe
  • A completely new type of headache
  • Accompanied by significantly increased confusion beyond your usual baseline
  • Associated with weakness, vision changes, speech difficulties, or numbness
  • Occurring after a fall or head injury

When in doubt, it’s always safer to be evaluated.

Closing Thoughts

Headache may not appear on the short list of defining dementia symptoms, but that doesn’t mean it isn’t part of daily life for many of us.

Some headaches have well-established medical explanations.

Others are still being studied.

And some are patterns that people living with dementia have recognized long before researchers have had the opportunity to investigate them.

Perhaps one day researchers will understand why so many of us speak of headaches.

Perhaps they will discover connections we cannot yet explain.

Until then, we continue doing what people living with dementia have always done.

We notice.

We share.

We learn from one another.

And together, we slowly help light the path for those who will walk this road after us.

Because every honest story becomes a small lantern.

And enough lanterns…

can light an entire path.

***

.

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/

Marion’s at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/marion-james/sep-2015/ ;

DonnaLynn’s at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/donnalynn-morin/june-2015/ ;

Attached Picture:

Yes; the cover photo “Every Story Matters” is a July2026 collaboration from four of my digital paintings put together. Again, I mostly used AlainaJensen brushes on those paintings, with Procreate tools on iPad that compensate for my tremors.

Sources and Further Reading

This article combines:

  • My own lived experience with dementia.
  • Conversations over many years with people living with different forms of dementia.
  • Current medical understanding regarding migraine, stroke, vascular dementia, hydrocephalus, and related neurological conditions.
  • Stories shared by Marion James and DonnaLynn, reproduced elsewhere on this website with permission or as previously archived.

Additional information can be found through organizations such as:

  • Lewy Body Dementia Association (LBDA)
  • Alzheimer’s Association
  • National Institute on Aging (NIA)
  • Hydrocephalus Association
  • American Stroke Association

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 Notes — This entry began in 2021, and is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. The subscription box is now located at the bottom of each blog entry. My full legal name is Truthful Loving Kindness. My current formal diagnosis remains at the stage of Mild Cognitive Impairment, although my Primary Care Physician and several other medical professionals consider it some form of dementia; my PCP records currently state “Dementia without behavioral disturbance, unspecified dementia type.” In recent years, my PCP, my husband/care-partner, and I have jointly decided to discontinue specialist consultations, as the distance and emotional strain of repeated evaluations are not worth the cost to my well-being. My symptoms most closely resemble Lewy Body and vascular dementia patterns; however, SPECT and PET imaging show the most significant brain changes in the temporal lobes, creating overlap with the logopenic variant of Primary Progressive Aphasia (PPA), a subtype within the frontotemporal dementia spectrum. Nothing in this blog is meant as medical, legal, or service dog advice; what I share here comes from lived experience—an attempt to design around decline and make daily life more workable—so please use your own judgment and consult professionals who understand your specific situation. Text Copyright © Truthful L. Kindness, 02Aug2026. You can learn more about me under the “About Me” tab (note: that page is due for updating). Comments are welcome—please filter them through truthful loving kindness toward all concerned. As of 2026, I use ChatGPT as an editor, which improves readability and reduces the time I spend in the writing process. I do not mind re-posting of my work; however, if you do re-post, you must clearly indicate that the writing is not your own, prominently identify my authorship as Truthful Kindness, and include a clear link to my website so that questions and comments can be directed to me personally: at http://www.truthfulkindness.com.

*** categ: important, Sx, Dementia Symptom Tips, Lewy, vascular. *** tags: dementia, headache, hydrocephalus, LBD, lewy body, living with dementia, migraine, PLwD, stroke, symptoms, vascular, vascular dementia. *** S&S Categ physical pain, medical issues, research.

The Rotating Weather of Lewy

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Yesterday was bubbly with excitement. One of those rare bright days where ideas move quickly, possibilities feel open, and the mind feels almost light again.

Then came the night.

I slept perhaps two hours before Lewy reclaimed the darkness.

RBD (REM Sleep Behavior Disorder) involves physically acting out vivid dreams during sleep.

For much of March, I battled RBD dreams nearly every night.
Then, beginning March 26, it disappeared completely—until last night. I began quietly wondering if perhaps that particular storm system had finally moved on.

But the nights were never truly calm.

Instead, the symptoms seemed to rotate.

During those weeks without RBD, I instead battled repeated charley-horse type episodes in my feet — sometimes two to six times a night — along with strange temperature disorientation. I could no longer reliably tell whether I was too hot or too cold. Blankets came on. Blankets came off. The body and brain no longer seemed to agree on what the temperature actually was.

Sometimes the rotation is stranger still:
not more confusion,
but more distortion.

Thinking itself may remain relatively intact while vision and sound processing become unstable instead. Sound becomes oddly layered or distant. Vision lags or distorts. The world itself can begin to feel slightly out of synchronization.

The storm does not always hit the same system.

Then last night, after weeks of silence, RBD suddenly returned. Four episodes in a single night.

At 3am, I finally stopped trying to salvage sleep and simply began the day.

I do not know whether symptoms truly “transfer,” medically speaking. But many of us living with Lewy seem to experience something like rotation. One symptom cluster dominates for a while, then quiets as another moves forward into the spotlight.

Not gone.
Not cured.
Simply rearranged.

Lewy rarely moves in straight lines.

Symptoms can vanish for days or weeks, only to return unexpectedly. Improvement in one area may arrive beside worsening somewhere else. Sometimes it feels less like healing or decline, and more like constantly shifting weather patterns moving through the same landscape.

This unpredictability can be emotionally confusing. During good stretches, hope quietly begins to rise. We begin cautiously trusting a little stability again.

Then suddenly, in the middle of the night, old doors reopen.

I think many people misunderstand neurological illness because they expect consistency. But fluctuation is often the reality. The brain does not always fail in orderly ways.

Sometimes it changes costumes instead.

And so we adapt again.

We learn not to measure progress by yesterday’s weather.

Only by whether we are still finding our way through today’s.

One night at a time.

.

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/ .

Understanding RBD Sleep Behavior Disorder at >> https://truthfulkindness.com/2026/02/08/lewy-lbd-rem-sleep-dreams-2026a/ ;

Hallucination intro at >> https://truthfulkindness.com/2020/01/26/hallucination-types/ ;

More Toilet issues at >> https://truthfulkindness.com/2022/12/04/more-toilet-issues/ ;

Attached Picture:

This painting “LewyMind Weather” was created Jan2023 – years before I found the words to describe what it was trying to say. Again, I mostly used AlainaJensen Acrylic brushes, with Procreate tools on iPad that compensate for my tremors.

Further Reading and Related Concepts on other sites:

For readers who would like to learn more about the many ways Lewy body dementia symptoms can fluctuate, the Lewy Body Dementia Association provides an excellent overview: Understanding Lewy Symptoms. >> https://lbda.org/symptoms ;

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:

* Admin Notes — Began project 2026May07. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. The subscription box is now located at the bottom of each blog entry. My full legal name is Truthful Loving Kindness. My current formal diagnosis remains at the stage of Mild Cognitive Impairment, although my Primary Care Physician and several other medical professionals consider it some form of dementia; my PCP records currently state “Dementia without behavioral disturbance, unspecified dementia type.” In recent years, my PCP, my husband/care-partner, and I have jointly decided to discontinue specialist consultations, as the distance and emotional strain of repeated evaluations are not worth the cost to my well-being. My symptoms most closely resemble Lewy Body and vascular dementia patterns; however, SPECT and PET imaging show the most significant brain changes in the temporal lobes, creating overlap with the logopenic variant of Primary Progressive Aphasia (PPA), a subtype within the frontotemporal dementia spectrum. Nothing in this blog is meant as medical, legal, or service dog advice; what I share here comes from lived experience—an attempt to design around decline and make daily life more workable—so please use your own judgment and consult professionals who understand your specific situation. Text Copyright © Truthful L. Kindness, 2026July19 . You can learn more about me under the “About Me” tab (note: that page is due for updating). Comments are welcome—please filter them through truthful loving kindness toward all concerned. As of 2026, I use ChatGPT as an editor, which improves readability and reduces the time I spend in the writing process. I do not mind re-posting of my work; however, if you do re-post, you must clearly indicate that the writing is not your own, prominently identify my authorship as Truthful Kindness, and include a clear link to my website so that questions and comments can be directed to me personally: at http://www.truthfulkindness.com.

*** categ: Journal, Symptoms, Dementia Symptom Tips, Lewy; *** tags: autonomic dysfunction, cognitive change, dementia, fluctuation, lewy body, person with dementia, persons living with dementia, PLwD, sound processing, vision changes; *** S&S Categ: Sleep, Invisible Symptoms

Dementia Friends – What They Have Given Me

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There are people who walk beside you for a season,
and there are people who change the way you understand the path itself.

Tru here.

My dementia friends did not come into my life quietly.
They came with courage, with truth, with adaptations, with humor that refused to disappear.
They came while losing things the world assumes cannot be lost.

And still—they gave.

They gave me language
when mine was beginning to falter.

They gave me strategies
when my systems began to fail.

They gave me companionship
in a terrain that can feel impossibly alone.

But more than that—

They gave me a way to see.

Not dementia as only decline,
but as something that asks for redesign.
Not as an ending,
but as a narrowing path that still holds meaning, dignity, and even beauty.

From each of them I received pieces that I now carry:

  • strength, when continuing felt uncertain
  • wisdom, when things no longer made sense
  • endurance, when the days stretched long
  • empathy, for myself and for others walking this path
  • strategy, because survival here is not accidental—it is built

These were not small gifts.
They were survival tools.
They were ways of remaining human inside change.

Some of my friends are no longer physically here.

But that is not the same as gone.

Their words remain.
Their work remains.
Their ways of adapting remain.

And in a very real sense—
they continue inside the way I now live.

Sometimes I hear them in the strategies I now pass forward to others.

This image holds pieces of that truth.

Love does not end here.
It changes… and remains.

If you are reading this,
and you have walked beside someone with dementia—

then you know.

Your heart holds many things at once.

And you did not walk this path alone.

.

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/

Attached Picture:
Digital mixed-media artwork created April 2026 from elements in seven of my original digital paintings.

The higher-resolution version shown below is available for free download from my Flickr account at >> >> https://www.flickr.com/photos/194191353@N04/. Please feel free to share this image with others walking dementia grief journeys.

Where Love Goes Next

Above reads:

When someone you love lives with dementia, and then dies, your heart holds so much.

There is love. There is grief. There is relief. There is remembering. … and there is the ache of all the things left unsaid or undone.

Be gentle with your heart. There is no right way to carry this kind of love or this kind of loss.

Let yourself feel it all. You are not alone. You are not forgetting.

You are not letting go of love — it is always with you.

Take each day one gentle breath at a time. Your love made a difference. It always will.

You are seen. You are held. You are loved.

Memoriam Index at >> https://truthfulkindness.com/memoriam/ <<

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:

* Admin Notes — Finished this entry 2026Apr25, but did not publish until 2026June01. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. The subscription box is now located at the bottom of each blog entry. My full legal name is Truthful Loving Kindness. My current formal diagnosis remains at the stage of Mild Cognitive Impairment, although my Primary Care Physician and several other medical professionals consider it some form of dementia; my PCP records currently state “Dementia without behavioral disturbance, unspecified dementia type.” In recent years, my PCP, my husband/care-partner, and I have jointly decided to discontinue specialist consultations, as the distance and emotional strain of repeated evaluations are not worth the cost to my well-being. My symptoms most closely resemble Lewy Body and vascular dementia patterns; however, SPECT and PET imaging show the most significant brain changes in the temporal lobes, creating overlap with the logopenic variant of Primary Progressive Aphasia (PPA), a subtype within the frontotemporal dementia spectrum. Nothing in this blog is meant as medical, legal, or service dog advice; what I share here comes from lived experience—an attempt to design around decline and make daily life more workable—so please use your own judgment and consult professionals who understand your specific situation. Text Copyright © Truthful L. Kindness, 2026 . You can learn more about me under the “About Me” tab (note: that page is due for updating). Comments are welcome—please filter them through truthful loving kindness toward all concerned. As of 2026, I use ChatGPT as an editor, which improves readability and reduces the time I spend in the writing process. I do not mind re-posting of my work; however, if you do re-post, you must clearly indicate that the writing is not your own, prominently identify my authorship as Truthful Kindness, and include a clear link to my website so that questions and comments can be directed to me personally: at http://www.truthfulkindness.com.

*** categ: memorial, jrnl, relationships. *** tags: community, dementia, grief, legacy, Lewy Body Dementia, loss, peer support, Persons Living with Dementia, PLwD, relationship *** Add to Pgs/ Memoriam index. *** S&S Categ Grief, Relationship

More Than One Thing Can Be True

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Lately i have been thinking about why paintings sometimes communicate things that words cannot.

Tru here.

Words usually happen one thing at a time.

One sentence. One direction. One thought following another.

But life is often not like that.

Especially with grief, dementia, trauma, chronic illness, caregiving, neurodivergence, or overwhelming emotion.

Sometimes many things are happening inside a person at once.

Fear. Love. Confusion. Recognition. Beauty. Exhaustion. Hope. Grief.

All at the same time.

.

A painting can hold that more easily than language can.

A painting can say: “I am struggling” and “I am still here” at the same time.

It can contain: fragmentation and connection, motion and stillness, confusion and recognition, fear and beauty.

Without forcing one to disappear.

.

As my verbal comprehension has declined, i have depended more and more on visual communication. … a heart wrapped, some version of prayer hands, some version of grief expression, or thanksgiving.

At first i thought pictures were simply replacing words.

Now i am not so sure.

Maybe some experiences are simply too layered to fit neatly into language.

Words often require sequence.

But experience does not always arrive in sequence.

.

Sometimes confusion does not mean absence of thought.

Sometimes it means too much is happening at once.

Memory. Emotion. Noise. Recognition. Sensory overload. Physical discomfort. Relational tension. Fear of failure. Trying to keep up. Trying to appear normal.

All competing at the same time.

From outside, it may only look like confusion.

Inside, it can feel more like traffic.

.

That is part of why visual expression can feel safer.

Shapes, color, texture, and movement can communicate several things at once.

They do not always demand neat order.

.

Sometimes even diagnosis becomes hard to separate cleanly.

Many of us in neurological or chronic illness communities are not living with one isolated condition.

Where does Lyme disease end and dementia begin?

Where do autonomic symptoms separate from neurological symptoms?

Where does inflammation affect emotion? Where does exhaustion become cognitive overload? Where does grief affect memory?

Often nobody fully knows.

The body does not separate itself into tidy categories.

Everything influences everything else.

Neurological. Immune. Emotional. Sensory. Physical. Relational.

Sometimes several realities are happening together.

.

That uncertainty can be frightening.

But it can also teach humility.

Not everything separates cleanly.

Not every truth arrives one piece at a time.

.

That may be part of why abstraction has become increasingly important to me.

Abstract art does not always try to explain.

Sometimes it simply holds experience.

Not solved. Not corrected. Not fully organized.

Just honestly present.

.

Perhaps that is why so many people facing neurological illness, grief, trauma, or overwhelming emotion are drawn toward: music, painting, rhythm, texture, movement, or symbolic imagery.

Not because words are bad.

But because some human experiences are too alive, too layered, and too simultaneous to fit cleanly into sentences.

.

Sometimes more than one thing can be true at the same time.

And sometimes a painting can hold that truth more gently than words can.

*******

.

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/

More Than One Truth Simultaneously

Attached Picture:

Yes; the cover photo is a digital painting of mine finished 2026May07. I mostly used AlainaJensen alcohol ink brushes , with Procreate tools on iPad that compensate for my tremors. The higher resolution picture shown above is available for free download from my Flickr acct at >> https://www.flickr.com/photos/194191353@N04/.

.Links used in this entry (in this case to avoid repetition, LOL)

Pictures as Words by Tru at >> https://truthfulkindness.com/2019/04/08/pictures-words/ <<

When Confusion Overwhelms Communication at >> https://truthfulkindness.com/2021/01/23/commun-4/ <<

Verbal Comprehension Strategies part 3 at >> https://truthfulkindness.com/2019/10/20/verbal-comprehension-strategies-3/ <<

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 Notes — This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. The subscription box is now located at the bottom of each blog entry. My full legal name is Truthful Loving Kindness. My current formal diagnosis remains at the stage of Mild Cognitive Impairment, although my Primary Care Physician and several other medical professionals consider it some form of dementia; my PCP records currently state “Dementia without behavioral disturbance, unspecified dementia type.” In recent years, my PCP, my husband/care-partner, and I have jointly decided to discontinue specialist consultations, as the distance and emotional strain of repeated evaluations are not worth the cost to my well-being. My symptoms most closely resemble Lewy Body and vascular dementia patterns; however, SPECT and PET imaging show the most significant brain changes in the temporal lobes, creating overlap with the logopenic variant of Primary Progressive Aphasia (PPA), a subtype within the frontotemporal dementia spectrum. Nothing in this blog is meant as medical, legal, or service dog advice; what I share here comes from lived experience—an attempt to design around decline and make daily life more workable—so please use your own judgment and consult professionals who understand your specific situation. Text Copyright © Truthful L. Kindness, 2026May08. You can learn more about me under the “About Me” tab (note: that page is due for updating). Comments are welcome—please filter them through truthful loving kindness toward all concerned. As of 2026, I use ChatGPT as an editor, which improves readability and reduces the time I spend in the writing process. I do not mind re-posting of my work; however, if you do re-post, you must clearly indicate that the writing is not your own, prominently identify my authorship as Truthful Kindness, and include a clear link to my website so that questions and comments can be directed to me personally: at http://www.truthfulkindness.com.

*** categ: Arts&Crafts, Sx, Jrnl. <10 *** tags: abstract art, chronic illness, cognitive overload, communication, dementia, lewy body, neurodivergence, overlapping realities, person with dementia, PLwD, visual communication. *** S&S Categ: Non-Verbal communication, Confusion

Project Launch — The Changing Mind & Brain: Inside & Between

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I’ve been working quietly on something for a long time now.
Not a single post, not a single story—but something larger that has been slowly forming underneath all the writing.

This is the beginning of that project.

Tru here.

What this is

This project is an attempt to describe cognitive change from the inside—
not just what it looks like, but what it feels like,
how it affects perception, decision-making, energy, identity, and relationships.

And just as importantly:

It is about what happens between people when one mind and brain are changing and the other is not.

Because that space—between—is where much of the confusion, frustration, and unintended harm lives.

Why this matters

One of the reasons for this project is something I keep running into:

Frequent misunderstandings and misdiagnoses between dementia symptoms and mental health conditions.

When we say “mind” alone, it is often interpreted through a mental health lens.
When we say “brain,” it points more clearly to neurological change.

Both matter.

And when the distinction is not understood, people can be:

  • misinterpreted
  • misdiagnosed
  • or supported in ways that do not match what is actually happening

This is not a small issue.
It affects care, relationships, and outcomes.

What makes this different

This is not only my voice.

Woven into this project are written contributions from others living with dementia symptoms—
people describing their own internal experiences in their own words.

Because no single perspective is enough.

Patterns begin to emerge when multiple voices are heard:

  • similarities across different types of dementia
  • differences that matter
  • and insights that are often missed from the outside

This is shared lived experience, not observation from a distance.

What this project is trying to do

This work is not about fixing the person.

It is about:

  • understanding the mechanics of what is changing in the brain,
  • recognizing how that is experienced in the mind,
  • and seeing where expectations no longer match reality

From there, the goal is to design differently—
in communication, environment, and support—

so that dignity, safety, and energy are preserved as much as possible.

Where this is going

This will unfold over time.

Some pieces will come from my own past blog entries.
Some will be newly written.
Some will connect ideas that didn’t make sense before, but do now.

Some will be written by me.

Some will be written by others living with dementia symptoms.

… and a few will be written by care-partners in this journey with us.

Eventually, this work is forming into a set of books, but right now, it is still becoming.

For those walking this path

If you are living with cognitive change,
or walking alongside someone who is—

you are not imagining the disconnect.

There is a gap in understanding.
Between mind and brain.
Between people.

And it can be bridged.

That is what this project is about.

More to come.

— Tru

Attached Picture:

Yes; the cover photo is a digital painting of mine from 2026May02. For this one i mostly used AlainaJensen chalk brushes , with Procreate tools on iPad that compensate for my tremors.

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:

* Admin Notes — Lost my notes; no idea how many hours invested on this text, plus 16 hours on art for this entry. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. The subscription box is now located at the bottom of each blog entry. My full legal name is Truthful Loving Kindness. My current formal diagnosis remains at the stage of Mild Cognitive Impairment, although my Primary Care Physician and several other medical professionals consider it some form of dementia; my PCP records currently state “Dementia without behavioral disturbance, unspecified dementia type.” In recent years, my PCP, my husband/care-partner, and I have jointly decided to discontinue specialist consultations, as the distance and emotional strain of repeated evaluations are not worth the cost to my well-being. My symptoms most closely resemble Lewy Body and vascular dementia patterns; however, SPECT and PET imaging show the most significant brain changes in the temporal lobes, creating overlap with the logopenic variant of Primary Progressive Aphasia (PPA), a subtype within the frontotemporal dementia spectrum. Nothing in this blog is meant as medical, legal, or service dog advice; what I share here comes from lived experience—an attempt to design around decline and make daily life more workable—so please use your own judgment and consult professionals who understand your specific situation. Text Copyright © Truthful L. Kindness, 2026May03. You can learn more about me under the “About Me” tab (note: that page is due for updating). Comments are welcome—please filter them through truthful loving kindness toward all concerned. As of 2026, I use ChatGPT as an editor, which improves readability and reduces the time I spend in the writing process. I do not mind re-posting of my work; however, if you do re-post, you must clearly indicate that the writing is not your own, prominently identify my authorship as Truthful Kindness, and include a clear link to my website so that questions and comments can be directed to me personally: at http://www.truthfulkindness.com.

*** categ: Bks, Jrnl. *** tags: brain health, caregiver support, caregiving, cognitive change, communication, dementia, dementia awareness, diagnosis, lived experience, misdiagnosis, Persons Living with Dementia . *** Add to Pgs/ AbtBlog/Bks *** S&S Categ: Bks

The Symptom No One Mentions; Runny Nose

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… 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. Almost everyone in my Lewy Body group has this symptom, but not much is written about it.

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.

Handkerchief 2026

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

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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.

Thinking Heart to Heart

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.

Thinking Heart to Heart

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.

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 ?? 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

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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.

Text copyright © Truthful L. Kindness, 19 Mar 2026.
Painting copyright © Truthful L. Kindness, 19 Mar 2026.

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:

  1. My legal name (Truthful Loving Kindness) is clearly credited.
  2. It is clearly stated that the content was not written by you.
  3. 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

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(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. 

WintrArchitctr 20260122

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
WintrArchitctr 20260122

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.

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, along with probable nocturnal seizures.

Text copyright © Truthful L. Kindness, 23 Feb 2026.
Painting copyright © Truthful L. Kindness, 22 Jan 2026.

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.

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

  1. My legal name (Truthful Loving Kindness) is clearly credited.
  2. It is clearly stated that the content was not written by you.
  3. 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

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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.

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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

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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/ << .

Under Siege by RBD

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.

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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.

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.

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