When the Window DoesNot Open

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For almost a month now, it has felt as though there is a damper over my “normal” abilities.

Tru here.

I know cognitive fluctuation.

I have lived with it for years.

Abilities disappear. Sometimes dramatically.

Then they come back.

Maybe not completely. Maybe not for long. But there is movement. There are better hours and worse hours, better days and worse days.

That is part of the rotating weather I have learned to live within.

But this doesn’t feel like that.

There are still variations within my days. Some hours are better. Some tasks are easier.

But for nearly a month now, my abilities have not picked back up.

And I am SOOoo tired.

Not simply sleepy-tired.

Tired of trying to accomplish things with what feels like a damper over the abilities I normally depend upon.

What happens when the window doesn’t open?

A few weeks ago I wrote When the Window Closes.

I wrote about recognizing when I had reached the edge of my capacity. I wrote about letting unfinished things wait.

And I reminded myself:

The rest can wait.

Your window will open again.

Except—

it hasn’t.

For almost a month, more and more of my life has been put on the back burner.

Working on my books.

Connecting through words with online friends and care-partners.

eMails.

Tutorials.

Watching my grandson’s sports events.

So many things.

And these aren’t merely tasks waiting to be crossed off a ToDo list.

They are pieces of my life.

I have been putting them on hold because I expected my abilities to pick back up.

That made sense.

When abilities fluctuate, sometimes the best strategy really is to wait.

Don’t force it.

Don’t use precious cognitive energy fighting a brain that isn’t capable of doing something today.

Put it aside.

Come back when the window opens wider.

But how long do I keep waiting?

At what point do I holler UNCLE?

At what point do I stop treating this as something I am waiting out and begin making stronger revisions to how I do things?

Not simply postponing tasks until I am better able to do them.

Redesigning them for the abilities I actually have right now.

That is a much harder decision.

Because postponing says:

I will get back to this.

Redesigning says:

I may need a different way to live this part of my life.

And I don’t know yet which one I need.

And time itself has become part of the problem.

Every little task seems to consume it voraciously right now.

Getting a cup of coffee.

Signing a picture.

Saving it in the right place.

Things I have done hundreds or thousands of times.

I make a mistake.

Then I need to correct the mistake.

While correcting it, I lose track of where I was.

Then I have to figure out how to get back to what I was doing before the mistake happened.

One small task becomes three or four tasks.

This isn’t entirely new.

Mistakes, losing my place, and needing extra time have been part of my brain changes for years.

But suddenly it feels doubled.

And there is a cost beyond the minutes on the clock.

There needs to be time to console myself.

Time to cry sometimes.

Time to cuddle the dog.

Time to recover enough emotional energy to try the next little thing.

Meanwhile, time is being consumed voraciously.

Not by the things I wanted to do with my life—

but increasingly by the effort required simply to do them.

And while I was writing about this, it happened again.

I lost which browser had my blog open.

Finding where I was writing became another task before I could return to writing about how every task keeps becoming more tasks.

Then I couldn’t seem to copy and paste what I had already written.

I know how to copy and paste.

But apparently I wasn’t pushing the correct buttons.

Another tiny task.

Another interruption.

Another place lost.

Another piece of time consumed trying to find my way back.

… THEN i forget how to attach a Link. i dont remember how, and i do not remember how to find out so i give up on it.

This is what I am trying to describe.

And sometimes I want to cry.

There are things on that back burner that matter enormously to me.

My books are among them.

Right now, I don’t see how I can finish them unless my abilities increase again.

That is difficult enough to acknowledge.

But these books don’t contain only my words.

Other people have entrusted some of their words to me. They are looking forward to seeing those words in print.

And sometimes I think about what happens if I cannot get us there.

They will be disappointed.

I will be disappointed.

And that possibility hurts.

I am not saying that I won’t finish the books.

I don’t know that.

But right now I also cannot confidently say that I will.

That uncertainty is part of what I am grieving.

I don’t know whether this damper will lift.

I don’t know whether some of these abilities will come wandering back tomorrow, next week, or next month.

And I don’t know whether this is something different that requires a more permanent redesign.

I simply know that waiting has consequences, too.

While I wait for my abilities to return, pieces of my life are waiting with them.

And while I spend more and more time correcting mistakes and finding my way back to what I was doing, there is less time—and less of me left—for the things I was trying to do in the first place.

Maybe that is where I am today.

Not ready to declare a new normal.

But no longer quite able to organize my life around the assumption that the old normal will be back tomorrow.

Somewhere between waiting and redesign.

That is a much harder decision.

Because postponing says:

I will get back to this.

Redesigning says:

I may need a different way to live this part of my life.

And I don’t know yet which one I need.

I don’t know whether this damper will lift.

I don’t know whether some of these abilities will come wandering back tomorrow, next week, or next month.

And I don’t know whether this is something different that requires a more permanent redesign.

I simply know that waiting has consequences, too.

While I wait for my abilities to return, pieces of my life are waiting with them.

Maybe that is where I am today.

Not ready to declare a new normal.

But no longer quite able to organize my life around the assumption that the old normal will be back tomorrow.

Somewhere between waiting and redesign.

As Abilities Slip thru my Fingers

This one (painted 2022Feb22) is titled “As Abilities Slip Thru my Fingers”.

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/


i was going to add Link to my entry “wHEN THE wINDOW cLOSES” … BUT CANNOT REMEMBER HOW. AND I AM GETTING SO FRUSTRATED WITH FINGERS THAT WILL NOT COOPERATE. BUT I AM DONE NOW.

Attached Picture: TenderlyHeld 2026

Created from a combination of three of my own paintings plus my Mother’s Day bouquet, then reworked into this exploration of movement, entanglement, softness, and light.

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 2026Sep16 … 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. i also write and publish under the shorter name Truthful 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, 2026Sep16. 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, vascular . *** tags: cognitive change, cognitive decline, cognitive fluctuation, dementia, fatigue, loss of abilities, Persons Living with Dementia, redesign, vascular dementia, waiting . *** Add to Pgs/ *** S&S Categ Fatigue, Cognition/Thinking, Coping/Adaptation

PS of Ai short summary: Living with a prolonged loss of cognitive capacity, and facing the difficult question of when waiting needs to become redesign.

Caterwumpus

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Today everything is caterwumpas.

When the world doesn’t quite line up the way it is supposed to.

Tru here.

I know where I am. I know what I am looking at. But somehow those two things don’t quite connect.

I keep catching myself falling—or leaning—and when I try to look directly at something, what I perceive isn’t quite where my eyes are aimed.

It isn’t simply that my vision is blurry.

It’s stranger than that.

My eyes and my perception don’t seem to agree about where things are.

I look at one place and somehow experience another.

Then I look again.

And there it is—where it should have been all along.

Except that for a moment, my brain didn’t put it there.

It is extraordinarily disorienting.

And underneath all of that is the falling.

I keep catching myself leaning or beginning to fall, sometimes before I even realize that I am doing it.

That makes this feel very different from simply having wonky vision.

When I cannot quite trust where my body is, life suddenly feels very fragile.

I know I am here.
I know where I am.
But for a moment, I cannot be entirely sure that my body agrees.

And because I know that my perception is behaving strangely, I keep trying to compensate for it. I look again. I steady myself. I reach for my walker.

And then—

caterwumpas.

Everything is just slightly, profoundly, inexplicably off.

Update the next morning: And now there is the issue of taste.

This morning I still have almost no taste.

I have very little taste sensation normally—there are only a few things I can reliably taste—but those few things are gone right now, too.

So it isn’t simply that the world looks caterwumpas.

For the moment, even some of the little ways I normally experience the world through my senses have gone missing.

And that is a very strange feeling.

A whimsical illustration of a black cat looking curiously at a colorful caterpillar amidst swirling leaves and decorative elements.
Caterwumpas — created from a visual seed of a black cat surrounded by black crochet, then transformed with AI into a whimsical expression of perceptions gone slightly askew. Saved at 776/share/Ready

.

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/

When the Window Closes
Another Bad Day

Attached Picture:

“Caterwumpas” — created from a visual seed combining several of Tru’s original paintings with a black cat in a black crochet environment, then transformed with AI into this whimsical expression of perceptions gone slightly askew.

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. …

Logo design featuring two swans forming a heart shape with the words 'Truthful Loving Kindness' and an anchor in the center, alongside decorative wings.

* Admin Notes — This entry began 2026Sep11, 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. i also write and publish under the shorter name Truthful 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, 2026Sep11 . 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: Jrnl, Sx, Dementia Symptom Tips, Vascular. *** tags: ·  balance, ·  caterwumpus, ·  cerebrovascular disease, ·  cognitive changes, ·  dementia, ·  disorientation, ·  falling, ·  sensory changes, ·  visual illusion, ·  visual perception. *** Add to Pgs/ *** S&S Categ: Confusion/Dis-Orientation, Sight/Vision, Balance/Falling

PS of Ai short summary: A firsthand account of experiencing severe perceptual disorientation, falling and leaning, and temporary loss of taste while living with dementia.

Missing TeaBag

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This morning was a triumph of precision.

Tru here.

This morning I successfully measured my watered-down juice — 1/4 juice, 3/4 water.

Success!

I put the proper amount into my microwave cup.

Success!

I heated it for exactly the right amount of time.

Success!

I added my sweetener.

I was feeling pretty darn competent.

Then I tasted it. 😂

Something was wrong.

I thought about it.

I tasted it again.

And then I realized…

I forgot the tea bag. 😂

Apparently, I can remember the juice ratio, the amount to pour, the microwave time, and the sweetener…

…but sometimes the actual tea part of tea simply doesn’t make it into the process.

And honestly?

It isn’t the first time I’ve done this.

It won’t be the last.

And that’s okay. ❤️

Some mornings, you just have to laugh, add the tea bag, and start again.

*** And yes, that is the same little painting my daughter made for me five years ago, after I managed to destroy two cups by microwaving them too long.

We even wrote a blog entry about it:

[Microwave Cup Runneth Over — March 2021]

Apparently, my relationship with tea continues to evolve.

Back then, the problem was too much microwave.

This time, the microwave timing was perfect.

I just forgot the tea. 😂❤️

.

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/

2021 blog entry at >> https://truthfulkindness.com/2021/03/14/microwave-cup-runneth-over/

Attached Picture:

Yes; the cover photo is an acrylic painting from my daughter Charlene.

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 2026Aug18… 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. i also write and publish under the shorter name Truthful 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, 2026Sep08. 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; *** tags: dementia, everyday dementia, humor, memory, Persons Living with Dementia, tea.

When the Window Closes

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There are days when I can feel my capacity narrowing.

Not always in an obvious way. Sometimes I am still doing things. I am still answering people, reading, writing, participating in conversations, even accomplishing things I had intended to do.

But underneath it all, something is becoming harder.

The past few days have been like that.

Tru here.

My perception has been particularly WONKY. Not simply vision, but that complicated combination of sensory perception and body placement where I sometimes can’t quite keep track of where I am in relation to the screen I’m looking at, or in relation to the walls around me, or the dirt outside. Been using wheelchair quite a bit today, when i feel risk of falling on the Service Dog.

My neck tremors have been worse, too, which makes following words on a screen even more difficult.

Eventually, I reached the end of my patience with myself.

By last night I was muttering and swearing under my breath like a sailor. Or, speaking as the former wife of someone who served in a Ranger Battalion, perhaps … like a Ranger. 😂

It wasn’t particularly graceful.

But it was also information.

I had reached the edge of my capacity.

And sometimes I think one of the hardest parts of living with changing cognitive ability is learning to recognize that edge before we are standing on it.

Today I spent several hours doing something that might not look particularly demanding from the outside: participating in online dementia communities.

I read people’s questions.

I answered some.

I tried to share things I have learned from living with dementia for many years.

I encouraged people.

I reconnected with Elmarie in South Africa during a Dementia Mentors chat after several years of not seeing her. We talked about her art and a portrait she had spent an enormous amount of time creating. The widow appreciated the portrait tremendously — but the rest of the family eventually asked that it be removed from public viewing.

There is a complicated kind of grief in that.

The work was deeply appreciated.

And yet it still had to disappear.

I’m glad I was able to encourage her a little, and we decided to stay connected through email rather than allowing years to pass between conversations again.

That felt good.

And then I learned that Mark Roberts had died.

That took something out of me, too.

I don’t think I always recognize how much energy is contained in loss within the dementia community.

Dementia peer community has an extra Loss-component.

These aren’t simply people I know because we share an interest or belong to the same organization. These are people who understand something about the landscape I live in because they are living in it, too.

We meet each other in places most people never have reason to enter.

We share the strange symptoms.

The adaptations.

The fear.

The humor.

The absurdity.

The things that don’t make sense to people who aren’t living here.

And then, sometimes, someone disappears.

Not because they got busy.

Not because they changed jobs.

Not because they moved to another town.

Because they died.

So every new friendship in dementia community carries something ordinary friendships don’t necessarily carry:

the possibility of loss is already part of the relationship.

And when someone dies, it can stir up more than that one person’s death.

It reminds me of all the people who have been part of this strange journey.

Some I knew well.

Some I knew only through occasional conversations.

Some I haven’t seen in years.

But each one was part of the larger community I have lived within for so long.

So perhaps it shouldn’t surprise me that learning about Mark’s death affected my energy today.

Grief doesn’t always announce itself as I am grieving.

Sometimes it simply looks like:

I can’t do one more thing.

I had hoped to accomplish more socially today.

There are still two days’ worth of comments waiting on my newest painting.

There are Facebook conversations I haven’t answered.

There is LinkedIn, which has been waiting for me for about six weeks because LinkedIn is somehow really, really difficult for my brain, even though I can’t quite put my finger on why.

And there are all sorts of other things I could point to as unfinished.

But perhaps unfinished is the wrong word.

Maybe they are simply waiting.

Tomorrow Guy and I will be on the road for about six hours for my biopsy results, so my usual Monday/Wednesday/Friday rhythm won’t happen.

And that is okay.

The comments on my painting will still be there next week.

The people who left them are not keeping score.

The unanswered messages are not evidence that I don’t care.

Sometimes the brain’s window closes.

Sometimes the body becomes difficult to inhabit.

Sometimes perception becomes unreliable.

Sometimes grief quietly takes a seat beside everything else.

And sometimes the most important thing I can do is stop demanding that I function as though none of those things are happening.

Being gentle with myself isn’t always easy.

Especially when I am the person who knows exactly what I wanted to accomplish and exactly how much I didn’t accomplish.

But perhaps gentleness doesn’t mean feeling peaceful about it.

Perhaps sometimes gentleness is simply saying:

Enough.

The rest can wait.

You are allowed to be tired.

You are allowed to have reached your edge.

You haven’t failed.

Your window will open again.

And maybe that’s why this particular painting feels appropriate tonight.

saved at Ready/interWoven26wSm.jpg with 457kb
interWoven 2026

It has a lot going on.

Layers.

Drips.

Flowers.

Tangles.

Movement.

Fragile things held against darker things.

And somehow, despite all of it, there is still a little space to breathe.

Maybe that’s enough for today. ❤️


Attached Picture:

This is a compilation from three of my paintings plus a photo by my grandson. THANK you Tyler. ❤

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 2026Aug18 … 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. i also write and publish under the shorter name Truthful 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, 20260823. 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, Lewy Symptoms; *** tags: belonging, cognitive change, community, connection, dementia, dementia friendship, energy, fatigue, grief, loss, peer support, Persons Living with Dementia; *** S&S Categ now posted in: Fatigue, Grief/Loss, Social interaction .

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. *** now posted in 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; *** Now posted in 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. *** now posted to 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.

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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,