Category Archives: Lewy body dementia

cat, faith, Lewy body dementia, pets, small fiber neuropathy, writing, Yeshua

Life in the Medical Wilderness

January 12, 2022 Carol

Almost 2 years have passed since I last posted any personal updates—2 years of confusion, anger—and grace. Most amazingly, I do NOT have Lewy body dementia (or any other kind of dementia, for that matter): that’s the warm, beating heart of my news. I am infinitely grateful that I won’t be walking that road.

I do have a few thoughts about my experiences in the hands of physicians.

Here’s the background, in case you’re just tuning in. Early in 2019, I saw a respected neurologist, and assumed—foolishly—that he would be a man of principles, skilled in the performance of his art. Feeling anxious and off-balance from the sudden changes in my life, I reached out to him in trust. He, however, did little but look to his own divine omniscience (or personal lottery hopper, whatever) for inspiration before burdening me, a patient he’d barely met, with a capricious diagnosis of a rare and deadly disease. Following up on another doctor’s preliminary sleep study, he took perhaps 15 minutes to administer a quick mental status exam and a standard connect-the-dots psych test and then delivered his extempore diagnosis full-blown, like Athena from the brow of Zeus.

I’m still angry, although I’m trying to let it go. After all, a physician who believes himself a god could easily have contracted his delusion by just breathing the air of our culture. As long as we hail our physicians as god-like purveyors of medical miracles, doctors who lack confidence or crave power will cloak themselves in our expectations like the great Oz in his curtains.

But I must accept some responsibility for my willingness to be misled. No one forced me to accept this man‘s diagnosis as a truth engraved on the foundation of the world. I’ve known for most of my adult life that a diagnosis is simply an opinion—as reliable, or as dubious, as the person who offers it. That’s why we call a second diagnosis from a different doctor a “second opinion.” Still, in defense of my foolishness, I was anxious and off balance, and not thinking very objectively.

And this is one of the huge ethical challenges of doctor-patient relationships: physicians encounter people at some of the most critical points in their lives, when they’re at their most vulnerable. We might even define patients as people experiencing diminished capacity brought on by poor health and the resultant anxiety. They come praying that a doctor will work miracles with his/her incomparable wisdom and skill. Patients are predisposed to be gullible: easy prey, in fact . . . except that doctors aren’t supposed to be predators (and most aren’t). Going to a doctor should never be a case of caveat emptor—“let the buyer beware.”

So I’m back where I started. Angry. If I were a litigious person, I’d have sued him; however, I’m not, and I didn’t. I can only say what many others have said before me: in a more humane world, doctors would be required to experience—at least in some virtual sense—the conditions they would treat before being loosed on a world of suffering patients. That might go a long way toward eliminating a physician’s god complex.

Grace . . .

Grace intervened in late 2020, in the person of a wise and caring neurologist I happened upon during a phone conference she had with my husband. He mentioned my diagnosis in passing, and she asked to speak with me. By the time we hung up, I had an appointment to see her the next week. Two weeks after that, following a huge battery of blood and tissue tests, she confirmed her initial diagnosis of small fiber neuropathy (SFN) and started my treatment.

SFN is a complex syndrome with a staggering array of possible symptoms. I find the diagram below helpful in making sense of it:

There is no cure for small fiber neuropathy, but it is treatable, especially if caught early. Its progression can be slowed, and some losses may be recouped, although not completely. In my case, I’d already had two years of acute symptoms without any treatment before receiving an accurate diagnosis. Fortunately, I’ve responded well (if slowly) to therapy, particularly in areas of cognitive loss. I may never write another book, but I’ve recovered much of my vocabulary, my brain fog has lessened, and I’m remembering more of what I read. I can write letters and short essays (with the constant support of a thesaurus), and on a good day I can even edit existing manuscripts.

So, to all of you who have sent me messages of love and encouragement, I thank you! I may not have replied, but I’ve been warmed by your concern. I still don’t anticipate having much presence online, since I find writing of any kind exhausting. This post, for example, took three full days to compose, not counting getting it up online. I try to choose where my energy will be best spent. But I no longer perceive my life as a tragedy in process; I’m just aging, as every living creature does.

I sometimes imagine these last few years as an expression of my physical uniqueness. Just as each of us has different fingerprints, and a distinct mosaic of genetic patterning, so every body slows down and wears out in ways that reflect a person’s particular life experiences and physical being. Our paths home will always take us by surprise, because no two are ever the same.

A note in closing: my 15-year-old grey tabby cat Mari, whose name I borrowed for the Yeshua’s Cats books, is dying of advanced renal disease. (The cat who inspired Yeshua’s Cat was actually named Morgan—an unlikely name for an ancient Levantine cat! So I used the name I’d given to one of the two kittens I’d adopted after Morgan’s death.)

Mari and I are exploring the shadowy vales of aging and illness together. We’ve become unexpectedly close as her health has deteriorated. Sometimes I’m not sure which one of us is the woman and which the cat. My husband says that Mari has been my sea anchor for most of her fifteen years, and that she’ll take pieces of me with her when she goes. I’m sure she will, but she’ll also leave pieces of herself behind. Neither of us will be the same.

Afterthoughts

What follows is an unpublished post from June, 2020, written 1 ½ years after I was erroneously diagnosed with Lewy body dementia, and 3 months before I began treatment for small fiber neuropathy. It was intended to be the 4th in a series of posts on Lewy body dementia, but it was shuffled aside in the excitement of a possibly new diagnosis . . .

Robin Hobb’s Memory Stone and Progressive Dementia

“I feel like a tree being ruthlessly pruned into a stump,” June 30, 2020

I wrote these words earlier today, as I was updating a symptom diary that I’ve been keeping for over a year now, so that I can remember how I’ve changed, and when. It took me a long time to understand and articulate that feeling, partly because I am diminished, and my awareness is narrowing. I feel life less keenly every day. I forget to care—about people and things I love. I drift, and draw in. My horizons shrink. My spirit vision darkens.

In an earlier post I mentioned that I forget every new book I read within a few months (books I read many years ago I still remember clearly). So when I find good books, I can enjoy them over and over again! This past Christmas my son gave me three new books: the Farseer Trilogy, Robin Hobb’s epic fantasy. I didn’t really like the first book when I started it, but since it was my son’s gift, and chosen with care, I didn’t set it aside. I’m not sure when I got hooked: maybe it was when the wolf Nighteyes entered the story. I know I was captivated by then. I bought the trilogies that continued the tale as I approached the end of each of the others. Nine thick books. And tonight I finished all nine for the third time.

Robin Hobb’s Trilogies with Fitz and the Fool

Hobb’s books haven’t been just entertainment. For me, the Farseer series (including The Tawny Man and Fitz and the Fool trilogies) is that rare thing, a story that flickers with hidden meaning, troubling and fascinating me with something just out of reach. I believe that the only way to understand a story like that it is to journey to its heart—and to mine. I’ve always done this by reading a book again and again, until a key eventually emerged to unlock the mystery. I’m not sure if forgetting the details between readings has helped or hindered me with these books, but when I closed the ninth book tonight, I finally understood.

Hobb creates a fantasy world where some humans are gifted with an extraordinary sense she calls Skill. At the end of their lives, a very few choose to journey to a distant quarry and carve a dragon or other beast from the near-sentient stone there called Memory Stone. As they carve the stone, they release all their memories, and eventually their physical bodies, into the carved stone, hoping to bring it to a kind of life and achieve for themselves a limited immortality: their memories never really die.

The most difficult part of the dragon-carving is the carvers’ long and arduous process of yielding up the memories that make them who they are, in hopes that they have accumulated enough depth of memory to bring the stone to life. But once these carvers have given up a memory, they no longer have access to it. As their lives are poured out, they become vague and distant. They lose the love they feel for friends and family, recalling only dimly the fact of its earlier existence. They drift away from life, and from all but the current of Skill that draws them on.

I’m sure you see the parallels by now—not exact, but intriguing. I don’t know if Hobb intended to mythologize progressive dementia (or cognitive loss), but I believe she has, at least for me. What makes her telling so unexpectedly personal is her description of the effort her carvers make to invest their ever-dwindling strength and capacity into the creation of something that encompasses who they are . . . that embodies their lives’ essence.

Her images shine a light on my own days, making sense of what I have been doing in darkness and unknowing. For I also feel a compelling need to complete expressions of myself: a couple of unfinished books, paintings for my grandson’s walls, pen and ink portraits of my family, a Flickr photo site. I don’t do them as memorials, or to have my name remembered. I’ve always preferred to remain invisible, anonymous, like a cat hidden beneath the shadowy eaves of a forest. Instead, I am pouring my life into a spiritual nexus that I sense as myself, and the effort I expend contributes to its solidity.

It’s so hard to put this into words!

British folk in times past sometimes spoke of retiring from the world in their old age to “make their souls.” That phrase feels oddly appropriate here. I am struggling to yield who I am into the will of the One, whose Being flows like a river through all that is. I am clarifying for myself who and what I am while confronting my own dissolution. I may grow vague and distant, unresponsive and hollowed out, as the life I’ve known seeps away. But by willingly releasing what I know as myself into the Creator’s vessel, I rest on the Deep of Being. I make my soul.

faith, Lewy body dementia, weaving, writing, Yeshua

A Confusion of Shadows

May 30, 2020 Carol

(like a cauldron of bats, or a coalition of cheetahs)

3rd in a series of posts about the author’s experience

of Lewy body dementia

As an author, I never wrote from outlines or carefully crafted plots. Each book remained in flux as I wrote, balanced lightly in my mind, open to shifts in a character’s development or new paths to far horizons. Yet I always knew where I was headed and what I wanted to say. Alas, no more. Even writing a journal entry tumbles me into the wayward crosscurrents of a fraying consciousness.

People sometimes speak of women’s organic logic (as opposed to the linear logic of men), using words like spiraling, intuitive, archetypal. But increasingly, as I write even small posts like this one, I find myself moving through dementia’s bizarre post-logical inscape, where all patterns fade.

My efforts remind me of a befuddled spider struggling with an uncooperative web. Battered and ancient, she lurches from side to side, mumbling to herself as she lays one unlikely strand upon another. Much of her webbing falls away, its intended pattern vanishing through the gaps in her thoughts . . . words floating free of their mooring. Strands cross and re-cross at impossible angles, presenting only confusion to the reader. Yet somewhere beneath the chaos, a compassionate hand takes hold of the tangle, plaiting it into a rudimentary whole, and a pattern flickers through the ragged web—a glimpse of meaning as welcome as sunlight in the midst of storm.

I invite you to consider my web with me.

We all know the story of the frog sitting in a pan of gradually warming water until he quietly boils into dinner. This may be an outworn cliché, yet it confronts us with a real peril of our human nature. Changes that creep up slowly can ghost under our radar. Only rarely do we perceive them as threats. When changes come slowly (they don’t even have to be subtle), or when the people perceiving them are unfocused and distracted, a shifting “normal” can erode into runaway catastrophe . . . Have politicians always been so venal? Has hate always been such a conspicuous part of American life? Didn’t New York winters used to be bitter cold? I can’t remember–is this the way home? Did I think to turn off the stove?

Lethargy has that kind of lethal potential for me.

Sometimes I wonder how I might’ve felt if my doctors hadn’t been familiar with LBD’s symptoms when I first had the sleep study. Would I have shrugged and dismissed my strange new life as normal aging? Would ennui have taken root in the mind fog? Putting a name on it does nothing to slow the disease, but at least it shows me what I’m facing. I possess a piece of data, a bit of knowledge, a light focused on the sly and slippery changes.

So what shall I do with myself as I confront this murkier-than-usual descent into the great mystery?

Dylan Thomas’ famous line, “Rage, rage, against the dying of the light,” is one option that everyone mentions sooner or later, as if such rage were a noble thing and a useful option.

But if you look at his whole poem, you’ll see that Thomas is talking about regret—regret for things his father didn’t do, for life unlived, and the rage he should feel. Yet a whisper intrudes on the poet’s advice: “Is this so different from a child’s rage at being carried off to bed too soon?”

So, should I rage? Or refuse regrets? I think I’ll pass on both. I can’t agree with the No regrets meme; too often it leads to complacency. I do have regrets, mostly for times when my spite made the world an uglier place. Those regrets are important to me. Without regret, I would never have confronted my unkindness, never turned away, and in some small way, Creation would be diminished. But wallowing in regret over foolish mistakes or pleasures denied corrodes the soul and makes a bitter tale for darkening days.

No, I prefer to hold in my tattering mind a passage from T.H. White’s The Once and Future King. I can still remember how it rang like a bell when I first read it in high school:

“The best thing for being sad,” replied Merlin, beginning to puff and blow, “is to learn something. That’s the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you.”

So I learn what I can, even now. Not facts, or political scandals, or even devotional thoughts: facts and concepts soon disappear in the mist. Mostly I learn with my hands and vision—spiritual and physical—because memory is strongest there. I still love to take photographs, although I fall asleep trying to process them. Last fall I foraged for woodland bounty to make gift wreaths. During the winter I experimented with sketching family portraits. Over the last few months I’ve been working on a series of paintings for my 2-year-old grandson’s room. The transformation from digital mock-up to painted canvas should begin any day now. Five years ago I never expected to pick up a paintbrush again.

I was an author, and I am no longer. I was once an artist, and now I may be again. I am a mother, a grandmother, a sister, a wife, and a servant of cats. I was a daughter, and sometimes I remember to be an aunt. And, of course, there are things that never change: I detest hot humid weather and love the cold grace of winter trees; I have a feline heart, except for a well-hidden malamute shadow; and I’ve known since I was a preschool child that the Creator holds me in love and all Creation with me, regardless of the disasters we as humankind visit on our world.

“I will never be further from you than your heart.”

~~The Gospel According to Yeshua’s Cat

** All photos not otherwise attributed were taken by CL Francisco

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culture, Lewy body dementia, writing

Watching Lewy body dementia move in

March 9, 2020 Carol

2nd in a series of posts about the author’s experience

of Lewy body dementia

“All I can tell you is that the train is coming. We can feel the vibration in the tracks and hear the rumble in the distance. I can’t tell you when it will arrive, how fast it’s traveling, or even what direction it’s coming from. But it’s coming.”

(My neurologist’s words after confirming a diagnosis of Lewy body dementia)

I always imagined it would be cancer; after all, cancer is the great leveler of our time. Lewy body dementia (LBD) came as a complete surprise, partly because I’d never heard of it—but then not many people have. Few support groups exist; few physicians are familiar with it. People say it lies somewhere between the Alzheimer’s acute dementia and Parkinson’s progressive motor dysfunction, but when my GP took an on-line LBD seminar, he came away with one conclusion offered by experts over and over again: “We don’t know.”

So I decided to try journaling from time to time, reflecting on my own experience of LBD. Maybe someone will find it helpful.

I noticed a slight mental slow-down in the fall of 2018, but my first real clue that something was wrong was when I started falling asleep without warning, almost as if I had narcolepsy. A sleep test showed me to be one of a very small percentage of people who physically act out dreams during REM sleep; normal folk are pretty much immobilized. Apparently REM sleep disorders are red flags for LBD, so neurological tests followed and confirmed its likelihood (84%). A higher degree of certainty would require an autopsy.

Soon I noticed that words didn’t come to me when I tried to write. I got more dependent on the thesaurus. I couldn’t hold complex thoughts in my mind. Reluctantly, I retired from writing. Meanwhile, the sudden drops into sleep intensified. Short-term memory loss erased the books I read. Each book faded quietly into the LBD wallpaper within a few months. The old joke about people with dementia endlessly re-reading their favorite books is no joke.

Everything always seems to become more and more itself over time, and LBD is no exception. My memory loss continues apace. My balance and physical stamina have noticeably worsened, as have a variety of autonomic functions. But perhaps the most difficult thing about this strange disease is the sleepiness. Such an innocuous word, sleepiness. Along with its equally bland opposite: alertness. Boring, everyday words. Sleepy was something I used to associate with bedtime or tedious meetings. Alert was something I could access on demand.

But LBD has introduced me to a whole new order of not-alert. People talk about mental fog, or fug . . . this is a mental swamp, a bog, with hidden drop-offs into unconsciousness. I feel as if I walk through my days in a viscous pool. A port-a-bog! The day’s normal routine can’t penetrate it. I never wake up. It takes all my mental and physical strength just to stay afloat in daily life.

I’m deeply grateful for the drug modafinil: it takes some of the edge off. I’ve also found a few things that can offer temporary relief, at least for me:

Compelling fiction: if the characters are skillfully drawn, the tension tight, the writing clear, and nothing too horrendously tragic happens, I can read and stay awake . . . as long as I don’t get too comfortable. My favorite authors are people like Ursula K. Le Guin, Lois McMaster Bujold, Laurie R. King, Robin Hobb, and Dorothy R. Sayers.
Total absorption in creative tasks has been a lifeline—painting, drawing, and crafting. The trick here is that it has to be intensely absorbing and challenging. If it bores me, I fall asleep.
Long walks in the woods have never failed me yet. No more than a few yards into the trees, my mind clears. Clarity and life wait there, as they always have. But when I return, low-lying clouds move in as soon as my feet hit the pavement. I also take photos when I walk . . . I just have trouble staying awake to edit them when I return home.
Intense emotional encounters with others also penetrate the fog, but I can hardly schedule those, good or bad. They’re a kind of grace . . . and here I include awareness of the presence of Spirit/Deity/All That Is/God/ess, whatever word you choose. But since traditional prayer involves silence, quiet, and closed eyes, I tend to do my praying as I walk in the woods. That way I don’t fall asleep.

LBD is often characterized by hallucinations, usually visual ones. The dissolving boundary between normal reality and the Lewy bodies’ alternate reality is still in its early stages for me. I’ve had few actual hallucinations, but when I drop into episodes of sudden sleep, vivid dreams come immediately. Here I’m making a distinction between episodes of involuntary sleep and intentional, lying down sleep. The waking seems different, although that may just be the suddenness of awakening at my desk (by dropping something, falling over onto the keyboard, etc).

The intensity of these dreams and their extraordinary presence often result in serious disorientation when I wake up, far more intense than any awakening to a strange room. The best image I can offer is of a deep, swift-flowing river of color and emotion that runs alongside the more solid reality we think of as normal. It reminds me a bit of what I’ve read of the Aboriginal experience of the dreamtime. When I wake from it, I feel long moments of near-vertigo. I stagger between the two streams of consciousness until I can regain my balance in the here and now. Even so, my sense of self remains shaky. I’ll often get up from my desk and get something to eat to ground me in my body. Comfort food, literally.

It’s not such a long stretch to imagine myself disappearing into that tumbling chaos of color and never finding my way back. But as Wayne Oates, an old mentor of mine, used to say, “That’s a basket of summer fruit. It’ll come into season in its time. You can think about it then.”

Paul Cezanne, “Still Life with Basket of Fruit.”

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C L Francisco

Category Archives: Lewy body dementia

Life in the Medical Wilderness

A Confusion of Shadows

Watching Lewy body dementia move in

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