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.”
