More explorations in narrative medicine

Sunday, May 14th: I awoke this morning, gave thanks for one more day of life and pressed on with the day in good spirits (looking forward to Sacred Harp singing this afternoon) and generally in as good health as I get, but with some annoying shaking of my hands and with a minor-league nominal aphasia (I couldn’t retrieve the name of the city in Massachusetts where I lived in 1962-65 — I kept getting Concord instead of Cambridge — and I couldn’t retrieve the name of the lead singer of the Rolling Stones — I kept getting Keith Richards instead of Mick Jagger.

I was able to view these symptoms with equanimity, believing them to be part of a new auto-immune affliction that I had just experienced over several days of extravagant and terrifying misery. This was presumably its chronic, rather than its ghastly acute, form, something I’d now have to be prepared to live with. This understanding enabled me to understand that these symptoms would be temporary and would soon pass away, so I should just get on with the routines of daily life.

The new affliction. The shaking affected only my left, or nominally good, arm, so for a while I’d have to do serious tasks with my right hand only. Difficult and actually painful, but I can do it. The nominal aphasia I would ordinarily just wait out, but I really wanted those names for a Facebook comment I was writing — now have written. (I have to admit that I live in panic fear of developing a dementia — of which nominal aphasia is an early symptom — so I’m having to use my very extensive knowledge of nominal aphasias to appreciate that what happens to me now is not a harbinger of anything, it just is)

And I realized that I can work around the temporary deficit to discover the names I needed. I didn’t know that city name, but I knew it was in Massachusetts, abutting Boston across the Charles River; that both MIT and Harvard were located there; that Massachusetts Avenue led from MIT to Harvard Square, and that Concord Avenue then led north from Harvard Square, to the street I was living on at the time.

I go into such detail because it explains where Concord comes from — Concord and Cambridge both being trochaic words beginning with /k/, spelled with a C, and both being proper names relevant to my life in Massachusetts at the time. Everyday-life word retrieval errors work like this. They pull up the wrong word (and usually we recognize that and self-correct). In the many types of nominal aphasias, retrieval is simply blocked.

But my minor-league nominal aphasia comes with a shitload of relevant information about the blocked word, which can then be used to look up the elusive target. In seconds I had the name Cambridge, though I did stop for a moment to appreciate the cleverness of Concord (as I riffed on above).

Similarly with Mick Jagger, but in that case nothing phonological was going on, it was all about the referent. No doubt I got Keith Richards because I view Jagger as the front man, an astounding performer of a role, while Richards is in fact the wonderfully talented musician, and I admire his craft, acquired through years of painstaking practice and refinement, even while Jagger can take over my body and soul with his performance.

Again, because I had so much relevant information about the blocked name, I could look it up in seconds.

I am perfectly capable of telling a concerned observer that I suffer from temporary nominal aphasia but will soon have the word I need, not to worry. Or most memorably, tell a doctor that I was temporarily in the grip of a problem in finding words, a difficulty whose name — nominal aphasia — I could not at the moment recall, not to worry. I realized at the time that this situation was actually funny, but the doctor was not amused and immediately tried to find a familiar syndrome to label it with and then to find something in my behavior that would have caused this syndrome, so as to tell me that it was all my fault. I did not take this at all well; I should have fired him on the spot, but he’s the doctor who oversees my weaning from prednisone in stages, so there’s a sense in which I have to stick with him.

Tremors plus cognitive deficit. This particular version is in fact different in significant detail from other syndromes that I’ve experienced or that have been described in the literature (so far as I’ve been able to check) that have one or both of those parts. But I’ve been laboring to describe the experience of undergoing these syndromes in some detail.

[Digression. You should appreciate how difficult it is to try to talk to doctors about this stuff. All doctors are now in short supply, so appointments have to be a month or more in advance. And then for a 15-minute encounter, nowhere near enough time to provide experiential reports, and no doctor has the time to read carefully prepared descriptions, or indeed to deal with anything other than what you say in those 15 minutes. Which will then be interpreted according to the doctor’s training, their actual experience, and their personal preferences for dealing with conditions in familiar ways (habit plays a big role in clinical settings).

In any case, they will never hear the sorts of things I wrote up for you, nor are they prepared to look at phenomena in fresh ways, the way a medical researcher might be. They’re clinicians, not scientists, and it would be unreasonable to expect them to be something they’re not.]

But into the fray. Start with a well-described phenomenon, alcohol withdrawal syndrome, which I have personally experienced. From Wikipedia:

Alcohol withdrawal syndrome (AWS) is a set of symptoms that can occur following a reduction in alcohol use after a period of excessive use. Symptoms typically include anxiety, shakiness, sweating, vomiting, fast heart rate, and a mild fever. More severe symptoms may include seizures, and delirium tremens (DTs) which can be fatal in untreated patients. Symptoms typically begin around six hours following the last drink, are worst at 24 to 72 hours, and improve by seven days.

Alcohol withdrawal may occur in those who are alcohol dependent. This may occur following a planned or unplanned decrease in alcohol intake. The underlying mechanism involves a decreased responsiveness of GABA receptors in the brain

My own story involved a period of excessively heavy drinking, the immediate trigger for which was probably the extraordinary loneliness of living in COVID lockdown, possibly in combination with a genetic disposition towards alcoholism (my mother was an intractable alcoholic for most of her life). In any case in the fall of 2020 I realized I was way out of control and just stopped cold. And very quickly was seized by AWS, with the godawful tremors (“the shakes”) as its most notable feature. Plus the cognitive deficit of massive nominal aphasia coupled with great difficulty in relearning the words. Eventually it became clear that it went beyond mere nominal aphasia to an apraxia, a loss of knowledge of entire suites of behavior, in particular how to use a computer.

The nominal aphasia of AWS — superficially resembling the aphasias of (among other things) traumatic brain injury, stroke, and dementias — is well reported, but the larger-scale apraxia, especially of great specificity as in my case, seems to be unusual. But there it was. And I was slowly brought back to my former abilities by, first, a therapist in the rehab center I went into, and then by my wonderful techie friends, who helped me through, step by tiny step, each step requiring long and tedious practicing on my part, until things started to come back to me in larger clumps and eventually I was whole again.

Reports from that time: from my 12/5/20 posting “The rehab postings”:

A series of postings written up at the Palo Alto Subacute and Rehabilitation Center in Palo Alto CA, where I moved for about two weeks afer some days at Stanford University Hospital, entered in the grip of alcohol poisoning and also alcohol withdrawal syndrome (prominently featuring the tremors of withdrawal, the famous shakes).

It turns out that an assortment of afflictions i had attributed to other causes were actually facets of alcohol poisoning. I have now largely emerged from this fog of disability, severely damaged but in overall shape better than I have been for many years. (I am pushing the positive here, as I strive to recover what I can and work around what I cannot).

[Digression. There was still the question of how I got into this pickle in the first place. This called for therapy. I rejected the therapeutic practices of Alcoholic Anonymous on several grounds (I realize that they have done wonders for a great many people, but no single therapy suits everyone, and the AA route was not for me.) Alcoholism counselors at Stanford and the rehab center had high praise for another set of therapists, I agreed to enter into therapy with them and was told that meetings would soon be scheduled. It eventually came out that their practice was oversubscribed and that I was on a waiting list for treatment that wouldn’t be available for years, if ever. (I’m deliberately leaving the names out of this.)

So this, too, I had to do for myself. I have no idea of what aspects of my psychological makeup were deranged or how they could be changed, and I’m not sure that insight would have actually been useful. But I can learn to do things in a new way, I’m good at finding ways to work around obstacles, and that I could do. I could teach myself how to live in a world of social drinkers while not drinking myself.

I discovered early on that I didn’t crave alcohol, didn’t miss the buzzes I’d been getting from it. So that part was easy. But I missed the social situations and had to train myself to perform in them (I am a very sociable person, so this was important). Eventually, I realized that I missed some of the specific tastes, as sources of great pleasure: excellent wines, intense aperitifs and eaux-de-vie (I am a supertaster, keenly sensitive to scents and tastes and attracted to extreme taste experiences: bitter, sour, umami, and spicy-hot).  I had to train myself to enjoy all this in recollection, as treasured memories, the way I had to learn to enjoy travel, walking long distances, dancing, going to concerts, sex with other people, and much more, all in recollection or through the reports of other people’s experiences, as the actual activities became unavailable to me over the last two decades. I knew how to do that.

I will say that I deeply resented the treatment I got from that therapy practice, with the result that I had to do it all on my own. But in the end I did a good thing.]

The basis for AWS is a change in brain chemistry caused by consuming large amounts of alcohol, and the therapy is designed to repair this damage. A significant part of that therapy uses vitamins and minerals to reset brain chemistry. This was done back in 2020; I continue to take some of these vitamins and minerals as protection. Repeated testing indicates that my body chemistry is now in fine shape, nothing to see here.

The point is that there seems to be no organic basis for the combination of tremors plus cognitive deficit that recently overwhelmed me. It’s something new, sui generis. With no established name. I could just call it Bruto, but I’m favoring apraxis tremens  —  apraxis for the loss of ability to perform purposive actions of certain kinds, tremens for the shaking.

Apparently, I am now going to have to live with an attenuated form of apraxis tremens.  That is fucking annoying, but I can do it, as I have demonstrated in the past few days.

Now to recall that I have been subject to yet another sort of disabling tremors, distinguishable from the delirium tremens of AWS and from my current apraxis tremens. From  my 1/15/23 posting “Explorations in narrative medicine: spontaneous tremors”:

sudden-onset spontaneous (not triggered by movements) wide-swinging strokes of the hands and  shaking of the legs, not at all painful but not even slightly controllable, in bursts from one or two up to a dozen or so repetitions.

During the events, I don’t feel feverish or hot or sweaty, but instead deeply, deeply cold. Not the external cold of cold air, but a cold that can’t be allayed by any amount of coverings or warming devices — a cold that comes from the inside.

… The experience of my tremors in process is very much like alcoholic shakes, or more generally, shaking as a withdrawal symptom from addictive substances. But my tremors appear as bounded events that occur with no visible triggers (though they might be facilitated by predisposing factors like exhaustion), but instead happen the way attacks of relapsing – remitting multiple sclerosis do.

So they look to me like an auto-immune affliction; I have a large collection of these, and seem to be picking up new ones every so often.

There seems to be no established name for them; I suggest spontaneous tremors. Maybe spontaneous cold tremors, to get the feelings of internal cold into the name.

The spontaneous cold tremors are truly godawful. They go on apparently forever, until I am completely worn out with exhaustion from fighting them and fall into sleep. Then the next day every part of my body hums in pain, and I lose that day too.

The good part is that the spontaneous cold tremors appeared as an affliction during the winding down of my prednisone dosage and then passed away. So some sort of short-term auto-immune affliction.

This was the same pattern as another godawful affliction that appeared during the prednisone wind-down: what I’ve called deep narcolepsy. From my 11/23/22 posting “The news from my house”:

Sudden-onset, irresistible, roughly two-hour chunks of deep sleep (accompanied at the end, and sometimes at the beginning, by a liminal period of visual hallucinations). Essentially, I pass out, with a short warning period beforehand.

… A lot of my conscious time today was spent rooting around for information about conditions resembling this one, which I’d started playfully thinking of as monster-sized, or industrial-strength, narcolepsy. (Ordinary narcolepsy I knew a fair amount about. A crucial fact about it is that it’s an auto-immune condition; and oh dear, I live in a dense forest of auto-immune conditions.) Well, it turns out that narcolepsy is amazingly variable, and I seem to have a variant, complete with the hallucinations, which are well-known.

But the variant itself seems not to have been described, and has no standard name. I now propose to call it deep narcolepsy

It can’t be put off. Once the warning feeling of impending doom (what I call the aura, after the preparatory auras of migraine and grand mal seizures) appears, I have just a short time to put myself in a safe position (sitting back in my recliner chair), otherwise I will just pass out and fall to the ground (absolutely to be avoided).  Or, if I’m at my computer, collapse face-down onto the keyboard for about two hours; that happened several times.

The two-hour limit seems to be have been determined by my need to pee all the time (from all the diuretics I’m taking). I awoke to the terrible hallucinations, plus a really desperate need to whizz (but I always have a urinal close to hand).

I had the deep narcolepsy episodes for about two months, then (like the spontaneous cold tremors) they too passed away, never to return. Now I can just take naps if I need them, and I never get any liminal hallucinations, and that is just fucking wonderful.

Of course, now I’m back to ordinary awful, not to a state any normal person would recognize as good health — I’m not “better” or “recovered” or however you would say it — but it’s an awful I know. I’m going to whine about it a lot, because it is objectively awful, but I know how to deal with it.

A little miracle in all of this is that I have not descended into despair and depression. Frankly, I don’t know why; I’m given to depression, ranging from mild downers to (in my dark past) full-blown clinical depression. A very long period after the years of caring for Jacques and then his death and then my near-death from necrotizing fasciitis, many years of functioning fully in some ways but being utterly frozen in incompetence in others (so making life hell for the people around me, but most especially my daughter). Despite all that, I’m generally happy now, able to find joy in many things.

I would take credit for this, except that I’m not doing anything to take credit for; it somehow just happens to me, I don’t know why or how. Well, I had no rational expectation of living to be 82, or anywhere close to it. Ann died at 48, Jacques at 61. My mother died in her 50s, of lung cancer (from her heavy smoking). My father lived to 80, but until the leukemia got him, he’d had a life of vigorous good health, while I have been nearly-dying all of my life, again and again, several times in the last few years. That has just caused me to  accept that I am always about to die, so that every day I wake up is a gift and I need to make the best of it that I can. I don’t know where that optimism comes from (my father’s amiable adaptability was certainly a model, and his unreasoning, totally accepting love for me and pride in everything I did provided a solid ground for me to negotiate a deeply hostile world). But there it is.

It’s now the morning of Monday May 15th. As I type this, both my hands are shaking, enough to make getting myself a cup of tea somewhat perilous. But I know that this will soon pass, and I haven’t had any nominal aphasia, and I’ve been able to finish writing this posting for you. So on balance this is a very good day, a day to take joy in.






3 Responses to “More explorations in narrative medicine”

  1. kenru Says:

    Arnold, over the years I’ve admired your fortitude and ability to describe and codify your ailments. But this treatise of descriptions and nomenclature takes it to another level. As usual, I’m just in awe of your scholarship and honesty. Your blog is indispensable; and I fervently hope you are able to continue to surmount and conquer your health problems for many more years.

  2. arnold zwicky Says:

    Update on May 15th: I waited patiently for several hours, posting (which takes only the one fully usable finger on my right hand, because I’m a one-fingered typist; and the shaking doesn’t impede my hitting keys with that finger), and then the shaking just stopped, suddenly, and I could go get myself breakfast. Which tasted exceptionally wonderful, because I was crazy-starved for food. I gave myself extra blueberries as a reward.

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