Incipient Dementia--A Victim's Perspective

(written in July, 1998)

Introduction
 
I am 58. I am a retired sociology professor. I live alone.

I first got worried in the fall of 1997 when I couldn’t remember my mother’s conversation, and could not brush this off as undisciplined attention. Maybe this was a merely Freudian matter, but I didn’t think so. In February, 1998 I wound up at a neuropsychologist’s, and had the damnedest time trying to tell her about a movie I’d seen and enjoyed the night before. I knew it was in there, but it wouldn’t come out. Later I wrote her a letter about it. In April she gave me her preliminary report and described to me the perseveration indicating right frontal lobe dysfunction. I knew little about neurology and it had never occurred to me that anything could be wrong with my frontal lobes--I considered myself a decisive person rather than an apathetic zombie. However, I started learning, and in May, when I discovered on the Internet frontal lobe dementia and its faint early signs as recalled by caregivers, I felt uh-oh. I called my neurologist, and in June he told me that my MRI showed atrophy in the frontal lobes.

At this time benign alternatives to FTD (frontotemporal dementia) have not been ruled out, but I feel that’s what I have. My philosophy of life is that in order to live fully one has to respect what one feels (barring irreversible decisions). That is what I’m doing. I also believe in reality-testing, and I’m going to get a PET scan.  [The PET scan, taken in Aug., 1998, showed mild global hypometabolism with superimposed mild biparietal and right temporal hypometabolism, ruling out FD and indicating Alzheimer's]

Now, how do I live? I have lost the normal feeling of moving forward in life, which I used to take for granted except when I was depressed, but I continue to desire quality of life. I now, as it were, paint a picture of what I’d like to see happen, and then act to realize the picture--sort of in the spirit of doing a jigsaw puzzle.

Oliver Sacks has a nice description of the way I sort of am now in contrast to the way I remember having been from age 8 to last September. Speaking of the The Last Hippie (in An Anthropologist on Mars) he writes, he lacked the constant dialogue of past and present, of experience and meaning, which constitutes consciousness and inner life for the rest of us. He seemed to have no sense of ‘next’ and to lack that eager and anxious tension of anticipation, of intention, that normally drives us through life. My Inner Computer will no longer open more than one window at a time--Past, Present and Future won’t open simultaneously.

When I finish this essay, even if I evaluate it highly, I will not have the feeling of mastery or achievement that I formerly would have. However, I can hope, in looking back on this essay when it is in the Past, to have the feeling of having achieved something worthwhile. My sense of the future has radically changed, my sense of the present is substantially altered, but my sense of the past has not only remained essentially the same but has somewhat deepened, I think.

I want, as long as possible, to maintain a quality of life which is characterized by a) dignity/integrity/responsibility, b) meaningful human connection, and c) individuality/creativity/a sense of humor. In particular, I want deep communication and closure with those I love, and to make well the decisions leading to a good death.

Inspiring Examples

As far as I know I am the first Pick’s (synonym for FTD) victim to write de profundis. Except for Ralph Waldo Emerson, whose progressive aphasia and leveling of affect suggest this condition. He wrote Terminus:

Like me, Emerson experienced the loss of a taken-for-granted ability to do two things at once and, correlative with this, distressing helplessness. His poem ends humbly but nobly--dementia does not necessarily mean an incapacity for spiritual growth.

I find inspiration from authors suffering from Alzheimer’s or brain-trauma, Diana McGowin, Robert Davis, Claudia Osborn, with symptoms far more severe than mine at this time. Morrie Schwartz wrote Letting Go when he was dying of ALS--I sense mild frontal lobe dysfunction, and identify with his search for composure, his caring about human warmth, and his tendency to write aphoristically (logopenia) and expand from there.

My Background

Atypically, I’ve always had a little of the dysfunction I suffer. I couldn’t solve the problem of which shoe went on which foot until someone wrote R and L in my shoes. I didn’t enjoy playing bridge because the memorizing was onerous. I couldn’t follow basketball games, let alone play it, I was no good at smalltalk. Hopefully, all this now will help me cope. Robert Murphy (The Body Silent) who became paralyzed by a spinal tumor, feels that his long-term sense of being scrawny and not happy with his body helped him cope.

I taught a course on Human Dignity. The first book was Frankl’s Man’s Search for Meaning. Frankl had written a manuscript claiming that even in the most extreme situations man could keep his dignity and find meaning. Then he was thrown into Auschwitz. Could he live his theory? The first film in the course was of a teenager with (high-functioning) Down’s syndrome. Though he was slow, he had caring, character, self-awareness and a sense of humor. Whether challenged inwardly or outwardly, human beings are not the pawns of instincts or environment but have an inner worth. I now see I thought that teaching this stuff meant, magically, that I’d die by being run over by a truck and never have to face a dramatic challenge to my own human dignity. Oh, well....

Coping

Erb’s Losing Lou-Ann describes what might lie ahead. Clinton Erb’s wife lingered incommunicatively for 5 years in a nursing home, becoming mute 3 years before she died and losing facial expressions a year before that. I consider her fate worse than death. On the other hand, I care that the worthwhileness of a life not be judged by its normality or productivity. Religiously eclectic, my strongest affiliation is with liberal Judaism. Rabbi Rami Shapiro would say to someone terminally ill: Show those whom you love how to face their own death by living in the midst of your dying. Live no longer than you should. Die no sooner than you must. Die when you choose, but first consider what else needs to be done. Treat yourself to life, and then when you are ready, treat yourself to death.

I intend to do what I can to connect with people whose values and concerns are similar to mine, say, who may be vulnerable to or victims of Alzheimer’s or Huntington’s. I can learn from them, and I can care to help them--whether by providing an example or a warning.

I’ve taken pains to think through my basic attitude toward these dark issues partly so I can more easily put them aside and better enjoy my remaining life.

For a couple of weeks after the MRI I was struggling against clinical depression. Fortunately, the advice helpful to cancer victims and prisoners-of-war worked for me. Control what you can control, communicate--express your feelings, look death in the face, find meaningful life-tasks and do them, search out and challenge dysfunctional negative thoughts.

My vulnerability to feeling helpless remains a challenge. If the computer on which I’m writing malfunctions I’ll feel painfully paralyzed because I can’t attack or focus on a problem in the old way. I will sooner call a repair- person and be less critical of his work and its price. While maintaining a basic level of self-control, I need to accept that I have changed.

I fear getting ALS. If my foot slips off my bicycle-pedal I have a twinge of fear. Yet that would take care of the nursing-home problem. So why do I fear it so much? Part of me hopes that I have a mild case of FTD and that I’ll spend years like I am now before there is further decline.

Even though my remaining time is precious, in order to live fully rather than depressively I have to be able to waste some of it, or have an attitude of leisure. I’m experimenting with my former hobby of ham radio. Conversing slowly in Morse Code can perhaps get around the sluggishness of my frontal lobes.

The Rituals

Why do I take the same long bike-ride to the same destination and back almost every day. Why not vary it like I used to do? It’s not because I’m anxious and compulsive a la did I turn off the stove? It’s not that I’ve a special pleasure in consistency. So I made myself vary it--to observe my feeling. There was an uncomfortable absence of the familiar inner discussion (about losing weight, other possible physical activities, other uses of my time, etc.). It was as if I’d looked out the window and seen ominous clouds (suggestive of the aftermath of a nuclear war) rather than the familiar landscape. To ritualize my activities is to avoid looking out that window and to avoid the awareness of change.

Dietary Changes

I noticed that I’d stopped buying oranges. So I bought two, to note my feelings. To peel and eat the orange, what with its segments, unpleasantly absorbed my attention. I peeled and ate the other orange distractedly, when some issue from a phone conversation was reverberating in my mind. It was fine.

Interpersonal Relations

Patients suffering from Pick’s disease and other frontal lobe syndromes [FLS] often provide some of the greatest caregiving challenges encountered.... These patients often have little insight into their limitations, make poor choices, and can be disruptive, posing risks to themselves and others.... Many are disinhibited and act on impulse seemingly without reason.... The patient with FLS may refuse to stop driving, make unusually large purchases, use power tools inappropriately, have social outbursts, or eat non-food items such as glass ornaments. Their lack of insight and disinhibition may produce inconsistent behavior despite making verbally appropriate statements, constantly catching caregivers off guard (Richard J. Caselli). They can be apathetic too.

I’ve always felt something of a misfit and outsider, but compared to this picture I feel pretty normal. Of course that statement (and this whole essay) may be (at best) a verbally appropriate statement. Be that as it may, I want to maintain insight and resist Caselli’s picture as long as I can.

I was interrupted while writing this by a door-to-door salesman who had the effrontery to block my door with his foot, as I was politely telling him no. I instantly had a social outburst, screaming at him. It was effective and, I believe, appropriate. But I find myself carefully reviewing any behavior of mine that might represent the nastier aspect of Pick’s.

I also meditate on an essential core of human connection I can cleave to. Here buddhist spirituality helps me. One can cultivate non-attachment to craving and impulse. Lou-Ann was for a long time able to resist her craving for snacks and desserts. Similarly, one ought to be able to resist impulses that are annoying to those around one. Then buddhism identifies three basic interpersonal emotions that even young children enjoy but have great spiritual value. One is compassion. This is the core of human feeling. Elie Wiesel wrote, You suffer, therefore I am. It is gratifying to read about the response to distress of the eighteen to twenty-four month old child: patting the head, fetching a toy, offering verbal expressions of sympathy, finding an adult to help, and so forth. When I deteriorate to this level, I too can keep my compassion, and hence my humanity.

Another basic emotion, closely allied to compassion, is lovingkindness, expressed in helping. It is gratifying to read that, eight years after diagnosis, a former family therapist reaches out to encourage others at his adult day care center to talk and participate, just like he did in the days when he was running things.

The third basic emotion is sympathetic joy. And even the infant is capable of this. Yet it is so often lost to envy and competition in the normal adult.

As a social psychologist, I can’t help wondering if some of the self-centeredness of people with FD is due to their being given the role of pitiable victim or, alternatively, due to their losses being denied. Without denying their tragedy, suppose they were seen as people having a special opportunity to become the little child who enters the Kingdom of Heaven. There is a tradition in both Judaism and Christianity of the holy fool, the simple, uneducated, unsophisticated person who serves God spontaneously and enthusiastically, without stopping to think about what he is doing. His serving is especially beloved because no intellectual barriers come between him and his God (Rabbi Harold S. Kushner). With this thought I can hopefully face the prospect of disinhibition with the serenity of the 23rd psalm.

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2/7/99--Update

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I wrote “Incipient Dementia” in late July, 1998, about a month after my first personal

experience of the likelihood of catastrophic illness (triggered by the abnormal MRI). It

was then titled: “Frontotemporal Dementia--A Victim’s Perspective.” I had just seen the

head of the the Frontotemporal Dementia (FTD) clinic at UCLA, who had told me that FTD

was “not unlikely.” She had mentioned Alzheimer’s Disease (AD), but as an improbable

alternative--later she admitted surprise at the PET results. She had mentioned some

benign alternatives, but without enthusiasm. Essentially, her examination seemed to

confirm the impression I’d gotten from my reading and from the neurologist I had seen in

June. Of course, my lucid “insight” spoke against an FTD diagnosis, but hardly

conclusively.

-

In order to conquer depression and to assert my human dignity, I chose for myself the

role of being perhaps the first FTD victim ever to maintain awareness and tell the story.

One of the most impressive experiences of my life had been to talk with Tom Blatt,

who had escaped from Sobibor death camp. I would try, in my way, to emulate

him.

-

Not only his courage but his humility impressed me. He explained that he was not

basically a hero, and if he had “merely” been in Auschwitz he would have perished. It

was only the certainty of death that brought out the extreme of daring in himself and his

comrades.

-

My UCLA neurologist was happy to tell me that PET showed AD, because it was

“treatable,” but the news depressed me again. I thought “Auschwitz”--that I’d now be

one of a gray horde of prisoners who would slowly, painfully and ignominiously perish.

So far, thank God, it hasn’t turned out that way, even though there is no substantial

reason to doubt the diagnosis (UCLA reinterpreted the MRI). I have not observed any

further cognitive decline since I wrote “Incipient Dementia,” but that’s due, I think, to

my starting on Aricept, which can retard AD by 6 months.

-

In hindsight, I think the experience I reported in “Incipient Dementia” resulted from a

mixture of congenital nonverbal learning disorder with a touch of Asperger’s syndrome,

AD, anxiety, and taking the role of the FD victim. I’m less conscious of what I eat and

how I eat it, now that I’m not worried that this reflects the first signs of the dreaded

Kluver-Bucy syndrome. I’m less anxious about my quietness in social situations as a

measure of the atrophy of my frontal lobes, and this of course makes it easier to converse.

-

I have become more confident I can usually pass for normal. An interlocutor would take

me as some combination of shy, wanting to be a good listener, deep (unconcerned with

mundane detail), self-centered, and absent-minded, and would rarely guess that I have an

organic memory impairment.

-

I have joined the tiny community of early AD victims who communicate by chatting on

the Internet. It is a great medium for us because it is relatively slow, and provides an

instantaneous written record of the conversation. We swap jokes. For instance: “As a

senior citizen was driving down the freeway, his car phone rang. Answering, he heard

his wife’s voice urgently warning him, “Herman, I just heard on the news that there’s a

car going the wrong way on 280. Please be careful!” “Hell,” said Herman, “It’s not just

one car. It’s hundreds of them!”

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In conclusion, “life goes on,” even though it is not the same.

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