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David Kolb, PD essay(s) 1
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A Shaky Walk Downhill: Living in Parkinson’s World
David Kolb
Steps in this exploration
1. Writing toward Parkinson’s 1
After the Diagnosis 3
Research and Hopes 5
2. Parkinson’s World 8
Parkinson’s World from the Outside: Motion 8 S
More than Motion 10
Parkinson’s World from the Inside: Space 11 s
Tightening Space 11
Fighting Back: Forced Exercise 14
Parkinson’s World from the Inside: Time and Balance 15
Chronic Decline 16
Jerky Time: Ons and Offs 18 s
3. Excellent Life: Expanding the Present Moment 19
The Philosopher at Bay 19
Forced Exercise: The Present Moment 20
Conflicting Advice 20
Forced Exercise: The Philosopher Reaches for Context 21
Forced Exercise: Time and Times 27
Forced Exercise: Beyond Self-Care 28
4. Walking Down the Mountain: Decline and Dementia 33
How is it Going? 33
Moving into Dementia 35 sliding
Self-identity in Decline 38
A Conclusion 42
Appendix 1: Research Into Causes And Cures 43
Appendix 2: The Stages of Parkinson's Disease 45
Note: This essay is available in PDF and e-book formats at
http://dkolb.org/pd.essay/pd.essay.download.page.html
1. Writing toward Parkinson’s
In the fall of 2005, I was working on my fifth book when I noticed that my
typing was not what it used to be. Now in 2015, on the desk in front of me there
are two keyboards, but I am barely using either one of them.
In the ‘50s my family used a black portable Underwood typewriter with round
black keys and type bars that came up to hit the paper, if they didn’t tangle with
one another. In college, a school secretarial job provided me with my second
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typewriter, a heavy gray Royal office machine that made our home machine seem
puny. Through the job I became a skilled and rapid typist. This influenced how I
began to write and compose. My ubiquitous yellow pads began to recede, used for
outlines or jottings but not for prose composition.
Later my parents gave me a portable typewriter of my own, and from this point
on I composed everything directly on the typewriter. I could type much faster than I
could write, then go back, edit and retype. I was ready for word processing, though
it didn’t exist.
In the mid ’60s I taught philosophy for three years. I composed class material
and handouts, exams and reports. My little portable typewriter had morphed into a
electric Olivetti Lexikon, a wonder to work with. Modeled on the IBM Selectric, its
little ball spun and hit the paper; it never jammed and I could type even faster.
My thinking and writing worked together, bringing ideas to paper with grace
and ease of a dance. I could type a two-page single spaced commentary on a
student’s paper as quickly as I could have handwritten far fewer comments.
Then, when I was teaching at Bates College a new horizon opened up:
computers. In 1984 I purchased a machine from Epson. Then the Bates College
computing committee selected IBM style personal computers for all faculty, so a
new PC replaced my quickly obsolete Epson. In 1992 I started exploring non-linear
writing (hypertext), and the best authoring program ran only on Macintosh, so I
purchased a Mac and have used them ever since.
Each change in technology improved my writing and composing. But by 2005 I
was having trouble typing accurately. I could still type rapidly but the mistakes
were increasing. I experienced an occasional tremor in my left arm. My wife Anne
worried about the tremor. During that fall and winter I went through inconclusive
neurological tests, including a spinal tap to test for MS. Then, an MRI revealed a
scattering of white spots in the middle of my brain, MRI slices of spheres of dead
cells around small blood leaks. There were no incidents I knew of connected with
the leaks, but we worried that they were mini strokes. A second MRI suggested that
the white spots were increasing in number. We were frightened of imminent
catastrophe; several close relatives had suffered severe strokes. Was it all over?
Further brain scans suggested that the spots were not increasing, though that
uncertainty still remains.
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After all the tests, we still did not know the cause of the tremor and typing
difficulties. In October 2006 we retired and we trekked across country from
Auburn, Maine, to Eugene, Oregon. There the tests continued under a new
neurologist. Yet another brain scan, movement and pattern tests, checking my
reactions to a medication that helps Parkinson’s but little else. Finally in January
2007 my neurologist announced “you have Parkinson’s disease, and in about 10
years you are going to need a great deal of help.”
My long dance with keyboards had ended. No longer can I move my fingers
freely and speedily. I can, some days, type awkwardly with endless mistakes and
extra letters inserted by twitching fingers. Other days I can’t type at all; my hands
won’t do what I want. Having been a good touch typist makes things worse, since
I’m trained to leave my fingers on the home keys — a fatal mistake with Parkinson’s
edgy fingers. Better to stand off and dictate, jiggling with the tremors, trying to
enunciate clearly enough that the machine will understand what I am saying,
concentrating on the content — until I face the problems of editing and re-editing.
It is possible though awkward to edit with voice commands, but they take focus off
the content, so I usually edit by hand, and the missed keys, repeated letters,
accidental deletions return again.
My ideas, once borne easily on a smooth flow of thought to fingers to screen
and paper now have to wind through twisty channels and swirl around obstructing
rocks in order to arrive where they can spread out peacefully.
Skill and speed ran up against Parkinson’s disease. I can write, but the symptoms
remain stubbornly present. But I am stubbornly present too and I don’t plan to stop
writing and creating.
All of us realize, whether from friends and family members, or from those and
ads for smiling happy retirement villages with nursing homes lurking unseen behind
them, that we face lingering decline. We all are marching downhill. Parkinson’s
throws that more abruptly in my face every day. Perhaps I can express something
from my life with Parkinson’s that may help all who live on the downward slope.
That, not just me, is what this essay is really about.
After the Diagnosis
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Here we were embarking on retirement, in a new city, with only a few
acquaintances, a continent away from our Maine friends and habits. Suddenly we
were told that we must expect steady degeneration and increasing limits on what I
would be able to do. We had suspected this diagnosis was coming, so it wasn’t a
complete shock, but it had the finality of a judge’s sentence.
I feared what Parkinson’s would do to my lifespan and my professional work.
There is a “young onset” variety of Parkinson’s that advances more rapidly and can
devastate someone in mid-career. Michael J. Fox has spoken eloquently about his
experiences acting and working while facing Parkinson’s. But I had just retired from
teaching at 67, and was envisioning years of travel, relaxation, and continuing
professional activity. Suddenly I didn’t know what to expect. One Parkinson’s
patient may decline gradually for twenty years, while another goes from leading
hikes in January to being unable to walk without assistance in November. Anne and
I had little to go on except my neurologist’s ten-year estimate. What would this
mean to our hopes? How would this affect my plans to attend professional meetings
and continue to write? We didn’t know and no one could tell us. We made plans to
travel more and I accelerated my unfinished writing projects.
We researched on the web and in print and talked with other sufferers. We
observed that my symptoms were not increasing too quickly, so we began to feel
less uncertain. It seemed as if we could go on for some years much as we had
planned. This turned out to be true, but my symptoms have slowly and inevitably
increased, interfering more and more.
We were getting to know people with the disease, but it took time to find the
nerve to go to a support group. I was afraid I would be crushed by the thought
“that’s me in the future.” Indeed, walking into the room, that did happen, but along
with it came a sense of relaxed sharing and mutual support. No need to hide
symptoms or be embarrassed. Talking frankly about problems and fears. Anne and I
now rely upon that community and give mutual support as we can. Over time,
some of our friends have gotten seriously worse, causing greater stress on their care
partners. When symptoms become more serious and the medication regime
becomes more difficult, changes may have to be made in a house, or people may
have to relocate, and both stress and expense increase.
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When a person suffering from Parkinson’s meets another for the first time the
most frequent question is “when were you diagnosed?” The answer tells how much
time the other person has had to face up to the disease and its implications. It also
lets each person compare their own progress in the disease with the other’s;
progress varies enormously from person to person — though “progress” seems the
wrong word to describe the trajectory of a degenerative disease.
The next question we often ask is “what meds are you taking?” There is as yet no
medication that attacks the unknown cause of Parkinson’s disease. So medications
are prescribed to alleviate the symptoms, not to slow or stop the disease. When it
was discovered that Parkinson’s cuts the brain’s production of dopamine, a
neurotransmitter crucial to motion and mood, attempts were made to supply
dopamine directly. Unfortunately, when given orally dopamine causes nausea and
cannot cross into the brain. The first effective medication arrived in the 50s and 60s:
L-dopa, a precursor chemical that gets to the brain and is used by working cells
there to produce dopamine. This revolutionized the treatment of Parkinson’s. But it
depends on there still being working cells, and they get fewer over time. Also, it is
difficult to maintain a steady flow of L-dopa, and side effects require companion
medications. That is why we ask one another about medications, to locate each
other on the slope of decline, and to find out if the other person might have found
personal tricks that help relieve the symptoms.
Researchers continue to seek better ways of delivering a steady supply of L-dopa
to the brain. But they also seek ways of interfering directly with the mechanism,
whatever it is, that destroys dopamine producing cells.1
Testing and Hoping
Shortly after my diagnosis I enrolled in a clinical test designed to see if large
doses of the amino acid creatine could improve the metabolism of mitochondria in
brain neurons and slow down the progress of Parkinson’s. The study was to take
seven years. I was assigned packets containing five grams of white powder that I
was to mix with liquid and drink twice a day. I kept to this regimen for five years; I
could not feel any positive or negative effects. But the regimen did produce scary
fantasies about trying to explain to Mexican police or Turkish border guards why I
was carrying dozens of sealed packets containing an unidentified white powder.
1 See the appendix on recent research.
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That study brought me to Oregon Health Sciences University in Portland for
physical and cognitive tests following a set protocol. I enjoyed talking with the
doctors conducting the study and it gave me a second perspective on my disease.
In the study, the doctors evaluated whether or not the drug worked by repeating
standard tests and administering a lengthy questionnaire about symptoms.
Everything depended upon my memory of recent events and the skill of the doctor
in looking and listening. This method does not lead to fine discrimination of small
effects. We need a blood test or a scan or something objective that could
conclusively identify Parkinson’s and measure small changes in the disease. Such
“biomarkers” would make it easier to evaluate proposed therapies. At the moment
no such biomarkers exist but very active research is seeking them.
Ultimately the researchers concluded that while the drug was not harmful, but
neither was it beneficial. So the study was closed down several years early, and it
turned out that I had been taking the placebo.
It was a good feeling to be involved in the test, and I learned what was
percolating at a major Parkinson’s research center. I would like to find another such
study – it’s often difficult for Parkinson’s researchers to find volunteers for studies.
The Michael J. Fox Foundation provides a web tool that can find studies in a local
region fitting any stage of the disease.
Unfortunately, so far all the attempts like that study to improve brain function
by strengthening mitochondria have turned out not to work very well. For a while I
had been taking expensive heavy doses of coenzyme Q-10, since some small tests
had suggested that it could help. But a larger test showed that the coenzyme did
not have the desired effect. Another hope gone.
We keep wishing for a magic molecule that when fed into the brain would make
the degeneration stop, or even self-repair. Likely the disease is too plural to be
caught by any single molecule. Hope goes on. Stem cells come and go as a
possibility; surgery has some good effects but not for every case; new interventions
are dreamed up but none of them have proved out yet, and the proving is a slow
process.
Diagnosing Parkinson’s is a matter of the clinician noticing symptoms and
matching them up with the standard list. In other words, it depends on interpreting
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signs. Because the diagnosis is an interpretation, as a patient I can say to myself that
maybe it’s mistaken, maybe it’s some other disease, maybe it won’t really get worse
and worse. At each stage I have dwindling hope that this will be the last
degeneration. At each stage that hope is dashed.
I am aware of what’s likely to happen to me, pleased that it’s not coming too
quickly, trying to help others, and happy that I still can write and travel. Anne and I
keep learning, but now when we go to a Parkinson’s conference most of the
information seems familiar. Given the slowness of research, and the fact that most
new ideas do not work out, I have become resigned, knowing that, barring amazing
medical advances, big changes will come too late to help me in any significant
way.
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2. Space and Time and Motion in Parkinson’s World
Parkinson’s Disease from the Outside: Motion
Dr. James Parkinson called the disease he identified in 1817 “the shaking palsy.”
Now it is called Parkinson’s Disease (PD). Parkinson’s is most noticeable in its
effects on bodily movement. The most visible symptoms are tremors, slowness of
movement, and problems with balance and walking.
Tremor is usually the first symptom that a patient recognizes. There are also
changes in gait, slowed motions, and stiff muscles. “Normal” motion becomes
difficult, slow or jerky. Tremor feels like my body has decided to go on its own. My
hand or foot or lips move in a rhythm I do not decide and can’t quite stop. It gets in
the way of what I am trying to do. Typing, handwriting, holding a spoon or fork
become difficult. As a “resting tremor,” it also comes on when I am not doing
anything. Once at a concert, when I listened to the music my leg would shake so
badly that it disturbed the person in the next seat. It shook in a rhythm that had
nothing to do with the music. I could try consciously to relax the leg and the tremor
would lessen, but if I concentrated on the music the tremor would return. The
remedy was more medication. But recently that shaking has begun again at
concerts and lectures.
When we think of motion we first think of walking and running, but we also
move when rising from a seat, reaching for a cup, turning to look behind, and all
the hand and head motions that add texture to our spatial life. These too become
more difficult to do with smooth grace.
Walking, the advanced Parkinson’s gait is a hunched over slow shuffle, barely
lifting the feet. But even early in the disease, my walk slowed down without my
noticing. I think I am clipping along but then I realize I am taking smaller slower
steps. Briskness is an effort, though one worth making. Trying to walk with an
upright posture rather than leaning forward requires constant vigilance.
Neurologists become expert in reading patients’ condition from observing them
walk down a hall. Now, navigating a large room smoothly is something I have to
concentrate on, rather than something I do automatically.
At other times your body won’t move. Suddenly you cannot take a step. You
might be walking across the room but at the door you freeze. A ticket line is
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moving at intervals but when it’s time to step forward you can’t take the step. You
seem to have forgotten how to walk. So you employ some tactic: you hum a march,
or step backwards then forwards, find a visual pattern on the floor, or some other
personal trick.!I myself don’t experience freezing (yet) but people I know do. It
happens unexpectedly and it can be dangerous in crowds or when crossing a busy
street.
Sometimes the disease makes me want to get up and move around; it’s hard to
sit still. At Parkinson’s information conferences and support groups, the need for
people to move around is acknowledged and encouraged. But then sometimes it’s
so hard to move that I can only sit clenched.
The most disconcerting effect of Parkinson’s, to an outside observer, are
involuntary movements (called dyskinesias). Tremor is bad enough, but the writhing
movements serious dyskinesia brings can be shocking. If one takes too much L-
dopa, the medication causes uncontrollable random motions of t head and arms, or
even flailing limbs and a twisting torso that make it impossible to stand or walk. At
a conference I once saw a man who seemed to be writhing on the floor in painful
agony, but in fact was experiencing dyskinesias, without pain because dyskinesia is
not a response to pain but an involuntary movement caused by excess dopamine.
We talked, and he told me that if he didn’t take the medication he would be unable
to move, having to crawl around the floor of the conference. He was on a tightrope,
too much or too little medication causing huge problems. Later that day I saw him
sitting quietly in a chair taking notes; he had gotten the balance correct. But there is
no one right dosage; it can change hour by hour.
A friend in my local Parkinson’s community writes:
On the whole, I feel rather fortunate. I have not met many people with PD
who are up and about 15-20 years after diagnosis. I do not mean to
suggest that it has been easy. It hasn't.
I went through a spell between 5 and 10 years ago where I was
inadvertently overdosing the carbidopa/levodopa to lessen the tremor and
the rigidity. l would have these awful dyskinetic periods that would last
most of the afternoon. I would often flail and thrash about during much of
the time. I would also experience disruptive dyskinesias during those
(rare) times we had dinner with other folks. It was very difficult
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coordinating the time and amount of doses with the time and amount of
food consumed.
I recall reading in one of my PD reference books that most people with
PD prefer the dyskinesias to the slowness and rigidity associated with
insufficient carbidopa/levodopa. I was in that category until I had a very
disturbing hallucination episode…. [Three neurologists] agreed that
overdosing of carbidopa/levodopa was the likely culprit. I spent a lot of
time experimenting with different doses and time intervals, all with a view
toward minimizing the carbidopa/levodopa. My usage has [now]
remained fairly constant for at least 5 years.
For a patient, dyskinesias create tremendous social awkwardness. You know that the
people around you are puzzled, perhaps repelled, uncertain if you are able to
respond to them. Michael J Fox has done a great service by appearing in public
venues and on TV with varying degrees of dyskinesia. He helps people to realize
that the patient is still there, alert and trying to interact despite the disturbing
movements.
More than Motion
As well as conscious motion, Parkinson’s also interferes with activities that
normally are on autopilot. Balance, facial expression, loudness of voice require
mindful attention. Constipation becomes an issue. Breathing, sleeping, regulating
body temperature and blood pressure, become irregular. The most threatening is
difficulty swallowing, which can lead to lack of nourishment. These and other
functions are affected because the autonomic nervous system is becomes
unreliable. Not everyone with the disease experiences all of these symptoms, but
most suffer from some of them.
So as the disease progresses more and more things which were automatic have
to be done consciously. Facial expressions, tone of voice, movements, keeping
balance. But also planning ahead and concentrating. Social interaction, with voice
and face and gesture. But self-consciousness can make it difficult to do all this at
once. For example, when I’m concentrating on balance my face may become fixed
and masked. Or when I’m concentrating on facial expression my voice may sinks
or I may trip over my feet.
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Because Parkinson’s decreases facial expressiveness, an audience of Parkinson’s
sufferers can be daunting to an unprepared speaker, because one can’t easily tell
how the audience is reacting to the talk. The typical Parkinson’s “masked” face is
dour and looks as if the person were annoyed. I suspect that before I knew that I
had the disease, when I would see students in my office, they would find me
unresponsive and annoyed with their presence, which wasn’t true, but at that point
I had not learned that I needed to enliven my facial expressions.
Despite effort I know I fail at times. A member of a civic committee I joined
remarked that while she found me generally affable and receptive, she had been
“surprised a few times by what appeared to be an almost cold, dismissive, or
otherwise not so pleasant response that did not add up. I just assumed I had been
on the west coast for too long and that you were ‘one of those stoic people’ I knew
in the Netherlands and on the east coast.” She was relieved to learn of the masked
face problem with Parkinson’s. She added that a tremor is easy to interpret but the
masked face is not. She compared this to the difference between people’s reactions
to blindness versus their reactions to hearing loss, which latter is often
misinterpreted as disinterest or lack of attention.
So I often tend to feel out of place, exceptional, imagining that everyone is
looking at me. One of the benefits of a support group is being with people who
have similar afflictions, where I don’t stand out as unusual.
Parkinson’s World from the Inside: Space
What I’ve been describing are symptoms an outsider can observe. What does it
feel like from the inside, from the patient’s point of view? In what follows I will be
describing from the inside how Parkinson’s changes the experienced space and
time of my world. As my motion degrades, space changes as I perceive and move
through it? The disease shrinks possibilities and refigures my world’s meaning while
it twists and alters the feel of time.
Tightening Space
Trying to find a way to describe Parkinson’s space and time, I reach for my
teenage fascination with linguistics and my later philosophy readings. They all
emphasized how words and things take on meaning from our context of actions
and from their contrasts with other possible words and actions. Seeing at the front
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of a house as a house means that I expect that if I walk around it I will see other
sides and a back, not a propped up stage set. My talking and (sometimes) moving
my fingers just now is meaningful because it takes place amid a chain of actions
and institutions and practices that allow for “essay writing.” My present perceptions
and actions fit into a network of other possible perceptions and actions.
My spatial world too reveals itself in terms of projected activities and
movements, and as those movements become more difficult, the texture of space
changes. I’m walking through a park and see a slope on the side of the path.
Awareness of my body lays a gradient of difficulty over the neutral slope. The raw
visual input may not have changed, but I don’t see raw visual input, I relate to
defined objects with meaning and feels. I see a slope that is too steep to climb.
Things appear more difficult, not to be tried, less reachable than before. This is not
a change in the visual perception of the nearby hill, but of its meaning in a
projected future, and its relation to a felt bodily sense of inadequacy. Lived space
acquires steeper contours and new distances, and its horizon of possibilities alters.
The metaphor of “horizon” may be unfamiliar. Think of it this way: when I
perceive an ordinary object, say a doorknob or a bathtub faucet, I know what the
object is. Most of that knowledge is knowing how to use the object. I know how it
fits the texture of daily life; I know what it can and can’t be used for; I know what
possibilities it opens. Those possibilities for future action stand, as it were, behind
the object, just as a visual horizon stands behind the building I focus on. That
horizon of possible activities gives meaning to the object and connects it to a still
larger world of actions and meanings. I know what baths are and when to take
them. I have a cultural expectation of standards of cleanliness, which ties into still
larger social horizons of proper behavior, contrasts of class, and so on. My
perceived world takes its meaning from these possibilities that surround it.
Grounding these wide horizons is my awareness of my own body; this locates
me in space. It anchors my world. But my body too gets its meaning from its
possibilities, from its horizons of action. As I grew up, the texture of my world
widened, more became possible as my body grew more capable.
Here's a memory that might provide a clue to Parkinson’s space: One summer in
the ‘70s I was at the top of Independence Pass near Vail in Colorado, above 12,000
feet. A 300 foot rise nearby could offer a wider view than the parking area; the
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slope was not steep. But as I walked my perception changed. Every ten steps I had
to pause for breath. I don’t remember how far I climbed, but I surely remember
how my world changed as I struggled. A new metric of distance and hardness
structured my space.
Something similar happens with Parkinson's although it doesn't necessarily
mean being exhausted or unable to walk. There are many different kinds of
difficulty that can be laid over your world, mixing and matching in twisted ways.
Fatigue or illness can change my feeling about stairways and distances even in a
single house. My space of possibilities changes and becomes more limited; actions
now occur to me with negative values: things not to do, things with doable only
with an effort I’d rather not make.
These examples highlight walking or moving. But there are other gradients.
Smells or tastes, or their lack, change possibilities. The texture of my world
becomes duller. Opportunities disappear. Problems with balance affect the
centering of my world and can lead to a real constriction, or to disunity. Shaky
hands change my perception of what's possible. Currently I am in an intermediate
zone, there are tasks such as carrying a glass of red wine across a white carpet
which I no longer dare to do, but the possibility still appears in my world and I
have to avoid it.
A growing infant’s world gradually becomes filled with things to grab and
manipulate. It's not that there is a set of neutral perception which then receive a
valuation. Something similar happens in reverse when a world begins to degrade.
It's not just that some tools no longer fit their tasks but that the world no longer
offers those tasks.!Later on this shrinkage of the world and loss of detail may be
seen by others as depression and apathy.
Parkinson’s changes my awareness of my bodily possibilities and so alters that
horizon of possible actions that locates and gives practical meaning to objects
around me. My world becomes constricted. The slope is too steep, the room too
wide, the door narrow, the pavement treacherous, the soup spoon unusable, the
party or lecture or trip worrisome, embarrassing.
Presumably a mole burrowing through the earth, or a deer walking warily
through the trees, does not find its world narrow, but rather spreading outward with
possibilities in all directions. That those possibilities are limited in comparison with
those available to a bird or a wild horse on a plain does not occur to the mole or
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the deer. We cannot experience a limit as a limit unless we are already aware of
wider possibilities beyond it. A prison cell limits me because I know I could do so
much more outside. It’s the comparison of those two sets of possibilities which
makes me experience the the smaller set as a limit, a constriction.
Parkinson’s limits my world, but it does not chop off my world at a certain
point. Rather my world acquires a twisted metric that measures distances and
actions in new ways, and puts parts of my space far away, or gives them a texture
that I cannot pass. This frustrates me because I still see the wider possibilities that I
once had.
That constricted world, if not challenged, grows tighter and tighter. As a
physical therapist said to me, “with Parkinson’s, movement is life, not moving is
death.” But the disease urges me to cut back on movement, and if I move, to move
in low gear. As it tightens its grip the sufferer moves less and less; in the final
stages, without the strength to walk or swallow. One of my uncles with Parkinson’s
ended up bedridden, without the strength to pick up the phone, barely able to
swallow. His daughter said that his “weakness during the last couple of years can
only be described as total.“ He died, as do many end-stage Parkinson’s patients,
from pneumonia.
Fighting Back: Forced Exercise
Parkinson’s works in many ways to slow me down: stiff muscles, fatigue, tightly
clenched hands and feet, tremor, sapped motivation. And, in less dramatic ways, it
makes me forget that I could exert more effort. It is crucial to challenge that
restriction, to try to move faster, with more grace, at a higher exertion level.
Exercise, physical exercise, is just about the only recommendation that a
neurologist can currently give when a patient asks what might slow down this
disease.
Indeed, researchers have found that the best exercise pushes you out of your
comfort level. For example, forced exercise, for instance riding on a tandem bicycle
with a trainer who pushes the pace, can improve mobility and brain function
dramatically, for a time. While those experiments involved exertion forced by
machines or trainers, even pushing myself to walk faster has a good effect. It is
important to move more and faster and more intensely. It is important to move in
different ways: walk, dance, martial arts, whatever challenges my current
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limitations. I have to get used to being awkward and accept that I will never
perform adequately, but the effort to perform new motions brings new energy even
to ordinary actions. That energy shines a ray of hope on my activities. It’s not just
that my body feels better, but that my world expands and takes on new meaning.
Expanded, more forceful and graceful ranges of motion change the world that
surrounds me. We will see later that the “forced exercise” effect is significant in
Parkinson’s time as well as space.
Re-minders
I need to be aware of the felt meaning and motion spaces of my world, and how
these are influenced by what my body feels capable of doing. I need to increase my
bodily awareness of where I am in space and how I am moving; learn to read my
world by watching how I move or imagine moving. Perceptions are shaped and
given tonality and coloration by bodily capabilities, and working to extend those
capabilities can make my perceived world richer.
It is standard to tell people who are aging to keep their brains active by
challenging the brain to learn new things, new languages, new kinds of puzzles,
follow a new interest, keep learning. These are necessary for the Parkinson’s
sufferer as well. But the Parkinson’s patient can remind the normal aging person
about the importance of physical motion and of making new efforts toward grace
and smoothness, no matter how awkward the result.
I hold an ideal of supple movement that will make me more aware of what I
lack, but will require work to train my brain and muscles to respond better. I must
try for those large graceful movements no matter what they look like to other
people. Repeat and repeat.
Parkinson’s World from the Inside: Time and Balance
Parkinson’s can upset my balance both literally and figuratively. It can make me
unable to respond quickly to a stair, or a rock in the path, or a sudden change of
direction. If I were prone to freezing I could find myself losing balance and falling if
I froze when walking with forward momentum. It’s not that I would lose the
information from my eyes and inner ear, but that the response would fail to reach
my legs and feet. Even without freezes, the feedback my balance systems depend
David Kolb, PD essay(s) 16
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on becomes irregular and confused. Quick turns can cause me to stagger into a
door frame or the person next to me.
There’s more to balance than the physical. Parkinson’s upsets my intellectual
and emotional balance. Its unexpected fatigues disrupt my balanced schedules. Its
mild depressions rob me of energy; its deeper depressions bleaken my world. Even
when my world is bright, Parkinson’s slows down my “executive function,” my
ability to plan and to keep everything in order.
“Parkinson’s is a conundrum! In order to heal, it requires you to exercise
and yet it zaps you of your energy, fatigues you and robs you of your
strength. It requires you to have a positive attitude and yet the very nature
of the condition causes you to feel anger. It demands your patience and
yet the constant daily challenges of doing even the simplest things can be
incredibly frustrating. It requires you to surrender and yet as you lose your
abilities and independence your natural tendency is to fight back. It
requires you to have hope and yet as the symptoms continue to progress
you want to give up.”2
Time goes on, but I am never without the symptoms of Parkinson’s disease.
Every few months, I go to see my neurologist, and he performs the usual tests,
cycling motions with arms and legs to measure stiffness, extending the arms to
measure tremor, watching me sit and raise my arms and walk across the room or
down the hall. We talk over my situation and any changes my wife or I have
noticed, and recalibrate my medications. I take four different medications related to
Parkinson’s, but a man I know takes eight.
That’s the way it goes, a few tests, an adjustment, an appointment in a few
months to check the medication. We usually talk a bit about recent research. My
situation is not so complex as it will become later, so the amount of fine tuning
necessary is not as great as it will be once the on and off phases really set in. Until
recently, I could wake in the middle of the night without a tremor, but when I stood
2 (My Journey with Parkinson’s ... A Natural Approach: Post 39 ... The Conundrum That is Parkinson’s
Fred Phillips http://fredphillips.wordpress.com/2014/01/29/my-journey-with-parkinsons-a-natural-approach-
post-39-the-conundrum-that-is-parkinsons/)
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up or walked around, symptoms came. Now as soon as I wake I shake. Later in the
disease, I may not be able to get out of bed until I take the meds and they begin
their work. It’s a strange foreboding to know what’s likely to come next but not
have any idea when.
Chronic Decline
Parkinson’s is a chronic disease. As that adjective suggests, it affects time as well
as space. A chronic disease is prolonged in duration, does not often resolve
spontaneously, and is rarely cured completely. It is not a discrete disease episode
that begins and then ends. Most chronic diseases have complex causes and
develop slowly. They persist over time.
“Chronic” comes from the Greek word for time (khronos). Chronos is also the
name of a mythic figure, a Titan, the father of Zeus. Chronos swallowed his
children, to avoid being replaced by them. So too a chronic disease gradually
swallows its victims. Zeus and his mother Rhea outwitted Chronos, so Zeus went
on to rule. We are not so fortunate.
Parkinson’s alters and constricts my spatial world but its changes to my
experience of time are perhaps more dramatic. This is odd, since we all, healthy or
Parkinson’s afflicted, know that we are going to decline and die, and Parkinson’s
merely makes that more obvious. But it’s not that end that Parkinson’s emphasizes
but the long drawn-out and steady decline. The chronic disease changes how I
move through time. I know that barring unlikely medical advances the disease will
progress. (It’s odd to use the word progress to talk about degeneration.) The disease
will take its own path, which changes my path through time. Everything is
shadowed by a steady loss of possibility. I see what I am doing today — buttoning
a shirt, driving a car, with the knowledge that soon this will become difficult or
impossible.
Parkinson’s world horizon has a distinctive temporal, as it does a spatial, shape
and tone. It is definitive decline, yet fuzzy, in that you know things will get worse
but you can’t say how or when. Different paces of decline converge in the later
stages of the disease; to reverse the usual metaphor, there are many ways down the
mountain, but we all end up at the bottom.
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Most people fantasize aging straightforwardly, moving along with only minor
losses, a long period of mildly diminishing activity, followed by a sudden crash, say
a heart attack or dying in one’s sleep. But few manage to live that fantasy. There
are so many ways of dying slowly. Among them Parkinson’s — which can come on
earlier than many others — opens a remorseless decline. Parkinson’s hits me in the
face with decline, every day. My downward path may be suddenly interrupted by
an auto accident or quick disease, but as I look ahead the path moves down
inexorably. I see it in a friend who suddenly gets worse. I see it in myself when my
denials of change get brushed away by a comment from a third person or a more
penetrating look in the mirror.
I watch myself and others for signs of decline. A friend said “every six months I
discover a new loss.” I wonder what may get lost or damaged in the next months.
Because my progression has been slow, I may miss the fact that something has
faded out in the last several weeks. Is this the way I used to move or speak or
think? But my self-observation is not so accurate: I think I am walking quickly or
talking loudly, but others know better.
I had been happy that in my dreams I never had any Parkinson’s difficulties. . .
until recently. Now I have been besieged by dreams of frustration and incapacity.
In a dream I am confused, unable to grasp the situation I am in, or can’t get a
suitcase packed, can’t read the money in my wallet, don’t respond to a
conversation that is going too fast for me, can’t walk well or control a tremor, and
so on — fears of future deterioration, especially cognitive decline.
Jerky Time: Ons and Offs
If inevitable decline were not enough, there are sudden daily and weekly
changes. Especially what we call “on/off” periods. My neurologist recommends that
I take L-dopa in a time release format. This means that so far, I get little sudden
relief from taking the medication, only a gradual improvement. Likewise for me
there has been no sudden drop-off, only a gradual wearing off. But that is
beginning to change, and I now carry a quick-acting pill with me for first aid when
symptoms suddenly worsen during a day. But people who take only the quick
acting form of L-dopa, and everyone at later stages, experience clear on/off
episodes. As one friend put it, he takes the medication, and in a short while he feels
a general relaxing throughout his body and is able to move and speak more freely.
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When that wears off he is once against stiff and awkward in his movements and
slow in his speech.
As the illness continues, on and off periods begin to show more strongly. People
learn private signals, a tingling in a foot or a warning clench of a muscle, which tell
them that the medication is wearing off. Over time we all fine tune the medication.
I think of that man I saw writing on the floor at a conference, then sitting calmly
later. He had found the right balance on the tightrope, but perhaps only for a few
hours. The medications are purely for symptom relief, and fine tuning them
involves trial and error. Managing the on/off problem are always topics of
conversation. We learn little tricks from one another.
Combining unavoidable steady decline with short-term changes every day and
hour gives my lived time a jerky texture similar to Parkinson’s space. Time speeds
and slows, the measure of the time-distance between events stretches and
squeezes. This loss of possibility, this twisting time, joins Parkinson’s shrinking and
twisting spatial world.
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3. Excellent Life: Expanding the Present Moment
The Philosopher at Bay
After my diagnosis and especially when my problems with movement and
cognition became more intrusive, I asked myself: what kind of life could could I
now lead? Devoted to philosophy, I found myself worried about whether I could
continue, and I looked to thinkers I had come to love, to see what I might
appropriate for myself. There are plenty of philosophical issues in this
neighborhood: big fuzzy issues like “the meaning of life” and “the problem of evil,”
moral issues such as how to apportion scarce time and resources in medical care-
giving. These questions have long histories.
But my aim was more personal and practical: what qualities of life and attitudes
do I try for? What can I learn about how to approach life in Parkinson’s world of
twisted space and time? I have been trying to find for myself a mode of coping with
the disease. I am not looking for a philosophical definition, but a “care of the soul,”
as Socrates said, a way of envisioning and approaching my Parkinson’s-inflected
downward life.
My undergraduate education concentrated on the literature and philosophy of
the Greeks and Romans. So I found myself phrasing my question in terms of what
the ancient Greeks called areté, excellence. An excellent racehorse runs well and
wins. An excellent knife cuts smoothly and easily. Excellent soldiers are skilled and
brave, but not foolhardy; they know when to fight and when not to fight. An
excellent musician possesses skills with musical instruments, plus emotional
sensitivity and expressions, plus stamina for long hours of rehearsal and
performance. What would an excellent human life with Parkinson’s be and feel
like? What attitudes and traits of character should I strive to develop? What habits
should I develop and what goals should I aim for, to navigate the space and time of
this twisted downhill world?
I should try to develop empathy, courage, and patience, traits that anyone
suffering a long-term disease will need for dealing with pain, depression and lack
of energy. Are there habits and character traits that will be specially needed to
make life with Parkinson’s as excellent as it can be?
Forced Exercise: The Present Moment
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Parkinson’s symptoms have much to do with motion. Tremors, dyskinesia,
slowness blur my motions and twist my presentation of myself to others. So traits I
should develop include bodily habits, ways of walking and holding myself, ways of
moving through space.
My physical therapist had said that “with Parkinson’s, motion is life and lack of
motion is death.” He was talking about refusing to let Parkinson’s keep you
immobile or moving always in low gear. Push your limits; keep moving even if
your spatial world gets twisted and filled with new distances and obstacles. Keep
trying for graceful movements through all the tremors and stiffness and freezing.
I asked myself: might there be a temporal equivalent of that spatial advice? Is
there a way in which motion in time is life for Parkinson’s and lack of motion is
death?
At first glance this seems a silly question. Of course if we stop moving through
time, we are dead. But we can’t be urged to move through time differently; time
marches on; we can’t change its pace.
But we Parkinson’s patients are indeed counseled to change our movement in
time. Go more slowly. Pause, look around, enjoy the present moment. Because the
disease forces us to pay more conscious attention to ordinary actions that most
people perform automatically, Parkinson’s victims often say that the disease has
offered them a gift: Parkinson newsletters and books frequently contain
encouraging testimonials about how, despite its depredations, “Parkinson’s made
me more aware of my life” or “enriched my awareness.” We hear the self-help
mantras about “living in the present moment.” Be here now. Stop moving anxiously
through time.
Conflicting Advice
I am told to get up and move in space, but to let it be with quiet awareness in
time. Move! Slow Down! Space seems at war with time. Yet the two do and must
go together. Earlier I spoke about moving gracefully, and Parkinson’s does force
you to move more mindfully. So, try to develop a quiet awareness of graceful
steady forward motions in time and space.
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In a way, this summarizes the general advice Parkinson’s patients receive about
navigating the space and time of our world. If we could achieve it we would
improve the way we inhabit our disease and its world.
Still, I wonder if it is enough. Earlier I mentioned the research showing that
“forced” physical exercise is even better than regular exercise. When a Parkinson’s
patient is forced to a higher level of performance, greater speed, more effort than is
normal, whether on a tandem bicycle, a treadmill or other device, Parkinson
symptoms are markedly reduced. Pushing us out of our comfort zone encourages
new neurons and brain health.
So I ask again: Is there a temporal equivalent to spatial forced exercise? Is there
a way to “force” ourselves to move through time “faster” or “with more effort,” out
of our steady comfort zone, that makes our bodies and minds work and grow?
I did find a temporal version of spatial “forced exercise,” but finding it
recapped a long philosophical journey. It started with Greek philosophers from my
language classes reminding me how being in the present means awareness of the
present moment’s larger context. Then European philosophers from my early
philosophy classes returned to show me how the present moment ties to its past
and future. That brought motion in time into the heart of being in a meaningful
present moment. Then, echoing from later readings, the call to authenticity showed
me what “forced” or strenuous motion in time would be. The key is to look more
carefully at what it could mean to “be in the present moment.”
Forced Exercise: Reaching for Context
One of my college professors, an amazingly learned and quick witted teacher of
Greek and Latin, led my class through dramatic, poetic, historic, rhetorical texts. I
came away with a special appreciation for the Greek and Roman poets such as
Sappho and Horace, and the philosophers Plato and Aristotle, and the Stoic writers
Marcus Aurelius and Epictetus.
In the winter of 2014, I looked in my mirror and realized that my search for
excellence in life with Parkinson’s was edging me towards those Stoics. Four years
earlier I had posted on that mirror the words THINK LOUD. These came from a Lee
Silverman voice training class which had helped me combat the tendency of
Parkinson’s patients to speak too softly while imagining that they are speaking
adequately.
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I liked having the reminder on my mirror and I decided to post some other
things there. So I had posted two poems by the Roman poet Horace3 on my mirror,
telling myself that I was trying to strengthen my Latin reading skills.
But when I thought about what the poems said I realized that I was facing my
own illness and decline.
One of the poems I posted is long, but the first verse shows its tone:4
O Postumus, my friend, think of the years,
And how, my Postumus, they slip away,
Till old age brings the furrows ploughed by tears
And death, which piety cannot delay.
The second poem was the most important. Here is the entire short poem:
Leuconoë, don’t ask, we never know, what fate the gods grant us,
whether your fate or mine, don’t waste your time on Babylonian,
futile, calculations. How much better to suffer what happens,
whether Jupiter gives us more winters or this is the last one,
one debilitating the Tyrrhenian Sea on opposing cliffs.
Be wise, and mix the wine, since time is short: limit that far-reaching hope.
The envious moment is flying now, now, while we’re speaking:
Seize the day, place in the hours that come as little faith as you can.
This poem is the source of the familiar phrase carpe diem, seize the day (the
Latin verb carpe suggests harvesting, not grabbing or stealing). It’s worth noting,
too, that rhetorically the poem is a seduction appeal to get a woman into his bed
by encouraging her to drink the wine and live up the moment.
Horace, like many Romans of his time, the first century B.C.E, was familiar with
both Stoic and Epicurean teachings that had originated in Greece several centuries
earlier, and combined them in his personal views. So I asked myself whether my
search for a life with Parkinson’s should attend to those philosophers, if I could get
beyond the simplistic slogans their ideas are often reduced to.
3 Horace (Quintus Horatius Flaccus) lived from 65 to 8 B.C.E., during ths last years of the Roman
Republic and the first years of Augustus’ Empire.
4 Translation by Len Krisak. The Odes of Horace (Fyfield Books)
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I decided to see what I could learn about the Stoic and the Epicurean views
about illness. Though the two schools are opposed in many ways, their attitudes
towards illness turn out to be so similar that Marcus Aurelius, one of the greatest
Stoic writers (and also, as it happened, a Roman emperor) can praise Epicurus, the
head of the rival school, for dealing with illness as a true Stoic should. He writes:
Epicurus says, In my sickness my conversation was not about my bodily
sufferings, nor, says he, did I talk on such subjects to those who visited
me; but I continued to discourse on the nature of things as before,
keeping to this main point, how the mind, while participating in such
movements as go on in the poor flesh, shall be free from perturbations
and maintain its proper good. Nor did I, he says, give the physicians an
opportunity of putting on solemn looks, as if they were doing something
great, but my life went on well and happily. Do, then, the same that he
did both in sickness, if you are sick, and in any other circumstances.
(Meditations, book X)
Epictetus, a Stoic writer who influenced Marcus Aurelius (and was, as it
happened a slave), began his teaching manual by saying:
Some things are in our control and others not. Things in our control are
opinion, pursuit, desire, aversion, and, in a word, whatever are our own
actions. Things not in our control are body, property, reputation,
command, and, in one word, whatever are not our own actions….
Remember, then, that if you suppose that…what belongs to others is your
own, then you will be hindered. You will lament, you will be disturbed,
and you will find fault both with gods and men. (Epictetus, Manual
(Enchiridion), 1)
And later Epictetus said that
Sickness is a hindrance to the body, but not to your ability to choose,
unless that is your choice. Lameness is a hindrance to the leg, but not to
your ability to choose. Say this to yourself with regard to everything that
happens, then you will see such obstacles as hindrances to something
else, but not to yourself. (Epictetus, Enchiridion, 9)
A later Stoic writer added:
Pain is slight if opinion has added nothing to it; ... in thinking it slight, you
will make it slight. Everything depends on opinion; ambition, luxury,
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greed, hark back to opinion. It is according to opinion that we suffer. ...
So let us also win the way to victory in all our struggles, – for the reward
is ... virtue, steadfastness of soul, and a peace that is won for all time.
(Seneca, Epistles, lxxviii. 13–16)
Then I found Epicurus himself5 saying in one of his letters:
These are the root of all evil: fear of god, of death, of pain, and desire
which goes beyond what nature requires for a happy life. . . . This is the
height of pleasure: to be free of all pain and discomfort in both the body
and the mind. When this pleasure is present, all pain, of both body and
mind, is absent…. Illnesses which cause excruciating pain last only a
short time and then you are free. Illnesses which cause mild pain may last
long but it is possible to live in such a way that the pleasures of life far
outweigh the discomforts. Either way, pain is nothing to fear. (Letter to
Menoecius)
So I found the Stoics urging self-control and firmness in the face of illness. We
still use the word “stoic6” to describe an attitude of resigned acceptance of events
with controlled emotions. As Marcus Aurelius said
From Apollonius I learned freedom of will and undeviating steadiness of
purpose; and to look to nothing else, not even for a moment, except to
reason; and to be always the same, in sharp pains, on the occasion of the
loss of a child, and in long illness. (Meditations, bk I)
These philosophers tell us to acquire an attitude or trait that the Stoics called, in
Greek, ataraxia, unshakableness, Their Epicurean rivals called their version
apatheia, unsuffering.
5 Epicurus died, perhaps from prostate cancer, after several weeks of illness. At the point of death,
Epicurus wrote in a letter to his disciple Idomeneus: “On this blissful day, which is also the last of my life, I
write this to you. My continual sufferings from strangury [blockage of the bladder, resulting in severe pain]
and dysentery are so great that nothing could augment them. But the cheerfulness of my mind, which arises
from the remembrance of our past conversations, counterbalances all these afflictions. I am asking you to
care for the children of Metrodorus, in a manner befitting the devotion you have given to me and to
philosophy since you were a youth” (Diogenes Laertius, Lives of the Philosophers, 022). “Hermippus relates
that he entered a bronze bath tempered with warm water, asked for a cup of undiluted wine, and drank it.
He then bade his friends to remember his doctrines, and expired” (Diogenes Laertius, Lives of the
Philosophers, 016).
6 The word originally comes from where the early Stoics discussed their teachings, at a public colonnade
in Athens; such buildings were called stoas.
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They agree in telling me that I cannot control outside events, nor stop my
immediate emotional reactions, but I can control my reactive opinions and
feelings.
This may should like a matter of sheer willpower, but it actually depends on
having a larger view of yourself and the cosmos which gives you room to pull back
from the immediacy of your illness or suffering.
For instance, in July 2014 there were weeks when my symptoms intruded more
seriously: my energy level was low; I was dizzy, had problems with balance, more
mental confusion. I lost weight. I couldn’t motivate myself to get the exercise that
might stabilize or improve my situation. I fell into a spin of fear: I told Anne that
“the disease is getting much worse; I’m descending to a lower level; I won’t be able
to continue doing what I’m doing; it’s going to be over before I realize it; how do I
rearrange my life?”
As these fears spiraled, I tried to take a wider view and control my reactions. I
told myself that what I fear could be true, but that in the past there had been other
descents and I had come out of them, if not to the same, at least to a good level.
Getting that perspective helped slow the fears and freed me up to take the steps I
needed to do. By the end of July I was back to “normal.” I know full well that these
episodes will happen again and that at some time the fears will be justified, but I
have proved that I can handle my reactions to these episodes and stay on an even
keel despite the fears.
This better control of my fears does not come merely by increasing my resolve.
The key was seeing my present fears in a wider context and new perspective.
That’s also what the Stoics and the Epicureans said we should do, understand the
context of our momentary experiences. But they urged us to see the Larger Context.
The two ancient schools differed strongly, though, on what that context was. For
the Stoics my illness is part of a plan, a role written for me in the rational play of
the world. In this it resembles — and influenced — the standard Christian appeal to
divine providence. The Stoics did not demand that I understand my role in that
play. I should fulfill my calling, confident it contributes to an overall pattern.
(Needless to say, this made Stoicism popular with governments.)
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At one time I might have found similar solace in God’s unknowable plans, but
time and philosophy had led me away from such beliefs.
On the other hand, the Epicureans told me to see my illness as a random result
of chaotic activity. Their world contains only the purposeless collisions of tiny
atoms rebounding in an infinite void. There is no reason to my illness; it was not
sent to test me; I will not be judged on how I deal with it, and yet I can learn to
deal with it calmly and generously, refusing to allow the overall tenor of my life to
be determined by such random events. This seems truer to me, as far as it goes, but
it doesn’t go far enough to help me live my daily life. The Epicurean vision
discourages civic duties and large projects; an excellent life for them is to relax and
live our private lives simply and pleasurably7. This is too relaxed, and I am looked
for guidance for forced exercise, for a way to live the present moment more deeply
and intensely, just as forced physical motion does for my body in space.
Besides, these ancient philosophers offered most of their advice to people
suffering from painful episodes of illness that would either be cured, or soon lead to
death. Can their suggestions be applied to chronic illnesses that go on and on and
on? It is just not true that in a chronic illness “the pain soon ends,” and with
Parkinson’s it is not so clear how “it is possible to live in such a way that the
pleasures of life far outweigh the discomforts.”
A chronic disease amplifies mortality. The healthy person and the Parkinson’s
sufferer both face the ultimate closure of the future. But Parkinson’s patients, and
all who suffer serious chronic disease, face that end as an everyday loss. It affects
every action and enjoyment and project, no matter how small. We must make great
effort just to get our daily lives going well enough. I can learn from the ancients
how my “present moment” includes more than my immediate perceptions, and
they show me how becoming aware of that larger context can change my way of
living through my illness. But to apply the ancients’ advice to chronic illness, I
need a closer examination of how we should “seize the day” or “live in the present
moment.”
7 Where the Stoics recommended duty, the Epicureans taught the search for pleasure (governments did
not favor the Epicureans.) The Stoics accused the Epicureans of promoting wild and lascivious pleasures, but
this was false. Epicurus taught that nothing contributes more to serenity than a simple lifestyle that is not too
busy, that does not demand that we engage in disagreeable tasks, and that does not require us to push
ourselves beyond our power and strength. Epicurus called his private place of teaching “the garden.” That
sounds a lot like what Parkinson’s sufferers are often urged to do: enjoy the present moment.
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Forced Exercise: Time and Times
Even seen within its context in nature, the moment can seem a static picture.
What can bring the present moment into movement?
I can imagine breaking away from time, shutting out past and future in an
immediate experience of sensuous presence. I can concentrate on the sensuous
present, slow down, be aware of sights and sounds and tastes and smells and music
and landscapes. I can shut out distractions and look more intently. A mountain
landscape or a blooming tree in spring can stop me in my mental tracks and let me
see. A Rembrandt portrait, a wild iris in the grass, an unexpected melody, a
surprising architectural effect will pull me out of daily busyness. The intensities that
result from such encounters can wake me up, change me.
I’ve read how brain damage can do even more, removing language while
leaving purified perception. For instance, neuroscientist Jill Bolte Taylor describes
how a dangerous bleeding in her brain silenced her language ability. At the
moment when others were seeing her as unable to communicate and crippled
bodily, she was feeling quite differently:
When I lost my left hemisphere and its language centers, I also lost the
clock that would break my moments into consecutive brief instances.
Instead of having my moments prematurely stunted, they became open-
ended and I felt no rush to do anything. Like walking along the beach, or
just hanging out in the beauty of nature, I shifted from the doing-
consciousness of my left brain to the being-consciousness of my right
brain. I morphed from feeling small and isolated to feeling enormous as
expansive. I stopped thinking in language and shifted to taking new
pictures of what was going on in the present moment. I was not capable
of deliberating about past or future-related ideas because those cells were
incapacitated. All I could perceive was right here, right now, and it was
beautiful. My entire self-concept shifted as I no longer perceived myself as
a single, a solid, an entity with boundaries that separated me from the
entities around me.… My soul was as big as the universe and frolicked
with glee in a boundless sea.8
8 Jill Bolte Taylor, My Stroke of Insight (xx) (Pages 68 and 69).
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Even without such extreme experiences, immersion in the sensuous present,
perhaps through an art work, can be a vivid, even life changing event. But for all its
importance, these experiences are not yet living in the present moment as it fully is.
For one thing, to experience a series of such intense moments as a series is to
involve more than one present moment. Each moment contains in itself a past and
a future.
Recalling the example of the hill in the park mentioned earlier. I understand that
any perception in the present gets its meaning from its involvement in projects
relating past and future. I see the hill as hard to climb because I have already
related my past experiences with Parkinson’s to my thought of climbing it. The hill
enters my Parkinson’s inflected world as difficult. All sorts of neural events and
unconscious inferences may be going on behind the scenes, but my world comes
already meaningful in terms of projects9, both mine and my community’s, that
already tie together the moments and motions of time.
Moments in time get their meaning from those cross-temporal relations. To be in
the present moment fully includes what it retains of the past and its projections of
the future and of its world, a general sense and import for the whole.
That is to say that the present moment, when it is more than the pure non-
linguistic fullness Dr. Bolte described, is already more than an instantaneous
present. It is involved in, it is moving in time. To focus on the present moment as
an instantaneous sensation or a flitting perception is to deny temporal motion, to
freeze time and cut its complex unity. To see the present moment in its connections
and context, in its rising from a past and opening up a future, keeps it mobile: fluid
life, not the repetitive freezing of instantaneous moments divorced from one
another.
Forced Exercise: Authenticity beyond the Everyday
9 The world “project” comes from a Latin word meaning to throw forward. Think of a projectile: a
baseball, an arrow, canon ball. Or singers projecting their voices. Out beyond and away. The German
equivalent (Entwurf, used by Martin Heidegger) means to throw outward. It’s the metaphor of throwing that I
want to highlight. It’s not the details of a plan, rather the opening up a space between now and a goal, a
future that can be filled with a plan.
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Truly to live with Parkinson’s in the present moment means keeping temporal
connections both to my lost flexibility and to my future of degeneration. To leave
those out would be precisely not to be in the present moment as it is.
Going back to the metaphor of horizon, I see that what I need is a way of being
toward and with the world across the disease rather than allowing the disease to
occupy my entire horizon. The notion of seizing the day or living in the present
moment should not constrain me to the immediate givens of perceptive
consciousness, but should lead to expanded awareness.
Most of the “treatments” recommended for Parkinson’s, especially physical
exercise, imply facing up to degeneration and taking active steps to slow it down.
It’s not about quaffing pills while enjoying the present sights and sounds,
relationships and tastes. It’s about seeing these present moments within a horizon
that emphasizes their fragility, makes them valuable, and spurs us to enrich them,
and this in turn calls us to find or create tasks and meanings larger than our own
physical condition.
We all know that in any moment we could die from a brain embolism or a car
crash or a sudden explosion or myriad other causes. But shouldn’t we just go on
with our activities and goals beyond those dire possibilities? Better to be in the
midst of a project when death happens. Keep projecting goals and activities until
something strikes you from outside. Why not?
But, Parkinson’s strikes from inside and the blow has landed before you become
aware of it. That sense of having been overtaken, with its certainty of decline,
means that your activities and goals have a new fragility about them. Possibilities
are always fragile, always dependent on factors not all of which we can control,
but with Parkinson’s that loss of control is doubled and thrust at your face.
Perhaps I should ignore that shadow and just go on living projects and episodes
as interesting, ongoing, absorbing or boring activities, each one stretched out in
time, but with no particular thought about the inevitable ending that will suddenly
strike from outside and cut off all these activities. Ii I go along with ongoing
projects for action and social roles that I have simply accepted as “what one does.”
Most of us live that way most of the time. We are defined by an anonymous “they”
that we find ourselves in without ever having chosen.
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Another style of avoiding the shadow would be to flit from one enjoyment to
another, one intense event to a dull event to a new interest to…. This is what Søren
Kierkegaard in the 19th century called the “aesthetic” lifestyle, Don Juan moving
from one conquest to another, always beginning again.
I suppose it might be possible for me to live those ways, except that with
Parkinson’s I would have to constantly avert my gaze from Parkinson’s twisted
space and time. My world is on a downward trend even at this moment. Death
awaits. If I ignore this I am forcibly reminded every morning. And, as Tolstoy and
Heidegger remind me, I die alone; no one can do it for me. This should make me
realize that no one can live my life for me, though it happens all the time.
Boredom or anxiety or strong experiences of love or action or art — or an illness
such as Parkinson’s can call me to “take up” my life as “my own” (Heidegger calls
this “living authentically.”) I can “seize the day,” with its past and its possibilities,
not just its immediate sensory content.
I can take up my existence as a whole, and that involves more than my present
set of symptoms and perceptions. My world, my existence, extends out into (and
as) a spatial and temporal world, no matter how twisted those might be. I can
shape my life, finding in my already past and my present moments possibilities
and tasks that call me toward a future of renewed creative action. I can embrace
the limitations of my life and situation by “resolutely” answering the call of past
and future. I unify my time, not letting it fritter away in one excitement or project
followed by another. Living authentically means means embracing my existence in
time, with purposes given urgency by the awareness of my limited time and finite
meaning.10
This is to have larger contexts and to see the Parkinson’s within a horizon of
tasks and projects, dramatic or not, that keep me from simply identifying myself
with the restrictions and slowdowns of the disease. This accepts the full reality of
the disease, with its degeneration, but also with calls to possibilities and
meaningful tasks.
10 Talk of authenticity, of truly owning my own life, may appear to urge me to be a solitary self that
stands resolutely apart from the inauthentic crowd. This solitary figure might be a lonely Nietzschean thinker,
a disenchanted artist, a Dostoyevskian rebel. Such goals have a romantic allure, but in the end their self-
magnification turns into self-reduction. The true solitary thinkers and artists do not set out to be lonely rebels.
Rather they take up a cause or a thought or an artistic project whose relation to current opinions ad practices
forces a lonely role role upon them. The romanic self-image is not their goal.
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This all sounds quite inspiring, but is it really useful for me or for anyone with
Parkinson’s? The disease reduces my ability to act forcefully in the world, whereas
philosophical and artistic rhetoric about authentic living is full of words like
courage and resolution that imply forceful striving forward. That’s one thing
Parkinson’s won’t let me do, either literally or figuratively.
Might we say that someone working on a limited task for a local community, or
a Parkinson’s support group, or even someone whose activities can extend only as
far as stringing beads in a nursing home, might still be living a resolutely authentic
life, involving much more than self care or mere endurance.
Parkinson’s patients often dedicate themselves to tasks defined by the disease,
becoming activists searching for a cure, crusading for public acceptance and
funding, creating groups to help fellow sufferers. So here I am writing this essay.
But a Parkinson artist or writer or scientist or politician may take up tasks in art or
writing or politics or science that have nothing to do with the disease; so I write
memos for community groups and essays about architecture and about philosophy.
The challenge is to create something that orients my time and space away from
just coping with my own daily twists, blockages and disruptions.
My local world will shrink as Parkinson’s goes on, but the larger background
world does not, though it may become difficult to keep that horizon in view. The
authentic self is one that takes responsibility for its projects creatively, with
awareness of its responsibility to bring and receive meaning in that world. There is
no magic formula. The best we can do is look for open responses, creativity and
compassion.
Realizing this, I removed Horace’s poems about death from my mirror and
replaced them with some of his poems that celebrated love, engagement, and their
unexpected consequences. In particular I liked a poem where the poet seems
distant but in the end his feelings cannot be denied.
What perfumed slender lad now comes to woo you,
Pyrrha, mid the roses in the pleasant grotto?
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For whom do you bind your golden tresses in your artful
Artless fashion?
Poor boy! Amazed, he will rue the broken promises
And stare at scowling gods and stormy seas;
He’s unsuspecting
And hopes to love you ever; your golden charms
Remaining always lovable to him alone
He’s yet to recognize the deceitful breeze.
How I pity
Those you dazzle, gleaming in your untried splendor.
A tablet on the wall of Neptune’s temple
tells I offered to the mighty God of the sea
my dripping garments.11
Here Horace remembers the stormy conclusion of his passion for a lady as
unpredictable as the sea, but he cannot avoid still feeling her attraction. I have long
enjoyed this poem; in fact I wrote the above translation as a homework assignment
in 1960. In the act of writing the poem, Horace’s feelings do not go away, but he
can view them with rueful irony. What he achieves is not distance from his
emotions to so much a wider space to be with them in a less pressured way. I can
try live that way with my disease, as part of living wider projects.
In this section I have been investigating the space and time of Parkinson’s
world, wondering how I can respond authentically, and finding a richer meaning in
the common slogan that we should live each moment to the fullest. While full
living certainly should include as intense sensory perceptions as I can manage, it
should also include the context, history, and horizons that make the sensory
perception meaningful. Plus discerning possibilities in our world, seizing them and
responding to them creatively, to enrich the density and authenticity of life with
Parkinson’s.
11 Horace, Odes 1.5
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4. Coming Down the Mountain: Decline and Dementia
In the first part of this essay I affirmed that “I am stubbornly present and I don’t
plan to stop writing and creating.” Now I ask myself, as I stand dictating, just how I
am facing the disease. I worry whether my response is adequate, especially
because it makes me face my long-term professional identity. I do take more time
now for reading novels and seeing films, if not for smelling the roses (Parkinson’s
deadens your sense of smell). Should I be reemphasizing or loosening my
professional identity? Am I dodging aspects of my situation?
I imagine a situation where I am bedridden, unable to swallow, fed with a
feeding tube, distracted and confused most of the time, All this leads to a worry
about being a burden, especially on Anne, of restricting her life and capabilities
and her contributions to others. Yet I will need the help. Then I might reach a point
where it would be time for what the ancient Stoics called “the reasoned dismissal,”
and I do live in Oregon, where that is legal. But could I reason, in that condition?
Later, in the last part of this essay I try to imagine some ways to deal with my own
possible future dementia.
How is it Going?
But, people have said, you seem to be doing very well despite the disease.
Look, you travel – last year you spent three weeks in Turkey. You are still writing
and occasionally give talks.
It’s true, my activities have not yet been too deeply curtailed by the disease. But
it’s also true that my space and time have changed in the ways I described. Some
activities and goals become too distant, others become twisted, accomplished only
with difficulty, and all are threatened by a new fragility, against a horizon of
decline.
For the first two or three years, my disease was not noticeable to the uninitiated.
I heard my sister saying to a friend that you couldn’t tell that David had
Parkinson’s. Especially if I kept my left hand in my pocket. But that’s no longer true.
During the last few years many people have looked at me briefly and said, you
have Parkinson’s. Others have said or thought, what’s wrong with your hands or
your face? Or, often, what did you just say?
David Kolb, PD essay(s) 35
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If I am not careful now my voice becomes softer and my articulation less clear.
My dictation software makes more errors now, complaining because I don’t
pronounce the words the way I did. Correcting those errors with the keyboard is
much more difficult than it was even a year ago.
Whether I am careful or not, my hands shake much more noticeably, often both
of them, and my left leg shakes even when I am standing. My handwriting has
degenerated; unless I write slowly and large I can’t read my own notes. I walk more
stooped over. I have developed a tremor in my lips that I am often not aware of; it
bothers people. With concentration I can stop it, but only for a few moments.
At a summer party I had occasion to bring up my Parkinson’s and the person I
was conversing with said “I had noticed that already.” Two years ago a security
guard at immigration control in Sydney, to whom I had just handed a document,
said to me that he had the same disease that he saw I had, and he didn’t consider it
fair since he had always taken good care of his body, eaten well, exercised. Why
should he be afflicted with this illness, weakness, difficulty in performing his job?
We commiserated with one another on the inability to identify any reason why we
should have been afflicted with the disease.
A year later I was bargaining with a rug salesman in Turkey who was a retired
doctor, and he interrupted our conversation to say: you have Parkinson’s, don’t
you. And he asked me about my drug regimen.
The most surprising of these episodes was when we were taking a taxi from a
hotel to an apartment in Istanbul. I had spoken a few sentences to the taxi driver in
my scanty Turkish, giving him the address of the apartment. We exchanged a few
words as he drove, with me in the back seat. When we arrived and I was paying
him he said to me, you have Parkinson’s. I said yes. He said that his father had
Parkinson’s and was very shaky. He said that if I wanted treatment the such and
such clinic at such and such hospital in Istanbul was the best in town and could be
very helpful. I thanked him. We parted smiling.
Still, my friends will say, you are traveling. You were in Istanbul when that
happened with the taxi driver. You were speaking a little Turkish, for heaven’s
sake. That’s true. But they don’t see how the difficulty of travel has increased, my
new fatigues, occasional disorientation, and little things like my increasing troubles
David Kolb, PD essay(s) 36
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eating soup, which I now avoid ordering. They may not realize that I now avoid
pouring liquids or carrying full glasses and bowls.
They don’t know how hard it has been to compose my last several public talks
when I find increasing difficulty in concentrating my mind on the task at hand. I’m
beginning to feel an on/off rhythm with my meds. And compared with the trip to
Turkey last year, on a trip to Arizona this year I was much more affected by fatigue
and difficulty walking long distances.
It’s likely that I’m part-way through stage two of a five-stage disease.12 While my
neurologist’s 10 year prediction in 2006 now seems too pessimistic, in year nine
the disease is catching up. Plus, I see my friends in the support group growing
weaker and less able to stand or walk straight, less able to do what they could do
six months before. And my wife, who attends a caregiver group, hears sobering
stories of the advanced stages of the disease. I don’t hear those details, though I
understand in general what is likely13. With all these changes and signs, I feel an
accelerating motion downhill.
Moving into Dementia
That downward motion will end, as it does for us all, with my death. I have
already showed how the awareness of my individual death should motivate me to
take up my finite life in an authentic way and carry out its projects creatively and
as energetically as my disease will allow. I’ve also shown how each moment on the
downhill slope urges an awareness of its full context and meaning.
But lurking on that downhill slope with Parkinson’s is something that makes my
advice for living a quality life with Parkinson’s seem futile. Cognitive difficulties
increase as Parkinson’s goes on, so my advice seems self-frustrating. Considering
the possibility of dementia, my advice seems worse than useless; it may bring me
into despair.
12 The five stage Hoehn and Yahr scale, with added sub-stages, dates from 1967. Appendix Two shows
the stages. Most neurologists, however, now use the more complex Unified Parkinson’s Disease Rating Scale
that provides a number from 1 to 100 based on a wide range of factors that are evaluated by a physical exam
and a long set of questions for the patient.
13 There is an additional problem now, unrelated to the Parkinson’s. I have acquired a disease called
polycythemia vera, a form of bone marrow cancer that leads to an overproduction of red blood cells and in
my case of platelets. It is treated by monthly bloodletting and by and a regime of daily chemotherapy drugs,
likely increasing my fatigue and feeling out of breath.
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Researchers are unsure what percentage of Parkinson’s patients will suffer from
dementia if the disease goes on long enough. The figures range from twenty to
eighty percent; the higher estimates are the most recent. Everyone with Parkinson’s
suffers mild cognitive declines, first noticeable in executive function. To plan, to
stay concentrated, to do more than one thing at a time, these become more
difficult, as does the management of activities, scheduling and keeping one’s life
efficiently on track.
Later can come increased difficulties handling large data sets, losses of memory,
and eventually full dementia. But dementia has degrees and kinds. There is some
evidence that the kind of dementia associated with Parkinson’s disease can (but
may not) differ from that associated with Alzheimer’s. With Parkinson’s there seems
to be less erasure of the personality and the past, rather an increasing difficulty in
accessing them. But the access may often still be there, with the past and
personality available with difficulty. My uncle who died from advanced Parkinson’s
disease was demented some of the time but not always. My cousin wrote to me:
During the late-middle period Dad was more often delusional--for
example, believed he was back in his parents' home on Greendale Ave.
in Edgewood PA. For quite a long while he insisted he was in Canada and
would demand to go home--even when he was at home. By far the worst,
however, was when he was sure there were spiders, etc., or opening
cracks, on the ceiling of his room. Dad's dementia was much worse at the
middle stages than during the last year. I suspect the medication regime at
the nursing home/hospice, where he spent the last 13 months was strong
on sedatives and antipsychotics and at some point opiates, and the
environment there was calm and comforting--plus the staff were attentive
and quite humorous (what Kolb could resist that?). Palliative care all
around.
Dementia has become a personal issue for me. I’m involved in a research
program involving frequent memory tests, and I find myself increasingly frustrated
when I can’t get beyond a certain level as the tests get more complicated. Also, I
remember a remark from my neurologist. Like most doctors he dictates a summary
for the patient’s chart, but unlike most he dictates in the presence of his patient. In
that dictation I thought I heard him use the phrase “mild dementia.” I’ve not had
the courage to ask him what he meant, but you can imagine how that shook me
David Kolb, PD essay(s) 38
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and twisted my time horizon. My wife and I had noticed increased episodes of my
forgetting promised tasks or requested actions, and I have had one or two
frightening episodes of disorientation while driving.
The prospect especially frightens me since my identity and activities have been
so centered on speaking and writing and thinking. So is it foolish of me to tell
myself to try for awareness of context and connections as a way to live more fully
in the present moment? Cognitive decline weakens any suggestion that relies on
awareness, and weakening executive function would seem to cut the chances of
responding authentically in that context. So I fear that my advice for living a life as
excellent as I can with Parkinson’s will all fail if cognitive powers fade.
However, I hope that the kind of awareness of the moment that I am trying to
describe is not hyper-intellectual, and authentic response does not depend on
extraordinary executive function. My wife and I were visiting a famous potter in
Japan. He handed me a large faded ceramic. I was impressed by its feel. Then he
said, “That pot is from China; it is 3000 years old.” My visual impression of the pot
had not changed, but suddenly my experience of it was more resonant and
deeper-– and a bit scary, so I put the pot down. What had changed was the horizon
of meaning and activities surrounding the pot, a change stimulated by one fact plus
some background awareness of Chinese history. It was not a great theoretical
enlightenment; it was a different practical feel to the pot in my hands.
Or consider that on our trip to Turkey we visited ancient sites in southern
Turkey, some pre-Greek, others Greek, most with Roman buildings. I have
knowledge about ancient civilizations, especially Greek and Roman. My
experience of those ruins was deepened by that background, but it was not as if
particular facts or quotations were coming to mind. It was more that the places had
connections which I knew could be explored, and had an experiential heft because
they were not just “old” but old against my background knowledge of how people
lived long ago. Again, that requires some knowledge, but it is not an awareness
which is a presentation of that knowledge. Rather it is a sense of experiential
directions and connections to actions and to values.
I’m not denying the intellectual component in this awareness, but the kind of
awareness which can make the present moment thicker and more hefty does not
require explicit recall of facts figures and histories. The world, to use Heidegger’s
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term, broadens and deepens its connections. Maybe I will forget facts and dates,
but couldn’t I retain some background sense of values and history, of the modes
and moods of being in other times?
Authentic response to my situation depends more on the ability to heed a call
than on the ability to plan and execute with precision. Taking up my existence as a
whole does not depend on having a clear intellectual vision but it seems to
demand sensitivity to where and how I am, and a sense of myself as responsible —
a sense of myself with my past. Maybe not the details, but a sense of unity with the
old me? Won’t dementia fade out my awareness?
Self-identity in Dementia
Western philosophy does not deal well with dementia. Most philosophical
advice for crafting one’s life, at least in the tradition descended from Socrates,
depends upon awareness backed up by argument. Socrates’ injunction to “care for
our souls” rings shallow if our souls and our ability to care are evaporating. At best
there is the Stoic and Epicurean advice to cultivate as far as possible an unruffled
state of mind that accepts what has been given and tries not to overreact.
What about other philosophy less dependent on Socrates’ program of argument
and self-criticism?
I’ve spoken about expanding the present moment with wider points of view.
Such intellectual-emotional movement creates room and perspective. But we can
also learn of another kind of widening the present. It’s not a sinking below, nor is it
a rising above, as if you could leave behind the sordid realities of the disease. It’s a
surrounding, letting be, compassion toward myself. This can be practiced; it’s a
kind of spiritual formation, or care of the soul, or making a life.
Meditation teachers say that when in pain one should stop fleeing the pain, just
let it be, examine its qualities, and see how the negative aspects of the pain are
partly due to the attempt to get rid of it. This will not make the pain disappear but
will reduce its urgency. Sometimes I can manage to do that with pains and lessen
the inner tension. Can the same be done with the shakes and tremors and
restlessness of Parkinson’s? I have tried, with occasional successes, but have more
often failed at the task. Yet the task is worthy.
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It’s very difficult to sit and relax whether in a chair or in a meditative position
when my feet and hands are shaking and my body refuses to be still. How can I
deal with this uncontrollable movement? It’s not a matter of going to a level below
the Parkinson’s, which I cannot do, but, as with a pain, of embracing and accepting
the shakes and tremors and restlessness, and not letting them disturb a calmness of
mind. Yet Parkinson’s is also making my mind jittery and flighty. I have to find
ways to accept the symptoms not by sinking below or rising above them but by
expanding and surrounding them, viewing my diseased self with open, rueful
acceptance rather than fight and flight. This is another kind of achievement,
difficult, but less dependent on my cognitive abilities remaining sharp.
But the fear remains. Given dementia threats ahead for my friends and for me,
what can I say to those who are becoming diminished, how should I regard
diminished friends? More intimately, if I am the diminishing person, what can I say
to myself? How should I regard myself, as long as it is possible for me to do so?
Thinking about those questions takes me back into philosophy. If I or they are
fading, who are we as diminished persons? Just what kind of entity or continuity
does a self have when such difficult changes are happening? The eager five-year-
old is replaced by the surly 15-year-old and again by the smiling 35-year-old.
These are “the same person,” and yet they are not.
Here I need the usual philosophical maneuver: “Let’s make some distinctions.”
There seem to be many kinds of identity: Am I the same person who was seen on
the security camera? That’s fairly easy to decide. When I signed the contract to buy
the apartment was I as rational then as I am now? That is harder to decide,
especially if I want to get out of the contract. Am I the same me as I was as a
teenager? That depends on your criteria; the answer has to be both yes and no. I
imagine my nephew saying “I can hardly believe that Uncle David is the same
person; he seems so changed by his illness.” Or, taking science fiction examples,
suppose my mind has been uploaded to a computer and I then, claiming to be the
dead philosopher Kolb, I demand to receive the royalties from my publications
(don’t I wish!). Am I entitled to the money? Or perhaps this: “Sorry, Kolb, the
Enterprise transporter has malfunctioned and now there are two of you. What
should we do?”
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Thinking over these and other examples I became interested in theories that saw
the self as not one continuous permanent entity but as an ongoing process tied
together by memory and habit. Such identity comes in degrees. Such flexibility
with personal identity can be found in Buddhist psychology, and also in ideas from
Locke and Hume, and is reinforced by recent neurobiology.
Relations between my past and future selves may be more like relationships
between generations of humans than between relationships between two parts of
one solid continuing entity.
Thinking about my self-identity in terms of relations between generations, I
found myself thinking about reincarnation as a clue for dealing with dementia. In
Hinduism the traditional Indian theory of reincarnation says I hav/am an underlying
self reincarnated many times until I attain liberation from the cycle of birth and
death. Early Buddhism accepts this standard Indian cosmology but the Buddha
insists that there is no underlying self. In fact, the illusion of a continuing self and
attachment to it is a principal cause of the suffering which The Buddha seeks to
heal.
Buddhist philosophers said that not only is there no self that continues in
reincarnation, but there is no self that continues day to day. Yet we do experience
continuity in our lives. Buddhists explain this by saying that no entity whatsoever, a
self or a tree or a rock, has any independent existence by itself; it emerges by and
through connections with others entities that also have no lasting independent
existence. So my different selves from reincarnation to reincarnation, or even from
day to day, are linked through their dependence on other entities and their past
history (the law of karma).
If I accept that a future self is “the same” if it has continuous memory, then I
have to say that a reincarnated future person with no memory of “my” life yet
influenced by a causal network including my past actions, is not “me.” (Of course,
folk belief provides contrary anecdotes about people retaining or obtaining
memories of earlier lives, thus imagining we all might satisfy that criterion.)
I wonder if I could apply this to dementia? What if I think of the person with
dementia not as a diminished old self, but rather as a new person who is causally
connected to past incarnations, years or months or days or hours ago. Identity
between the new and the earlier comes in degrees depending on the continuity of
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memory. This means that I as a friend or caregiver, would not see the demented
person as a tragically reduced version of someone I am still trying to hold onto.
Instead I would see them as a new person more or less continuous with prior
selves, to be treated as a new self with its own possibilities rather than
characterized only in negative terms. This could let me feel more than patience and
compassion. It would encourage me as friend or caregiver to explore the world of
the new person and discover its possibilities.
I could them say (from the outside) that then the demented person is becoming
each day (or hour) a new person who unreflectively reacts in a new and to outside
eyes shrinking world. As awareness of past and reflective awareness decrease, old
habits and buried tendencies might surface in irregular ways, the results of causal
chains from long ago. Instead of constant mourning my attitude might become one
encouraging discovery and participation.
But then I worry: would this weaken emotional connections between the
caregiver and the new persons? That would be a matter of degree just as the
separation between the new person and the earlier persons is a matter of degree.
Emotional connections, love and concern, shouldn’t depend on a metaphysically
identical self, once we accept that all personal identity is subject to constant
refiguration.
Perhaps what I just said might help the caregiver, but then comes the harder
question: what could I say to myself (from the inside) when I am the one sliding
into dementia? Could I live each day as a new person, letting go what isn’t there?
This would be living in the present moment, albeit a truncated one.
I imagine a period in which I would live dementia with a sense of decrease, a
shrinking world, a past growing unreachable, a present growing more and more
confusing. I would be aware that I could not act or remember as I once did.
Connections between my current and earlier states would be strong and self-aware
enough that I would be living a state of mourning. In that case, what could I say to
myself?
Sometimes believers in reincarnation say things like “I am sure that in an earlier
life I was a princess along the Nile”. Maybe in dealing with dementia from the
inside, I could say “I am sure that in an earlier life I was a philosopher, teaching in
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college, writing essays. I’m not that person now and my world has a new shape
that, even if it’s limited, I can explore and act within.”
I would try to live the present moment in its full concreteness with past and
present, accepting it in light of some wider view of the world. But how long would
such self-reflection last? As that larger view faded it might be better to phrase my
advice to myself in Buddhist terms: “do not be attached to the past nor to cling to
the present nor push away the future.” Give up the craving for strong identity and
continuing powers. Let the present incarnation and its possibilities be. Take them
up as best I can.
Then there would come a time when severe dementia removed my ability to
take any reflective attitude towards myself. What I am proposing to myself would
not work for that late stage dementia. But then, nothing else does, either.
A Conclusion
At the beginning of this project I said that I hoped “express something from my
life with Parkinson’s that may help others deal with living on a downward slope.” A
chronic disease amplifies aging. Does the Parkinson’s world tell us anything about
“normal” aging, that fantasy of easy decline and sudden cut-off we all wish for but
almost no one achieves. It is “normally” easier to live in denial until, perhaps, near
the end. But Parkinson’s hits you with daily opportunities to take up your situation
in the world. Parkinson’s forces us with the disease and urges everyone else to walk
self-consciously down the mountain, taking up creative possibilities in each
moment of our ever diminishing experience.
Chronic diseases like Parkinson’s stretch out decline, and then dementia
fragments Chronos, lived time. Maybe we could learn how to respect the death and
birth of times and worlds, the fragmentation of ourselves that is a birth as well from
moment to moment. Maybe we could learn a compassion that is aimed as much at
our own weakness as at the sufferings of others. In the end, with dementia, all of
this may fade for me while it continues for those who give care. That is the time for
trying to enjoy sensory and cognitive moments as they pass. Eventually even that
sense of passing moments could be taken away. For in our end as in our beginning
we depend on the care and compassion of others.
David Kolb, PD essay(s) 44
44
APPENDIX ON RESEARCH INTO CAUSES AND CURES
A high school friend of mine who worked for years at aiming strong lasers at
pellets of hydrogen fuel. My friend says he had great job security because laser
fusion is always 10 years away. That’s the way most patients with Parkinson’s feel
about research into the disease. When I was diagnosed the neurologist told me that
the next 10 years would bring exciting new developments and perhaps ways to
slow down or reverse the disease. Neurologists still say that to new patients. Those
promised improvements are always 10 years away.
While the research into Parkinson’s has not produced any results that have
translated into improved medications or treatments, it has shed more light on the
processes of the disease. For the patient, such information demands courage and
perseverance, because the disease now appears to involve the entire nervous
system, starting further down the brainstem, ravaging the dopamine cells, then
culminating, when it gets to the cerebrum, in dementia. Something else to look
forward to in another ten years… another twisting slope in my world’s lived time.
In the beginning there was no particular theory on hand to account for
Parkinson’s symptoms. The first advance was the study of brains in autopsies of
Parkinson’s patients, showing that a particular area of the brain which was
responsible for generating the neurotransmitter dopamine, was weekend or almost
destroyed as the disease progressed. At that time most of the emphasis was on the
movement related symptoms of Parkinson’s.
Lately there’s been research into the mechanisms that might cause the
dopamine producing cells to cease function. Mis-folded proteins and an
accumulation of garbage in the cells are involved, but whether as cause or effect is
unclear. Also, cells which produce dopamine have unusually long axons and
transport along axons gets cluttered or blocked. None of this has yet given
researchers a place to intervene in the process.
It took a while for research to turn toward non-motor symptoms, the loss of the
sense of smell, depression, and so on. As research turned to these, it turned out that
the dopamine system had more connections than had been originally realized, but
also that other neurotransmitters and other regions of the brain were involved.
David Kolb, PD essay(s) 45
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What is the nature of these changes and what propagates them through the
brain? Something in the environment or the bloodstream. Stem cells planted into
the brain may function for a time but in at least some cases they eventually begin to
show the degeneration typical of Parkinson. Something had gotten to them.
One increasingly influential theory focuses on mis-folded proteins which are
passed along causing other mis-folded proteins elsewhere. The protein that clumps
into what are called Lewy bodies in Parkinson’s cells is Alpha Synuclein. It has a
normal function but in its mis-folded shape it clogs cell mechanisms. This suggests
possible ways to interfere with the spread of the disease in the brain, but none of
these ideas have so far borne fruit. The most advanced at the moment is a vaccine
that would teach the body’s immune system to attack the messengers that spread
the badly folded protein to new cells.
This led to one hypothesis, increasingly influential today, that whatever is going
on in Parkinson’s disease does not in fact start with the substantial nigra but starts
lower in the brainstem or possibly with bacteria in the gut, where environment and
heredity conspire to start the process of misfiled proteins that gradually works up
the spinal cord and brain stem, to the dopamine producing cells, but not stopping
there, then rise to the cortex bring dementia. This theory has not been proven but it
does provide a unifying narrative for the many symptoms.
Research also looks for better ways to deliver L-dopa. It was found early that
dopamine by itself cannot be used; it doesn’t get into the brain and it causes
nausea. So research turned to L-dopa, a chemical which when delivered to the
brain ids turned into dopamine by the cells, if there are still some. But L-dopa
tends to get metabolized before reaching the brain. So the standard Parkinson’s pill
includes another chemical, carbidopa, which inhibits the loss of L-dopa.
So research lately has concentrated on better means of delivering these
chemicals, pills with better continuing release, inhalers, skin patches, or pumps
similar to insulin pumps, all with the aim of maintaining a constant level in the
blood stream.
Early on there were surgical attempts to alleviate Parkinson’s symptoms by
killing cells located in various places in the motor system. These sometimes worked
to reduce tremor and sometimes did not. The next advance was to turn from killing
the cells to stimulating them. Deep brain stimulation (DBS) is the most common
David Kolb, PD essay(s) 46
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surgical intervention today. Wires are inserted into very precisely defined areas in
the brain. Attached to a device like a pacemaker they can deliver precisely
modulated electrical pulses. The actual procedure is complex, requiring precise
placement one of several several spots where the electric stimulation can be
applied, and being able to very the frequency and voltage and phase of the current.
Elaborate precautions must be taken against infection and the programming takes
months to maximize the effects. In many cases this can enable patients to reduce
the amount of medication they take.
Some newer surgical or quasi-surgical techniques have been suggested
involving focused ultrasound, but these are targeting basically the same several
locations deep in the brain.
We still hope for surprising developments.
Appendix: Stages of Parkinson’s Disease
The Hoehn and Yahr stages, with the substages added by others, are as follows:
1
1.5
2
2.5
3
Unilateral
involvement only
usually with minimal
or no functional
disability
-
Bilateral or midline
involvement without
impairment of
balance
-
Bilateral disease: mild
to moderate disability
with impaired postural
reflexes; physically
independent
Unilateral
involvement only
Unilateral and axial
involvement
Bilateral involvement
without impairment of
balance
Mild bilateral disease
with recovery on pull
test
Mild to moderate
bilateral disease;
some postural
instability; physically
independent
David Kolb, PD essay(s) 47
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•
• Hoehn M., Yahr M. (1967). "Parkinsonism: onset, progression and
mortality.". Neurology 17(5): 427–42. doi:10.1212/wnl.17.5.427.
PMID!6067254.
4
5
Severely disabling
disease; still able to
walk or stand
unassisted
Confinement to bed
or wheelchair unless
aided
Severe disability; still
able to walk or stand
unassisted
Wheelchair bound or
bedridden unless
aided