THE CASE OF THE FROZEN ADDICTS
 
 
 
The title comes from an article on a group of heroin addicts who
 
developed Parkinson's Disease overnight as a result of taking a
 
"designer drug" containing MPTP which destroyed the part of the brain
 
(the substantia nigra) that manufactures dopamine, the neurotransmitter
 
that is lacking in Parkinson's Disease patients.  Although they were all
 
young and otherwise healthy, they had suddenly become "frozen', unable
 
to move or talk, their faces expressionless as masks. (from an article
 
by Jill S. Mooney who reviewed The Case of the Frozen Addicts by Dr. J.
 
William Langston in `SF Chronicle?')
 
 
 
It suddenly struck me that Parkinsonians in general could be described
 
as "frozen addicts".  Doesn't this freezing, which Webster's defines as
 
`becoming fixed or motionless; becoming coldly formal in manner,
 
incapable of acting or speaking' aptly describe most of us not only
 
literally but metaphorically?  Aren't we also chained to our drugs which
 
become less and less effective in preserving the amount of "on" time
 
when we can function nearly normally?
 
 
 
I am becoming increasingly aware of the chill enveloping my life  like a
 
mysterious fog, cooling what I thought was a warm, vivacious
 
personality.  A friend who has known me for a number of years as we
 
drifted in and out of each other's lives--she taught my daughter in
 
kindergarten, and I later  taught her daughter in high school--told me
 
the other day my  facial features have altered dramatically.  It's
 
ironic that I say `dramatically'  because what she meant was that I had
 
adopted this `masklike appearance' they mention so glibly in describing
 
the typical Parkinsonian symptoms.  People seem to be afflicted with the
 
worst handicaps that can individually befall them--Beethoven becomes
 
deaf, Betty Cuthbert (?), the greatest female runner develops MS., Nat
 
King Cole gets throat cancer.  Of course, I'm not on the same plane as
 
these people, but fate can still have its cruel little joke;  I love
 
amateur acting so I develop a disease that manifests itself with a
 
masklike, expressionless face and soft, hoarse speech and a rigid,
 
unresponsive body.
 
 
 
When I was first diagnosed with PD, my neurologist asked me what I knew
 
about the disease, and I flippantly answered  "Katherine Hepburn, my
 
favourite actress has it."  If it weren't for all the cheap mimics
 
sending up her shaking mannerisms and quivering voice, I don't think I
 
ever would have known.  After the diagnosis, I read her autobiography
 
(title?) cover to cover but found not one single, solitary mention of
 
her having Parkinson's Disease and how it may have affected her life.
 
Is this the reason that despite having affairs with three outstanding
 
men she never married, never had any children and now lives alone in her
 
New York flat?  Though the strong, independent demeanor and aloof
 
aristocratic manner was so arresting in her female movie roles, did the
 
`freezing' inherent in the disease cause her to appear aloof and
 
withdrawn in everyday life situations?
 
 
 
Increasingly, I find that I alternate between frantic efforts to do ten
 
things at once, set impossible deadlines and demands on myself and times
 
where I just give up and guiltily withdraw from activities, paralyzed by
 
fatigue and indecision exacerbated by the stress imposed on myself.  My
 
impatience with people that I hear about who are in denial of their
 
disease is rather hypocritical as I think my sometimes  frenetic
 
existence is an indication of my own denial.  If it looks like I'm all
 
right to other people, I might pretend that to myself as well, but the
 
PD creeps in like the Mr. Hyde who invades Dr. Jekyl's life more and
 
more.  There are all the signs of its existence, which are mostly
 
invisible to others at work such as my insomnia where I lay awake
 
experiencing hours of my mind racing while my limbs feel heavier and
 
stiffer as if I were wearing  plaster casts. These waking hours are
 
punctuated by frequent lumbering trips to the ensuite toilet. It is with
 
great effort that I reach for the vital medication, the four morning
 
tablets that will make it possible to move freely, despite the
 
inevitable nausea  they will bring. Within a few minutes of heaving the
 
body out of bed in the morning, my feet have taken up the ritual of toe
 
curling, getting tighter and tighter until the cramping pain becomes
 
unbearable; the mind  used to be obeyed but is now fairly ineffectual in
 
prodding the recalcitrant body into life. I might even have an acute
 
shoulder spasm where my shoulder jerks up and backwards  threatening to
 
dislocate itself if I'm really having a bad morning.  Thoughts flash of
 
the Peter Sellers' movie character Dr. Strangelove whose hand took on  a
 
life of its own and would randomly attack its owner.  Any attempt at
 
hurrying is disastrous; this will only bring about the "walking under
 
water" or "deep space jive".  Why can't I get anywhere on time any
 
more?!
 
 
 
You gain a `junkie's'  respect for these little pills because you are
 
aware of how you body will punish you if don't take them regularly and
 
on time. Making a spectacle of yourself by your immobility and ever-
 
increasing tremors in an `off' period is a real anathema to the `Parkie'
 
(an endearing term for a fellow Parkinson's sufferer), who has now taken
 
on the Parkinson's Personality -- withdrawn, quiet and unobtrusive.
 
Just see what happens to you in the middle of Target Store if you've
 
forgotten your regular fix.   I cringe as I think of myself, failing to
 
take those little pills on a recent shopping trip, then searching in
 
vain for a seat as the toe curling was making it nearly impossible to
 
walk, doing a contorted flatfoot and barely making it to the counter,
 
only to discover that the cashier was one of my senior students who has
 
probably been watching me making a spectacle of myself.  Never mind
 
trying to tell her I have Parkinson's as the usual reaction from people
 
is,  "Oh, God, I never would have dreamed...How awful for
 
you!...(pregnant pause) What is Parkinson's Disease anyway?"  The last
 
thing you want to do is explain the workings of the substantia nigra to
 
some spotty 17 year old in the middle of a department store.  You feel
 
conspicuous enough as you try to unglue your fingers enough to handle
 
the paper, coins and receipt well enough to actually get them into your
 
wallet without dropping bills and cascading change all over the place
 
while you feel the eyes of  impatient shoppers in the queue behind you
 
drilling holes in your back.  If you were an old lady, they'd understand
 
your fumbling, but looking at someone my age --48 years-- they just
 
think I'm deliberately being `clutzy' in an attempt to slow them up, a
 
sort of iceberg to their fast-moving ship.
 
 
 
Dealing with the physical side of  Parkinson's is for me not the
 
scariest part; for me it is the rather vaguely alluded problems with the
 
cognitive, emotive dysfunctions accompanying Parkinson's.  These
 
problems are rather the most insidious, and it's not always clear if the
 
mental confusion and short-term memory loss are the result of the
 
disease, the medication or simply aging.  As an educator, the mental
 
gaps become so much more accentuated when right in the middle of
 
conducting a class lecture or discussion, my mind goes blank and I
 
cannot think of the right word for the simplest object or I suddenly
 
feel psychically removed from my body watching this pathetic creature
 
trying to make sense out of the spaghettied collection of thoughts and
 
stimulii.  Even now in the calm of my study, I find I'm forced to make
 
up words like `spaghettied' to communicate my Parkie's perception of the
 
world around.  It frightens me when at times, if I'm under some stress,
 
I  am unable to remember my phone number or my last name. (though it has
 
been changed twice through marriage).  Particularly embarrassing is
 
calling my husband of 9 years by my first husband's name!
 
 
 
However, I have also experienced with the onset of this disease a
 
strange lucidity and sensitivity that I didn't have before and have
 
actually started writing, editing the school magazine, writing the
 
Parkinson's Association Newsletter and now this.  Also, I have gained a
 
new awareness of my body whereas I used to treat it offhandedly like my
 
car--if nothing major happens, just take it all for granted.  Now, I
 
listen to all the creaks and rattles of my protoplasmic vehicle, respect
 
it,  become conscious of what I eat and bully it into doing regular
 
exercise, all the while fighting the threatening  encroachment of the
 
monstrous  Deep Freeze.
 
Celia Jones
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