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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 [log in to unmask]