Share Your Story
by Leonore Gordon
As a 55-year old female poet and retired family therapist, with 12-plus years of living with Parkinson’s under my belt, I aim to take on PDF’s challenge for Parkinson’s Awareness Month, i.e. “Which myth about Parkinson’s do you most want to shatter?” As a Jewish therapist, I’ll answer a question with a question, and ask, “How many ‘selves’ really exist inside of your neighbor with early-onset, advanced Parkinson’s?” (This is not to imply that we who live with Parkinson’s are like “Sybil” with diagnosable pathology!) No, I’m referring to the unpredictable and fluctuating states our bodies morph in and out of throughout each day because of the imperfect medications most of us need to take every 2-4 hours in order to get up out of a chair and walk. These are medications on which we are dependent to treat our disease until a cure is found, but their consistent and hourly effectiveness is far from a sure thing.
You are certain to know someone living with Parkinson’s who is not ‘elderly.’ She or he may share your apartment building, or stand in line with you at your local greenmarket or bank. Perhaps she is picking up her child or grandchild in the schoolyard. She may be 40, 55, 70, or 80, and while you may at times see this person walking very slowly and cautiously, at other times, he or she may appear inexplicably youthful, spry and energetic. When you see her looking perky, you may exclaim, (more for your own need than hers) “Wow! You’ve gotten so much better!” Unfortunately, you’ll be wrong, and worse, you’re unintentionally reminding her (or him) that unlike having a broken leg, there is no cure in sight for Parkinson’s.
Like the multiple crazy mirrors distorting one’s reflection in a penny arcade, one stretching us long and skinny, and another squashing us like Humpty-Dumpty, the uneven success of our Parkinson’s medications likewise alters our physical and emotional selves all day long, in equivalently grotesque extremes of reality. My hope here is to crack open the illusion that the identity of your neighbor with Parkinson’s is, throughout the day, a one-frame fixed experience; i.e., when s/he is walking so ‘apparently’ easily, this means that, therefore s/he is “doing much better.” Furthermore, some of us have tremors, and others don‘t, (like me, or my late father, who also had the disease). And those with tremors don’t have them all the time, although the absence of tremor doesn’t mean they’ve “gotten better.” Parkinson’s presents differently in every single person it afflicts. The real truth about this disease is complex, unique to every individual, and far more difficult to digest.”
For those more intimate with us; friends, co-workers or family members who spend many hours in our presence, our dramatic ‘shape-shifts’ between our many ‘selves’ can feel bewildering and even horrifying, stunning them into mute (and rarely expressed) grief. As I stated above, the mercurial moods of our various medications throughout the day, can seemingly, in the mere flicker of an eye, hurtle us back and forth from one life-stage to another, transforming any one of us from an active person in her or his fifties (or eighties), into a shuffling ninety-eight year old. And, after five years or so of taking our gold-standard “Levadopa” pills, most of us reach the top levels of the drug that our bodies can tolerate, and our synthetic dopamine pills begin to either work extremely well, too well, or not at all, with such variations occurring over the course of each day. By “working too well,” I’m referring to our ‘dyskinesias’, (involuntary movements),which can make a foot, hand, leg, or even the trunk of one’s body feel possessed by a cruel puppeteer; one who jerks our body-part hither and yon, or whichever way it sees fit.
We call this experience of being able to move when the med’s kick in, as being “On,” and when our med’s fail, we say we are “Off.” Trouble is, the “On’s” are not all good, especially the exhausting, exasperating dyskinetic ones. During the good “On’s,” we can almost pretend we don’t have Parkinson’s, and walk and speak normally. The bad “On’s,” though, can feel worse than our worst “Off’s” as we walk and gesture spastically, trip, knock over beverages, and fling pens through the air. Sometimes all of this can be really funny if we’re with one another; more often, however, we’d prefer to never, ever again feel this demoralizing theft of control over our own bodies.
Our worst “Off’s,” on the other hand, can be “soul-shattering,” as the former governor of the state of Washington, Booth Gardner, once described them. In what can seem like a split second, we feel robbed of all that we had possessed just moments before; i.e. our “true selves” – full of creative ideas and exchanging passionate opinions with friends - all while doing things as simple, and taken-for-granted as turning our heads towards the person sitting beside us. And then, “Poof!” The med’s fail, and it’s like being tagged by an invisible assailant in an unasked for, one-sided game of ‘Freeze-Tag,” rendering us literally incapable of looking at a companion seated beside us.
My own sudden “Off’s” can feel like a Kafka-esque metamorphosis, causing my previously animated self to randomly transform into its polar opposite. It‘s like molasses suddenly gums up my inner gears, slowing me to near immobility. My face muscles may feel ‘frozen,’ as if a zombie mask has been placed over my face, and my voice may slow, lowering dramatically in volume. My hands may suddenly be barely able to move, and if I try to stand up and walk, I may not be able to at all. I’ll need help because my muscles will have gone on strike, refusing my commands to lift me out of the chair, or even to to take a step forward. And, once up, I may shuffle very, very slowly like an old woman. I cannot overstate how much I hate this all-too-frequent body-state. It is simply not my image of my real 55-year old-self.
In another very common variation of Parkinsonian “Off’s,” I may be skittering forward on my toes, or lurching forward, (because my balance has inexplicably decided to take a hike.) Such off-balance lurching can be mistaken in public for inebriation, a common misperception many of my PD-peers have shared stories about. Additionally, to our own, and to our family members’ dismay, our “Off’s” can also alter our moods. Dopamine governs our executive functions, and when reserves are depleted, we can be like kids with ADD; irritable, impulsive, and overwhelmed by such previously simple tasks as transitions between activities, packing, or decision-making about meal preparation or menu choices. Our basic intelligence and creativity is not impaired by our disease, but our stability of mood, energy supply, and temperament surely is.
There’s no consistent rhyme or reason for when or why our med’s so suddenly shut us off, along with access to our reserves of dopamine, synthetic or otherwise. The room may have gotten too warm, or cold, or someone said something that activated a stress response in our bodies, or perhaps we ate protein too close to our dose of pills, or maybe we’re developing a cold, or infection. Left untreated, a common GI infection, H-Pylori,(a peptic ulcer) can totally disable the absorption of our meds, leaving us essentially helpless and unable to move. (This just happened again to me for the second time in three years.) Why? Who knows? We with PD spend a lot of time researching these things ourselves, and then educating those of our more humble physicians and specialists who respect our intelligence. Bottom line? It’s not fair, and these up’s and down’s are like being knocked out of a good dream into a nightmare, many times each day.
Have I succeeded in shattering your myth that your neighbor with Parkinson’s is randomly “getting better” when you see one of us so mobile at a given time? Hopefully this article has not offended or hurt you, because we both know your intentions are kind and good. I merely wanted to help you better understand that when I am doing so well, it’s likely because my pills are working for a welcome but transitory moment. So next time our paths cross, you may opt to greet me with either, “Hi, there! Glad to see you’re having a good moment!” or, if you witness me “off,” you might shake your head in sympathy and say, “Tough, huh? Can I help with anything?”
I guarantee; you’re not likely to go wrong with that.
Leonore Gordon, LCSW (firstname.lastname@example.org) lives in Brooklyn. She is a licensed, (retired) family therapist; a poet; a poetry educator; a writer; a Congressional Coordinator for Parkinson Action Network; and a community organizer. She has an 18-year old son who is away at school, and she is trying to live independently (with her 11-year old beagle), after her marriage of 26 years ended in 2010. She lost her father to Parkinson’s in 2000; he lived with the disease for 23 years. She keeps physically and mentally healthy and active through friendships, activism, and membership in the Brooklyn Parkinson’s Group, which, along with partnerships with the Mark Morris Dance Group, LIU and the Bed Stuy Y, provides dance, exercise and singing classes free to people with Parkinson’s. Her blog, http://alphapdny.blogspot.com, offers more information about Parkinson’s, and NY City resources recommended for those with Parkinson’s who live in NYC. Her Parkinson’s Unity Walk team, ‘Brooklyn Parkinson’s Group’ raised over 8,000.00 in the annual Unity Walk in Central Park on April 16th, (www.Unitywalk.org) to advance research to cure Parkinson’s.Posted by PDF Admin on May 27, 2011