Thursday, May 5, 2016

My Articles: Shattering the Myth of "Wow! She's Gotten So Much Better!"

  • Leonore Gordon, LCSW; (718) 783 1986; Please do not duplicate without permission
    Shattering the Myth of "Wow! She's Gotten So Much Better!" with “Your Neighbor with Parkinson’s is Feeling Better For the Moment, Thank You, but Check Back in an Hour....”

           As a 58-year old female poet and retired family therapist, with 15-plus years of living with Parkinson’s under my belt, I aim to take on PDF’s challenge for Parkinson’s Awareness Month, ie. “Which myth about Parkinson’s would you most want to shatter?” As a Jewish therapist, I’ll answer a question with a question, and ask, “How many ‘selves’ really exist on a daily basis 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!)  

    I’m referring to the unpredictable and fluctuating states our Parkinson’s bodies morph in and out of throughout each day because of the imperfect medications most of us in later-stage PD 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 ‘Young-Onset 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 35, 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’d be 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 constant throughout the day, like a single-frame fixed experience; ie. that when s/he is walking so ‘apparently’ easily, this means that, therefore s/he is overall “doing much better.”

         Let’s begin by with the classic image most have of those with Parkinson’s, one of a person with a shaking hand; in reality, many of us have tremors, but 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 a 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 seemingly shuffling ninety-eight year old.

    Many of our movements are not tremors but ‘dyskinesias’, (involuntary movements), and are a side-effect of medications. 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, 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.

    Many of us call the 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 can feel robbed of all that we had possessed just moments before; ie. our “true selves”- the part of us full of creative ideas and exchanging passionate opinions with friends. This transformation can occur while we are attempting taken-for-granted motions as simple as turning our heads towards the person sitting beside us, something we could accomplish moments before. And then, “Poof!” Our med’s fail, and it’s like we’ve been 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 and fluidly moving self to randomly transform into its polar opposite. It feels 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. What I badly want to express becomes a near-whisper, and my lips and mouth feel somehow numb. My hands may suddenly be barely able to move, and if I try to stand up and walk to get more of the chips I ate minutes ago from a nearby coffee table, I may not be able to do so at all. I’ll need help because my muscles will have gone on strike, refusing my commands to lift me out of the chair, never mind taking an initial step forward. (Singing a familiar upbeat tune with us can often re-circuit our brains, tricking them into allowing movement.)
    If I am helped up to my feet, I may shuffle very, very slowly, fearing a fall, as my balance has suddenly left town. Or I may lurch or skitter forward, appearing inebriated. (Such off-balance lurching forward can be mistaken in public for inebriation, a common misperception many of my PD-peers have shared stories about.) I cannot overstate how much I hate this all-too-frequent “frozen” body-state. It is simply not my image of my real mid-fifties active self. It’s so difficult to remember when “off” that when my pills do kick in, Poof! my real active self will truly return.

    Our “Off’s” can also alter our moods, to our own, and to our family members’ dismay. Dopamine governs our executive functions, and when reserves are depleted, we can be like kids with ADD; irritable, impulsive, and seemingly overwhelmed by such tasks we used to have no problems with: transitions between activities, packing, or decision-making about meal preparation or menu choices. Early PD symptoms can result in depression or anxiety, as well, both treatable with anti-depressants when recognized as such. What’s vital to understand is that our basic intelligence and creativity are not impaired by our disease, but our stability of mood, emotional resilience energy supply, and temperament surely are impacted.

    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. Maybe we’re developing a cold, or infection, a common cause of our PD med’s not working well. Left untreated, a common GI infection, H-Pylori,(a peptic ulcer) can totally disable the absorption of our med’s, 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;
    Leonore Gordon 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://, 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’ will be walking in the annual Unity Walk in Central Park on April 16th, and is hoping to raise $10,000.00 for the Unity Walk, ( to advance research to cure Parkinson’s.

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