Parkinson’s and Me, Part 1
Parkinson’s and Me, Part 1
In spring 1999, I was diagnosed with Parkinson’s Disease. In January that year, I’d come down with a bad case of flu. My fever was spiking. I remember lying on the couch thinking: “OMG, I’m so hot. This can’t be good for my brain.” I wondered briefly, “What happens when your fever cooks your brain.”
My best friend, down with the same flu, called me in alarm: “ We’re old, you know, we could die!” “That’s the least of my problems — I don’t care if I die.”
At the end of January, I noticed a tremor in my right hand, an odd tremor, not the small rapid shaking that happens when you’re really cold. Not the shaking hands you get when you are badly hungover or withdrawing from drugs. This was slower. For a minute, for less than a minute, I knew it was Parkinson’s, though I really wasn’t familiar with the symptoms, which, by the way, vary so much from patient to patient they call it “the designer disease.” In any case, the moment passed, leaving a trace of a memory, concealed behind a wall of denial, a wall of denial under construction.
Bent on barking up the wrong tree, I made an appointment for an evaluation at a sports medicine clinic, thinking — no, hoping — that the tremor was the result of…what.. shooting a basketball? Swinging a golf club? Looking uncomfortable, with no explanation, the doctor said he’d refer me to another doctor. I asked for an explanation — and haltingly, he suggested, “It might be MS.” I was sure he was wrong. Not that I knew anything about MS either. I have no medical experience, and whatever I happen to know about medical issues is based entirely on hearsay.
I finally decided to make an appointment with my primary care doctor. Close to retirement, he’d taken care of me for years. Many years. I was 28 when I met him — and that day in his office, I’d just turned 57. I trusted him, I loved him. He was calm and relaxed and very present. He said he’d refer me to a neurologist for a proper evaluation. Then added, “It might be Parkinson’s Disease. Taking my hands in his, we observed the tremor.
My education began then and there. He went on, “The thing about a Parkinson’s tremor is that it has a rhythm. It’s slower. They call it a “resting tremor.”
He explained how it works: When your hands are not acting, when your brain is not issuing instructions to your hands to take some action, the tremor appears. When you’re using your hands, when you’re doing something, the tremor disappears. He said he was going to refer me to a neurologist he knew to be very good, adding a few minutes later, he was sending me to her because he thought we could have a relationship.
He told me, “This is no ordinary rule-out evaluation.” I got the picture; this was the beginning of a lifelong treatment plan. I was in shock. I drove home, reviewing the scene I’d just left. The way he took my hands in his hands, the way he made a point of telling me I could have a relationship with the neurologist, I felt his empathy, and it scared me. In fact, it terrified me.
Everybody knows there’s no cure for Parkinson’s. If there’s no cure and it doesn’t kill you in a reasonably fast way, that means you have to wait around, getting sicker every day, hearing your voice fade, getting bent over, curling up like a stinkbug when it’s touched.
I wasn’t eager to begin a relationship with the neurologist. The only thing I knew about Parkinson’s was what I‘d seen on TV when Muhammed Ali made an appearance. Ali looked like his face was slowly petrifying into a. block of wood. I saw photographs occasionally, though I tried to avoid them.
I was scared. I’d received my PhD in Clinical Psychology only 13 months before, in June of 1998. After nearly 11 years in training, I felt ready to embark on a great career. I wasn’t thinking clearly, I was too busy facing disaster. Parkinson’s is famous for taking a long time to kill you. People suffering from it often die of something else, some quicker disease. I thought I was facing the most extreme condition imaginable — unable to swallow, let alone speak clearly enough to be understood. It gets worse; I’d be unable to walk or do anything athletic, and my face would turn to wood. — I’d be shuffling around like Ali, only that little half-smile left on his face, making him look like he knew something nobody else knew.
It’s one thing for Mohammed Ali to go around looking like he knows the secret to the universe — everybody knew to expect that from him. Grandiosity was his middle name. I drove myself nuts trying to imagine my life, unable to smile or laugh uproariously. The prospect seemed unbearable.
Meanwhile, completely ignoring my real daily life — I don’t remember much about it. I tried not to think about it, I became depressed. I met with a psychiatrist with a great reputation. He asked me a series of questions, trying to figure out what my dopamine and serotonin levels were. He remarked in passing that I might not really have Parkinson’s after all. Vaguely, he referred to a group of patients who, after being afflicted by the worldwide flu pandemic of 1918, had developed Parkinson’s-like symptoms. This was what I was looking for: A different diagnosis! — I left his office satisfied by the doubt — vague though it was — that’d been cast on the PD diagnosis. It was good enough for me.
I didn’t look anything up. I suspended my search for an alternative diagnosis, and set about trying to build my career as a psychologist. I could still conceal my tremor. Teaching “Child Development” to doctoral students in clinical psychology, I kept my right hand out of sight. I figured if students noticed they’d be unlikely to question me about it. That’s what I wanted from friends as well: complicity. Everyone was supposed to ignore it, pretend it wasn’t happening. For the most part, everyone went along, ignoring my irritability when questioned: “Kathy, how are you?”
I was thinking my career as a new clinician would be destroyed if I didn’t keep my illness under wraps. Working part-time in private practice, I eventually made an appointment with the neurologist I’d been referred to. Checking me out each time we met, she’d express enthusiasm upon finding minimal signs of progression — of the disease. With Parkinson’s, progression always means the patient is getting sicker — that’s the only option. It’s hardly progress. I found the reversal particularly bitter — a sharp reminder of the direction the project is heading.
The neurologist put me on the standard regime, a combination of drugs, one that’s a precursor to dopamine production and another, supposed to reduce the nausea caused by the first one. The drugs were like magic, removing the most obvious symptoms for 4 to 6 hours. Requirements were fussy. I had to take pills at the right time, in the right sequence, some with food and some without. I don’t know biochemistry, but I get the big picture. Motor activity — the basics like eating, breathing, walking, talking, urinating, defecating — are produced by dopamine motor neurons that— in Parkinson’s — are failing. The medications, temporarily, help the motor neurons function more effectively.
The downside to the standard Parkinson’s medication — it makes some people — like me — nauseous. Not quite enough to make you vomit, but enough to make you feel like you might. I found that if I sat quietly for 30 to 60 minutes, nausea faded. Until the next dose.
So I had to spend two hours waiting to eat, then waiting for the feeling to dissipate. Then I had to go through the whole ritual again! I was offended by it, as if it was a personal insult. I was angry this whole nightmare had befallen me. I had little gratitude for this drug providing hours of relief from a whole basket of unpleasant and unpredictable symptoms. Ir was hard to get used to consuming a drug that does nothing to improve your health, cumulatively or overall. After that brief interlude (they call it “off-time”), It stops working abruptly, and your symptoms recur, they’re waiting for you. If you don’t dose again, you’ll feel as bad as you did before the first round. I resented the constant reminder of my powerlessness.
Angry as I was, looking for someone to blame, I blamed myself. If you’re impaired, if you believe you can’t contribute to anyone’s welfare, including your own, you feel guilty, even though you didn’t cause your illness. We all arrive in the world, wired to cooperate — to share — with members of our group. Babies try to cheer up depressed mothers — and even before they reach five months old, they’re remarkably skilled at the job. Nobody wants to be sick, disabled, or constrained from helping when and how they can. Parkinson’s is a heavy blow, it comes out of nowhere and leaves you helpless.
POSTSCRIPT: Writing as a Clinical Psychologist
Parkinson’s is indeed a heavy blow. So are most chronic illnesses. It was difficult to write and publish this — health care professionals, aware of the tradition of avoiding self-disclosure, usually maintain something of a cool, distant, and reserved persona. That said, I’ve spent years encouraging my clients suffering from chronic illnesses to participate in groups where they will meet and talk to people afflicted with the same conditions. Sharing their experiences breaks their feelings of isolation.
Chronic illness always has psychological ramifications. Perhaps most difficult is the sense of shame that hovers over any illness or disability. “Coming out” and writing about my own illness was a struggle, and publishing was unnerving — I was breaking professional silence, in public. But our doctors — including our therapists — may also be afflicted by the same illnesses as others, and when they break professional silence feel a shared humanity.
A chronic illness that is obvious is impossible to hide. People, including our clients, politely avoid asking any questions. I’ve felt it when my silence intensified their worry and —sometimes under the surface of conscious awareness — the survivor guilt they felt.
Feeling survivor guilt towards someone with a chronic illness is normal. You feel if you reveal it, you’ll hurt the sufferer’s feelings. From the perspective of the person who’s the object of someone’s pity, she feels its presence. As a clinician, one stops and when it’s relevant and wise, we try to articulate what’s happening. It’s our job to make it as easy as possible to help our clients talk about their feelings, even when it’s hard to do. So awkwardly, with as much grace and ease as we can manage, we talk about survivor guilt as it relates to the obvious illness sitting in the room with us.
It’s a great relief to speak of Parkinson’s Disease from that subjective — that is internal and personal — experience, while at the same time, simultaneously, holding an objective perspective.
