Big Stories

My Mother, Parkinson’s, And Our Struggle To Understand Disease

The doctors prescribe pills that cause uncontrolled muscle movements, mania, and hallucinations. Our family clings to storytelling in order to survive.

Illustration by Ilana Denis Bauer for BuzzFeed

My father is always listening. He has baby monitors set up in every room, so that he can hear my mother when she needs help. Help to go to the bathroom, to dispense her medicine, to massage her spasming muscles, to bring her something to drink, to arrange her pillows, to turn the heating pads off and on.

I imagine my parents when my sister and I were babies: They listen, sleep-deprived, from the other bedroom. They know that eventually, we will grow up and take care of ourselves. Parkinson’s also has stages of development. Each year my mother’s body is more dependent on others for care.

I am home for Christmas having a beer with my father, a retired forester. My mother is sleeping. It is best not to disturb her rest. Dad asks about my new job. I tell him that I often fall asleep answering work emails from my bed. He tells me that he used to go to sleep listening for forest fires on radio headphones, so as not to wake my mother.

Now my mother calls through the baby monitor and he goes to check on her. I sit on the stone fireplace in the living room and leaf through a binder of monthly reports written by district foresters dating back to the 1950s, a collection of narratives that my father kept over the years. These days, my father keeps meticulous records on my mother, which he emails to her doctors at the end of the day. They are conducting a scientific experiment with multiple variables. Sometimes my father forwards the reports to my sister and me. They are detailed and thorough, but they are more than objective observations; they are a narrative about my mother.

People with Parkinson’s stop producing dopamine, a necessary neurotransmitter that, among other things, contributes to successful physical movement. My mother takes medication, which is converted into dopamine in the brain, but like most drugs, you have to take more and more to achieve the same effectiveness over time, and the side effects can include uncontrolled muscle movements, mania, and hallucinations. Most people associate the uncontrolled muscle movements of Parkinson’s patients with the disease, but this is actually a side effect of their medication. The effect is called dyskinesia. Without the medication, she might not be able to move at all.

Illustration by Ilana Denis Bauer for BuzzFeed

Two years ago, when she was 58, my mother had deep brain stimulation (DBS); the doctors drilled two holes into her skull and implanted electronic leads. Before the surgery, I was curious: How would the doctors know to stop drilling before they hit my mother’s brain? My father said they would hear a popping sound when the drill got to the other side of the skull. The surgery left two knobs on top of my mother’s head like antlers. The electronic leads run from her brain, down the back of her neck, under her skin to a battery pack in her chest.

Parkinson’s manifests differently from person to person, but even within my mother, I have a hard time keeping up. Before Christmas, I stood in front of a display of sweaters, trying to decide if my mother would wear a small or an extra-large. The constantly changing variables of electricity and medication make her weight fluctuate.

For some time, before the DBS, my mother was on so much medication that the result was mania. She wanted to blast music, she wanted to dance, she wanted to talk, she wanted to experience everything, and her body was constantly moving. Visiting during this phase involved a lot of clean-up. Once, I left her alone in the living room for a few minutes, and when I came back, she was sitting on the floor, rocking back and forth with sheet music spread all around her. “We’ll pick it up later,” she said as she moved onto another activity. The only way to get her to stop talking and moving long enough to eat was to read to her. During this phase, my father read aloud during dinner.

Now my mother can barely move. She is in bed most of the day. Even going to the bathroom can be difficult. Not just getting into the room, but the actual process.

She is painfully aware of her condition and tries to keep her mind active, but it is difficult when you cannot leave your bed. Earlier this year, my sister and I took turns reading to her over Skype. I felt guilty interacting with my mother’s mind, leaving the dirty work of the body to my father.

Illustration by Ilana Denis Bauer for BuzzFeed

I leave my father’s binder on the fireplace mantel and walk back to my mother’s bedroom. She is lying in bed underneath her hands-free reading contraption. She looks like a mechanic lying underneath a car. She looks like she’s fixing something. She is getting tired. It is too difficult to read. She asks me to take over.

I read aloud from the book: a memoir about lesbian sheep farmers. This is her second time reading it.

“Just a little quieter,” she says. The same goes for touch: She feels everything more than she should. A massage consists of running your fingers gently down her back. I feel like I’m tickling her.

My mother’s doctors say she is the most sensitive patient they have ever had. They have had a difficult time turning up her programming, because her body is much more sensitive than their other patients’. I can’t help but wonder if this has anything to do with our extremely sensitive emotional constitution — a hyper awareness running through my mother, my sister, and me. My sister, Rachel, almost died in a fire when she was 4. She was having a tea party with the neighbor next door and the tea was gasoline. I imagine the spare gas can in the garage resembled a teapot. My parents heard an explosion and thought I had fallen out of my crib. Rachel still thinks about my mother’s face looking down at her, bathing her later that week in the sink, like if she had died, my mother would have died too. These are the kinds of things we turn over in our minds.

Rachel comes home while we are reading. She says hello and asks if it is all right if she plays the piano. My mother thinks this will be fine. Rachel is a pianist; she is practicing for doctoral auditions. She does not play long before my mother says the music is too loud.

People often inquire if my sister, a musician, and I, a writer, come from artists. I usually just say no, but the longer answer is maybe. We come from people who listen and people who believe in stories, because stories are the only thing getting them from one moment to the next.

When I was 10 — long before my mother was diagnosed, and she was still allowed to drive — we got stuck behind an accident on the way home from school. My mother got out of the car to survey the scene. There was someone trapped inside a car. My mother was going to call for help, and she asked if I would feel comfortable talking to the man in the car while he waited. “But what would I say?” I asked her. “Anything,” she said. I told my mother that I was too scared and that I’d rather wait in the car. I don’t know what came of the man in the accident, but if I could change one thing that I have done in my life, I would have told him a story.

But it is Christmas and I am 29, cooking a pot of soup in my parents’ kitchen. I hear my mother’s voice calling on the baby monitor. Sometimes I think of my mother’s mind and my mother’s body as two different people. I forget, momentarily, that she has Parkinson’s.

I go to her bedroom, where she tells me that she is in pain and that she is not building toward anything. “As humans we need to build toward things,” she says. I think about what makes me happy: writing stories, working toward goals, learning, cultivating relationships. I think about the progressive nature of these endeavors. I think that my mother is right. I wonder how many weeks it’s been since she has been outside or days since she has showered. She has been hiding lethal doses of pills around the house. She’s on that ledge of not caring about building, but I will not truly be worried until she stops asking for stories.

My mother is underneath the covers and I am reading to her from the lesbian sheep-farming book to calm her down, but her medicine is wearing off and she starts experiencing “going off dyskinesia.” She throws the covers off of her body. Her arms cut through the air with fierce, uncontrolled movements. There is nothing to hold onto.

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