The story of two artists with incurable neurological disease sharing fear, frustration, and friendship as they push to complete the most rewarding work of their careers.
In recent years, the brain, with its nearly 100 billion neurons that make at least 100 trillion connections, has become hot territory, science’s final frontier. And of all the brain’s chemicals, dopamine, the chemical messenger that becomes depleted in people with Parkinson’s, is the media darling, “the Kim Kardashian of neurotransmitters,” because it’s often discussed in the context of risky behavior involving sex, drugs or gambling. Dopamine stimulates thrill-seeking or addictive behaviors in the brain’s reward circuit, which controls a person’s response to natural rewards such as social interactions, food, and sex.
Dopamine also acts in four or five other circuits of the brain that profoundly affect functions essential for survival, including motivation and drive, attentiveness, learning, feelings of well-being, and movement. In people with Parkinson’s, the brain’s motor circuit is the intended target when levodopa and dopamine agonists are prescribed. Ideally, enhanced dopamine availability in Parkinson’s patients would only occur in the motor pathways, facilitating movement. But sometimes the effect is not so localized and some of the agents that are aimed at the motor system will also increase dopamine in the reward system. When this occurs, a person with Parkinson’s can experience addictive urges and decreased impulse control; a big dopamine spike in the reward circuit functions as a major motivator for them to “do that again,” whatever “that” is. There are many accounts of Parkinson’s patients taking dopamine agonists who’ve developed an addiction to gambling or impulse buying with catastrophic consequences.
Not everyone prone to experiencing dopamine spikes will develop dangerous addictions; a Parkinson’s patient might experience the spike as a drive to, for example, stay up all night painting, playing video games or obsessively cleaning their house. Karen Jaffe is especially familiar with the powerful effect dopamine can have when it wanders into the reward circuit. Her husband Marc, a comedian and humor writer, wrote a play, Side Effects May Include, that exaggerated her experience with dopamine to a hilarious degree. Performed in many U.S. cities, the play chronicles the life of a fictional married couple dealing with typical middle age issues, including a waning interest in sex. When the wife is diagnosed with Parkinson’s and begins taking the dopamine agonist Requip, the couple is thrown a curve ball: she develops an insatiable libido:
Before Parkinson’s and Requip, there were certain requirements for sex: work had to be going well, our daughter couldn’t need our attention, the house had to be clean, the temperature had to be between 74 and 84 degrees, and, I think the Democrats had to control at least one house of Congress.
Now the requisites for sex are: she has to have a job, our daughter has to be alive, the house has to be standing, the temperature needs to be between 0 and 100 degrees and the Democrats have to control at least one house of Congress.
And these things happen all the time!
The dining table!
The bathroom floor!
A friend’s dark patio during a party!
The backseat of our Prius!
The front seat of a Prius! We didn’t even know whose car it was! All those Priui look alike!
The story, which was also published in The New York Times, is funny and brave, reflecting the buoyancy with which Karen and Marc face her disease.
Another intriguing aspect of Parkinson’s disease that has been researched is the impact of dopamine depletion and subsequent dopamine augmentation on creativity. In addition to stimulating reward seeking, dopamine is known to increase novelty seeking, which can be a precursor to creativity. This doesn’t mean that more dopamine always equals more creativity. In fact, naturally high dopamine levels are found in people working in less creative fields who are inclined to have lower thought variety, stick to the task at hand, and get things done in a predictable fashion. In problem-solving work, we rely heavily on the dorsal lateral prefrontal cortex (DLPFC), the part of the brain responsible for working memory, reasoning, impulse control and executive function. Creative work involves the default network, the brain region that’s active when we’re not focused on a specific task and our mind is wandering, generating spontaneous thought, novelty, and variety. As dopamine goes up, it enhances function in the DLPFC, but it throttles down activity in our default network. (Interestingly, brain MRIs done on jazz musicians have revealed that when they are improvising, their DLPFCs are deactivated.) Conversely, very creative people with low dopamine experience impaired functioning in the DLPFC; they have a hard time deactivating their default network in order to get from point A to point B and finish projects. At the extreme end of the low dopamine spectrum are those whose thoughts are so relentlessly spontaneous and creative that they become chaotic, as in the case of schizophrenia.
Creativity, then, requires a well-balanced brain chemistry — low enough dopamine that the default network can create novelty and high enough that the DLPFC can manage the complexity of creative thoughts so that a person can follow through on their ideas. To turn up productive creativity, theoretically, people who start with a naturally high dopamine state would need to lower their dopamine and those who start with a low dopamine state — people with bipolar disorder, ADHD, schizophrenia and Parkinson’s, for example — would need to raise their dopamine.
There’s no easy way to measure a person’s dopamine level, so people who wish to be more creative or better problem solvers aren’t running to their doctors asking to have their dopamine levels tweaked! But studies of those who are treated with dopamine have found that it can often boost creativity and even artistic skill. In some cases, Parkinson’s patients have begun to excel at an entirely new creative pursuit. One woman, for example, despite never having written before, became an award-winning poet. In another case, a graphic designer treated for PD made a sudden switch to painting, discovering that the change from tightly controlled, contained work to broad sweeps of the paintbrush not only unleashed a new aspect of his artistic sensibility but also temporarily relieved him of his rigidity, freezing and tremor.
In other cases, artists treated with dopamine have worked obsessively at producing work. A 2014 piece in the Atlantic Monthly about creativity and Parkinson’s described the experience of a 41-year-old woman with PD who, after starting levodopa treatment, developed what her doctors called an addiction to painting:
Her home became a gathering place for artists, and she began compulsively buying painting materials. She described the spiral earlier this year in a medical journal: “I started painting from morning till night, and often all through the night until morning. I used countless numbers of brushes at a time. I used knives, forks, sponges … I would gouge open tubes of paint–it was everywhere. But I was still in control at that point. Then, I started painting on the walls, the furniture, even the washing machine. I would paint any surface I came across. I also had my ‘expression wall’ and I could not stop myself from painting and repainting [it] every night in a trance-like state. My partner could no longer bear it. People close to me realized that I crossed some kind of line into the pathological, and, at their instigation, I was hospitalized. Today, my doctors have succeeded in getting my medication under control, and my creativity has become more tranquil and structured.”
A question to my Parkinson’s Facebook group about whether they’d experienced a spike in creativity since being diagnosed, yielded many posts naming a wide variety of artistic pursuits, from publishing a first book to repurposing furniture. One member posted that she’d taken on all kinds of creative endeavors: putting together marketing and advertising campaigns and materials for several nonprofits, designing and constructing costumes for several plays, teaching classes on closet makeovers, consulting on interior design, creating numerous photo books for special occasions and writing poetry. Joe Narciso, an actor in our group who appeared in Law and Order, among other TV shows and films, shared his dangerous ride on dopamine medication:
I was (am) an actor. When I started taking PD meds, I also started writing. I wrote TV shows and actually sold 4. When I started taking Mirapex I stopped sleeping, gained 50 pounds and almost ruined my marriage and family I was so compulsive. About everything. EVERYthing. Added levodopa and Comtan and my creativity was in over drive. Still no sleep. I mean, maybe 2 hours a night for 8 years, despite trying every sleeping pill and sleep aid out there. My health was a wreck. Falling down stairs. Breathing issues. Apnea. Choking. Weight. Then I had DBS (deep brain stimulation surgery). Came off meds completely. Lost 40 pounds. No apnea and breathing fine. No choking. No falling. Sleep like a rock EVERY night. Health is way better. Creativity is comparatively non-existent. Obviously I’ll take health. But I miss being so creative.
Is new creative drive related to dopamine dysregulation occurring in people with PD or by dopamine therapy itself? It’s not clear to scientists yet. Perhaps the death of dopamine neurotransmitters in PD patients leaves them in the low dopamine state typical of highly creative people. It could be that a spike in dopamine reduces their inhibition, making them more inclined to try new things, or makes them better able to follow through on creative ideas that have been percolating but haven’t yet been brought to light.
I’ve wondered whether my career shift from architecture to writing might have been influenced by the change of dopamine level in my brain. A very creative field, architecture nonetheless relies heavily on that logical, puzzle–solving area of the brain, the DLPFC. I began to write in earnest in my forties during the year when my health was failing. Because I didn’t have the energy to do much more than take care of our children, I stopped going to work at the architecture practice I shared with my husband. There was no question that my DLPFC, and therefore my executive function, were compromised by my illness, but I needed a creative outlet. During those first years of writing, I didn’t do the important planning or plotting that goes into a good work of fiction, both because I didn’t know what that was yet and because I didn’t have the focus. Instead, I spent much of my day at the computer putting words to the images and ideas that floated up from my brain’s default network. Sometimes writing felt so fluid and full of novelty that it was like being in a waking dream state. Years later, my DLPFC in better shape, I was able to do the hard work of structuring my parade of impressionistic paragraphs into a novel.
I still experience what I now think of as “default network moments.” Like most artists, when my hands are busy holding the dog leash, the garden hose, the toothbrush, some of my best ideas—the perfect adjective, a more lively turn of phrase, a metaphor, or plot point that has eluded me while sitting at my laptop—will surface.
Dopamine spikes clearly lit up Karen’s libido but we can only speculate that they’ve been partly responsible for her and Hadley’s almost superhuman productivity. As for me, since learning about the mysteries of multifaceted dopamine, it’s hard not to visualize the chemicals in my brain working their magic, even as they struggle against the tide to keep my brain alive.