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.
“Parkie:” consonants give this diminutive a derogatory bite, but it’s the name generally accepted by those of us with PD. The first time I heard someone in our Parkinson’s Facebook group call herself a “Parkie,” I cracked up. A few weeks later, because my arms don’t swing when I’m walking unmedicated — a classic PD characteristic — I laughed even harder when a fellow Parkie referred to people without Parkinson’s as “arm swingers.”
I’ve felt buoyed, belonging to a club in which laughing at our serious disease is allowed, encouraged, even prescriptive. One of the reasons we like to make fun of ourselves might be that PD is a goofy disease in some ways. By this, I mean I feel goofy in my body much of the time, like when my right leg drags and then, as my foot comes reluctantly forward, it does a little fishtail number, as if it’s become unhinged from my ankle. A plain old limp isn’t funny, but a body part with a mind of its own attracts attention. Beverly Ribaudo, who maintains the website Parkisnonshumor.com, writes in her blog: “Parkinson’s will make you walk funny, talk funny, write funny, think funny and make funny faces, so you might as well have fun with it and laugh.” In 2013, one of our country’s best comedic actors, Michael J. Fox, twenty years into his disease, appeared in his own sitcom to make people laugh with him about the craziness that is life with Parkinson’s. He inspired the rest of us not only to find the humor in our plight, but also to focus on who we still can be despite our disabilities.
Within weeks of my diagnosis, an old friend emailed me a link to a rap written and performed by Sharon Kha, a former vice president of the University of Arizona who has PD. Ms. Kha has regularly performed her raps about Parkinson’s:
Yo! Homies! Listen up!
My name is Sharon Kha and they all knew me
I used to be the spokesman for the University.
You know you have a problem when your writing gets small
And you have a little tremor and a tendency to fall,
And your posture is rigid and your pace is slow,
And your irritated colleagues say, “Come ON, let’s go”
…Well our hands are shaky and our speech is slow
And we have hallucinations and our feet won’t go
But if we can laugh at ourselves without much fuss
We may have Parkinson’s: It’ll never have us…
Another reason I think many, especially younger, people with Parkinson’s have developed a sense of humor about our illness is because typically, PD is indolent; we are probably going to be living with it for many years. This means we have a lot of time both to be fearful of what’s to come, and to find ways to cope with that fear. Peter Dunlap-Shohl, a former editorial cartoonist for the Anchorage Daily News who was diagnosed with Parkinson’s at age forty-three, is the best example I know of someone who’s been able to make people laugh even when touching on the darkest aspects of having a degenerative disease. After years of caricaturing world leaders, politicians and bureaucrats, Peter turned his laser-sharp satire on himself, chronicling with cartoons and illustrations his adventures with PD in his brilliant graphic novel, My Degeneration. In 2013, he addressed a Parkinson’s convention with these remarks:
…humor can decrease the power that something or someone has over you. This is why Syrian authorities kidnapped political cartoonist Ali Ferzat and broke his hands. It’s why the caricaturist Daumier was thrown in jail. Twice. Why does this undermining of power work? Because much of the power any force has is the power we give it through our fear. Humor can disarm fear thoroughly and permanently.
Hadley and I always spent a lot of time on the phone laughing about our Parkinson’s. I appreciated how our joking took the edge off the anxiety and loneliness that comes with having a progressive disease. In the late fall of 2011 though, she told me she’d fallen a couple of times, laughing as she explained, “It’s the weirdest thing — if someone touches me from behind, I keel right over!” I laughed too, because I didn’t want to reveal my alarm. But after our call, I was distracted with worry. I knew from our Facebook group that falling was often part of having PD, but I felt certain that it usually came later in the disease.
In January and February, Hadley managed to work at her usual record-setting pace to complete twenty-three paintings for a show in Portland, Oregon that would open in March. In late February, she wrote to me that she felt she was exiting the “Parkinson’s honeymoon phase,” an expression used by the PD community that refers to the early years, when symptoms are typically mild. Hadley had been exhausted for years, but now she was feeling the fatigue in all of her muscles — when she walked, ate, spoke. Every movement felt slow. Her hands were cramping when she held a paintbrush. The miracle of Mirapex had worn off and she wondered why she was feeling as bad as she had been before she began taking it. Still, she insisted she felt optimistic that she would get some relief when she next saw her movement disorders specialist, Dr. Youngman. After all, there were still PD medications she hadn’t tried yet, like the gold standard, levodopa. Following our Facebook group, I knew all of us were experiencing our individual Parkinson’s journeys, but this didn’t stop me from imagining worst case scenarios — in Hadley’s case, more serious neurological diseases that can start with Parkinson’s symptoms.
By March, Hadley had finished the paintings for her show, but her energy was seriously faltering. She’d caught several viruses from Sarah, and had minimal energy to work on the Missoula Catholic Schools mural project. She was in desperate need, she told me, of something that would help her get her work done. That month, at her semi-annual appointment with Dr. Youngman, he suggested she start levodopa. Hadley was reluctant; like all young onset Parkinson’s patients, she wanted to delay taking levodopa as long as possible to avoid dyskinesia. So Dr. Youngman switched her medication from Mirapex to Requip, hoping the different dopamine agonist would be more effective. He also gave her a prescription for levodopa, in case she changed her mind and wanted to try it. Then, Hadley asked him a question that had been nagging her since the pharmacologist at the Christmas party had questioned her Parkinson’s diagnosis.
“Do you feel certain I have Parkinson’s?”
“You have Parkinson’s,” Dr. Youngman said. “But if by next year you still don’t have a tremor, we’ll do a brain MRI to rule out atypical Parkinson’s.”
Hadley felt satisfied with this. She didn’t know what “atypical Parkinson’s” was, but in some way, it sounded better than Parkinson’s. When she got home, though, she Googled, turning up information that terrified her. Atypical Parkinson’s was not the benign variation she had assumed it was, and its symptoms, she discovered, mirrored hers to a tee.
She wrote to me with this news. I read her email twice, filling with dread. One of the several conditions sometimes referred to as “atypical Parkinson’s” is so terrible Hadley hadn’t been able to bring herself to name it in her email: multiple system atrophy. MSA is very rare, but had been on my radar from the time I first started having neurological symptoms because a woman from my small high school had died from the disease when she was forty-seven. I called Hadley immediately.
“I know I shouldn’t go crazy Googling,” she said, “But listen to this — a list of symptoms that separate regular Parkinson’s from atypical Parkinson’s: ‘falls at presentation or early in the disease course, poor response to medication, symmetry of motor signs, rapid disease progression, lack of tremor, early dysautonomia, like urinary urge or retention, persistent erectile failure and symptomatic orthostatic hypotension.’” Hadley paused. “I have everything on this list! Well, everything except erectile failure.”
We both laughed — or more like gasped. I was shocked. Besides her abnormally fluctuating blood pressure (orthostatic hypotension) I didn’t know Hadley was experiencing dysautonomia. “You have urinary retention?” I asked, feeling shy about the intimate question.
“Yeah, I kind of do sometimes. Like, I can’t go all day.”
I tried hard not to react, though this new information was a blow. Again, if Hadley had Parkinson’s, it seemed too soon for her to have this symptom. I wanted to soothe her fear, but in her words, I heard nothing but reasonableness as she calmly synthesized what she was experiencing in her body with the medical information she’d uncovered. She’d done her homework; I could see no crack in her concern where I could wedge in an encouraging word.
In an email in April, Hadley shared with Dr. Youngman what she’d been reading about multiple system atrophy (MSA). She asked him if they could investigate this possible diagnosis so that she could know sooner rather than later and prepare herself and her family. Dr. Youngman wrote back that as far as he knew, she didn’t have the typical signs of MSA and she shouldn’t “obsess over it.” He assured her that when he saw her at her summer appointment, they’d have a chance to check her progression and do necessary tests. In other words: Time will tell; let’s wait and see.
When Hadley told me about this exchange, I cringed. I knew how much she liked and trusted Dr. Youngman; now, his telling her not to “obsess” seemed not only insulting but also like a betrayal, given that he had been the first to raise the possibility of atypical PD or MSA. Had he believed he could float out the suggestion of a deadly diagnosis without inciting her need to know more? Hadley was taking care of herself, doing what any intelligent person would do: looking for answers in a calm, methodical way. “In my book,” I told her, “that’s not obsessing.” “I know,” she said. “I don’t really know what to think about it all.” The low tones of discouragement in her voice were new to me.
Requip, the dopamine agonist Dr. Youngman prescribed for Hadley, made her tired, nauseated, and sometimes dizzy. At lunch with friends one day, fifteen minutes after taking a dose, she felt the usual symptoms, but this time, she became increasingly dizzy and stretched out on the floor so she wouldn’t faint. She lost consciousness. Her friends told her later that her lips and face blanched and big beads of sweat dotted her chest. They carried her out and drove her to the ER, all of which she was unaware of until she came to in the hospital. She sent a text message right away to Dr. Youngman asking whether she could stop the Requip altogether or needed to taper. “I’m a pro at fainting,” she wrote. “So today didn’t bother me in that sense. I just don’t want to have too many repeats.”
The brave face Hadley presented to Dr. Youngman, minimizing her concern about the fainting episode, was typical of the Hadley I had come to know. Because of her medical history, it’s very important to her not to seem like she’s overreacting. But her stoic message didn’t help her get the response she needed from Dr. Youngman. It took him four days to answer her cry for help and in his e-mail, he didn’t address the fainting at all; he merely advised her to discontinue the Requip. Hadley turned to her Missoula neurologist, Dr. Reid, for help. She told her Dr. Youngman’s dismissal had made her reluctant to assert herself with him and ask more questions. Together, Hadley and Dr. Reid decided she should stop the Requip and start levodopa. Dr. Reid felt that the Requip, while not known to cause fainting, probably had aggravated Hadley’s susceptibility to vasovagal (fainting) events.
Levodopa, which had worked so magically for me, helped Hadley only minimally — more evidence that she could be dealing with MSA. Speaking with her on the phone, I knew she was scared. She understood that since there’s no treatment for MSA, there was nothing physically to be gained by catching it sooner rather than later. Still, her urgency to know grew. I knew that if I were in her shoes, I would feel the same way.
I found myself internalizing Hadley’s fear and her plight became mine. Our bond had been established on the premise of a shared certainty — our Parkinson’s disease; now, I knew I would stay with her as she veered into this territory of excruciating uncertainty. From there, our friendship would grow more complex, moving forward with less laughter, no doubt, but with an even deeper connection.