A serial about two artists with incurable neurological disease sharing fear, frustration and friendship as they push to complete the most rewarding creative work of their careers.
Read Episode Twenty-Three: Losing Ground, Gaining Altitude. Or, start at the beginning: An Illness's Introduction. Find all episodes here.
Founded in 1977, Dr. Truitt's neurology clinic in Houston is a leading research and clinical institution focused on movement disorders. 35,000 patients from all over the world are in their database; on this day in November 2013, Hadley's and Lucy's appointments were two of the 10,000 per year that are scheduled at the clinic.
Dr. Truitt ushered Lucy and me into his exam room. "How are you?" he asked Lucy as we sat down.
When a doctor throws out this question at the start of an appointment, I never know if it's rhetorical or how to answer. "I'm fine, thank you," is not exactly truthful so I usually end up saying, "All things considered, I'm doing well," which is itself a throwaway. So maybe "I'm fine, thank you" would suffice after all.
In the chair, Lucy's legs and arms were shifting like branches in a blustery wind. I imagined her thinking: How do you think I am? "I'm having a lot of dyskinesia," she said.
"Let me see you walk."
Lucy stood and walked the two feet toward the closed door, then turned around.
"Actually, you look pretty good."
I was shocked; Dr. Truitt couldn't possibly assess Lucy's dyskinesia from that tiny maneuver. "You need to take her out in the hall and watch her walk, " I said.
He did. I got out my notebook and started taking notes. When they returned to the room, Lucy pulled out her phone. "Here's a video Hadley took of me yesterday while I was folding laundry."
Dr. Truitt leaned into her phone to watch. "Whoa," he said. "You really get going. I can see that." He questioned her closely about her dyskinesia and her medication schedule. "I think you need to be taking a lower dose of levodopa more frequently. That might help with the dyskinesia. You're getting too much levodopa all at once. But also, I think you should get evaluated for DBS surgery. You're a perfect candidate."
Lucy groaned. As a doctor and a Parkinson's patient, she'd seen this coming for at least a year. She was taking less levodopa than I was, but as her disease progressed and she needed more, the uncontrolled movements the medication was causing would only get worse. Deep brain stimulation (DBS) surgery more often is becoming the intervention for this, even in younger patients, as it can eliminate the need for levodopa for many years.
"What's your concern?" Dr. Truitt asked.
"It's brain surgery. I have two little kids. I worry about the risk of cognitive decline caused by the surgery. I mean, isn't there anything we can try that's less invasive?"
She knew the answer was no. Later, Lucy and I would talk about the Michael J. Fox Foundation study that had just begun that was testing a new drug for the treatment of levodopa-induced dyskinesia. The research was promising. But how long would it take for the FDA to approve it, and could Lucy afford to wait?
"The risk of cognitive decline from DBS is pretty low," Dr. Truitt told Lucy. "We don't want to miss the window for your having the surgery."
Lucy nodded, but I didn't know what the doctor meant by "the window," so I asked. Dr. Truitt explained: "We won't do DBS on patients who already exhibit cognitive decline. It's too risky."
He was recommending the surgery to Lucy because cognitively, she was still in great shape. I understood her conflicted feelings -- I couldn't imagine being the mother of two young children facing this decision. It would be one thing if she were unable to walk or drive or play with her children and brain surgery would give those things back to her. But she could do all that and was making her life work, in her own dancing way.
Dr. Truitt typed on his computer, then looked at Lucy. "So are you still practicing?" he asked.
"What? You mean medicine? Oh no, I haven't done...I was licensed in Arizona, but when we moved to Texas, I had this...thing...going on and I never got around to getting licensed. And with two kids -- "
"You're not seeing patients anymore?"
I winced as I scribbled down their conversation. Did Dr. Truitt really think Lucy could have patients and take care of her own kids with the dyskinesia she had? Also, how could he not know the question, posed in that way, was a total downer for Lucy?
Lucy's hands were busy now, touching her face, her hair; her feet were wagging and twisting. "No, no. Not for a long time. It didn't seem like a good idea. And my three-year-old's kicking my ass."
"So you can't practice, but could you do something else? They're always looking for doctors to review records."
"Oh, sure," Lucy said. She sounded far away. "I mean, I'm always thinking of things I could be doing...like there's this organization that teaches science to girls. I'd think about doing something like that at some point."
Lucy wriggled as if trying to work her way out of a tight space. I had a fantasy that her unruly foot would make contact with Dr. Truitt's shin and she'd say, "So, should I have the brain surgery before or after I restart my medical career?"
But Dr. Truitt only nodded. He told Lucy to stop by the appointment desk on her way out to schedule an evaluation for DBS.
"God," Lucy whispered, when we were in the hallway. "Why does he always ask me that? Every time I see him I tell him I'm no longer practicing, but he keeps asking anyway. It makes me feel so bad about myself."
"I don't think his question could've had anything to do with you," I said. "It was too absurd. I think he was projecting his own horror at the thought of having been anointed a doctor and then not being able to practice. I bet he won't ask Hadley about her work."
Lucy rolled her eyes. "Ugh."
I was pretty sure my cranky analysis could not even begin to reassure someone who'd just been prescribed brain surgery.
Hadley's appointment followed on the heels of Lucy's and Dr. Truitt got right down to business by asking how she was, this time in a productive way: "How are you doing relative to when I saw you in July?"
As Hadley began to speak, he typed on his computer. By 2013, about 50% of doctors had switched from paper to electronic records, which meant that they were, and still are, often typing while talking to their patients. Dr. Truitt was not watching Hadley as she reported she was stiffer, her balance was worse, and she had to keep herself from falling every day. "I stay pretty close to walls and furniture so I can catch myself." She told him she couldn't urinate all day sometimes and that she was working with a urologist. "Have you used a catheter?" Dr. Truitt asked, still looking at his screen. Yes, a couple of times, Hadley told him. She mentioned that she had drenching sweats for no apparent reason and that she was often hot and cold at the same time.
"People with your condition have trouble regulating body temperature," Dr. Truitt said. "How about breathing?"
"Sometimes I have a hard time breathing out. "
"Do you have to sigh to get the breath out?"
"Yes."
"Is the levodopa helping you?"
"It takes the edge off. "
"We should increase your dose. You're taking a very small dose."
"Really? 1000 milligrams a day?" Hadley said. I was surprised too; 1000 milligrams was more than three times the amount I was taking.
Dr. Truitt put Hadley through the neurologist's drill, as he had with Lucy -- foot tapping, finger pinching, following his finger with her eyes.Then he asked, "Are you able to function relatively independently? If you had to live by yourself could you manage?"
Hadley was taken aback by this question and so was I. She'd just gotten herself from Montana to Texas, and why would she have to live by herself? It seemed as if maybe Dr. Truitt had a box he needed to check on his computer screen.
"Yes," Hadley said. "I can take care of myself." She turned to me and laughed. "What do you think, Catherine?"
"You can definitely take care of yourself! And you juggle a lot of other things, too," I said.
If Dr. Truitt had asked Hadley what she was juggling or working on, her response might have helped him a lot with his assessment of how she was faring with her disease. Of course, it also would have humanized their interaction. He asked nothing further and scrolled on his screen.
"Your brain MRI from this morning looks remarkably unremarkable. It's really good. Essentially normal, unless the radiologist sees something I don't see."
"That's good," Hadley said, though she and I knew she had mixed feelings, since in the past, normal tests had been responsible for delaying her diagnosis.
In July when Dr. Truitt diagnosed Hadley with MSA, she'd been relieved to finally have a name for her disease. Now, I could tell we were in the home stretch of the appointment and I found myself wondering why MSA hadn't been mentioned by name; maybe after all these months, I needed to hear it, too. "Can people with MSA have normal MRIs?" I asked.
"Initially yes, especially when they're very young, like Hadley." He didn't name it, but his answer was a confirmation of sorts.
Hadley asked, "What do you think about the prognosis -- from here, looking out?"
Eyes on his screen, Dr. Truitt said, "I'm encouraged by your minimal change since July, and you do have some response to levodopa. And a good MRI. Can I see you back in about six months?"
Hadley wasn't going to get a prognosis from him and maybe that was okay; who could say? As we left Dr. Truitt's room with him, I glanced at my watch. Hadley's appointment had been eighteen minutes long. In the corridor, it became clear why he'd moved through Hadley's and Lucy's exams with the efficiency of a mechanic: I could see patients waiting for him in other rooms. "How are you?" I heard him say as he slipped into one and closed the door.
On our way out of the clinic, Hadley didn't stop at the desk to schedule a follow-up appointment.
The next day, as Hadley and I were wheeling our suitcases from the hotel to Lucy's car so she could drive us to the airport, I glanced back at Hadley and caught something in her face I'd never seen before. Her eyes were saucer-like, her mouth pulled into a grimace -- a look of terror, as if she were witnessing a grisly murder right there in the serene, jasmine-filled courtyard. When she caught my eye, she smiled and her expression turned soft again. I thought: MSA was the monster only she could really see.