An Alert, Well-Hydrated Artist in no Acute Distress
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
Hadley’s stepfather, Charlie, died from complications of Parkinson’s on October 10, 2013, only four years after being diagnosed. He was 73. Hadley had been close to Charlie and was going to miss him tremendously, I knew. I wondered how it had been for her to witness the precipitous decline of someone who had been diagnosed with a neurological disease. Even more difficult, I imagined, was to confront the death of a loved one only a few months after learning her own illness was terminal.
When I asked her about this, she told me, “Watching how this all went with Charlie made me think about how I might do some things differently. And it made me wonder if this is how it will feel for Sarah to say goodbye to me.” She added, “I always thought I’d donate my brain to science, but now I find myself wondering: How would they use it?”
I was sad for Hadley and her mother, Jana, and Charlie’s death rattled me in another way. Charlie wasn’t old; why had his disease progressed so fast? I wondered. Could he have had Parkinson’s for many years before he was diagnosed? Why were medications not working for him? When you have a disease, it’s hard not to feel afraid when that disease whisks someone away.
For the next couple of weeks, Hadley helped Jana with the transition, completing paperwork, planning a memorial, going through Charlie’s things. When I spoke with her in late October, I was struck by how weak and hoarse her voice sounded. “I finally hit the wall,” she said. “You can probably hear it in my voice.”
Hadley told me she’d started LSVT LOUD, Lee Silverman Voice Training, a protocol developed to specifically address the vocal impairment that can be caused by Parkinson’s and MSA. With both diseases, inadequate muscle movement in the larynx, respiratory system and the mouth can compromise vocal loudness, breath and articulation. Conventional speech therapy has been unsuccessful at treating this condition, in part because PD patients sometimes have a deficit in sensory processing that makes them unable to perceive the softening of their voice. LSVT addresses all aspects of vocal function through a series of exercises that are focused on the goal of speaking loudly. Rather than training people to shout, LSVT brings the voice to a healthy volume without strain by stimulating the motor speech system. Sensory awareness training also helps the patient learn to recognize the volume level of her voice.
“Oh, guess what else?” Hadley said. “I had a swallow test. I know this sounds silly, but I’m feeling pretty good because my chewing and initiating a swallow were normal, but there was a delay when the food got farther down my throat.”
She paused and I tried hard to grasp where the good news was in this.
“You have no control over that part of swallowing farther down,” she explained. “It’s part of the autonomic system. You can’t cause that dysfunction just by being anxious.”
Once again, I was reminded of how deeply traumatizing it had been for Hadley when people didn’t believe she had a real, organic disease; she was still struggling to shake the self-doubt their dismissiveness had seeded.
Hadley had scheduled a November follow-up with Dr. Truitt in Houston, which she arranged to be on the same day as our YOPD Facebook friend Lucy’s appointment. I decided to meet the two of them in Houston. It had been a year since I’d spent time with Hadley at the Mayo Clinic, and writing about her made me especially miss being with her in person. I was also curious to hear what Dr. Truitt would say about Hadley’s MSA four months after he’d diagnosed her, and excited to meet Lucy. Lucy never failed to make me laugh with her wickedly funny, bold Facebook posts that always brought out my own irreverence. Hadley flew to Austin, where Lucy lives with her husband and young daughters, and they drove together to Houston.
From the lobby of the Houston Hilton, I watched Lucy and Hadley emerge from Lucy’s white Audi station wagon. Hadley — slim, demure-looking with her long hair and glasses, jeans and cardigan, too covered for the eighty-three degree day — moved slowly toward the car trunk. Lucy sprang from the driver’s seat all tan and tank top, Lycra and platform sandals, big hoop earrings and a hip, don’t-mess-with-me short haircut. She lurched to the trunk and yanked out their suitcases with enough force to propel them across the street. If I didn’t know Lucy, didn’t know Parkinson’s could strike the young and had just seen her on the street, I might have suspected she was on crack.
We exchanged warm embraces and from that moment, time seemed to slow. I became aware of every detail. Part of the reason for this was surely because I was a writer doing research. I was also subconsciously aware that my sojourn with Hadley and Lucy would provide a rare opportunity to observe members of my “tribe”; if I paid close attention, they would have things to teach me about my Parkinson’s self. As we headed to the elevators towing our suitcases, Lucy took the lead at top speed, carving wide arcs across the lobby. “Once I get moving, I have to move!” she called back to us. Lucy had had PD for ten years, since finishing her medical residency in pediatrics. Before taking levodopa, she’d had severe difficulty walking and needed a scooter to get around. Levodopa restored her ability to walk , but she was among the unlucky ones who almost immediately develop dyskinesia after starting the medication. It looked exhausting to be in her perpetual-motion body and I knew she even hurt herself occasionally when an errant arm or leg made a sudden move. Immediately, I felt an even deeper admiration for her energy and determination, her sense of humor and proud style.
The three of us were all fumbling hands, trying to operate the elevator. Since impaired manual dexterity is a hallmark of Parkinson’s, we were quick to blame ourselves when we couldn’t get the slot in the elevator panel to accept our room cards. We were hopeless! At least that’s how it felt until three other women got into the elevator and couldn’t make their cards work, either. We laughed at ourselves: the cards were the problem.
The hotel room I’d reserved was spacious but as cold and forgettable as the Rochester TownePlace Suites had been, with the same maroon and grey color scheme. Over the couch hung two architectural prints of Ionic and Corinthian column capitals — an attempt, perhaps, to leave the guest with a subliminal impression of the style and detail the room lacked. The large windows that looked out at Baylor Hospital’s medical facilities didn’t open, and either they were filthy or Houston was experiencing terrible smog. Twelve stories below us in the toaster-like slot of space between the modern building slabs lay a rectangle of turquoise — a pool without a single soul around it. The view could have been a still from a futuristic film in which a unit of water is set aside in the grid to service the human’s vestigial, primal need to immerse her body in something wet.
We couldn’t escape the room fast enough. Lucy had lived in Houston and knew where we needed to go to grab some color, comfort and good vibes to normalize this strange interlude. We indulged in the best Mexican food I’ve ever eaten — a scrumptious concoction involving pomegranate, walnuts and poblano chilis. Lucy and I ordered margaritas that the waiter shook at the table. Hadley ordered her usual, a mojito. We took a few selfies. We giggled. We could’ve been friends on a girls’ night out, like the ones at the next table. We were. Girlfriends, more or less.
In the morning, I wondered aloud to Hadley and Lucy if we should avoid parking problems by walking to Dr. Truitt’s office. When Lucy said, “It’s almost half a mile,” I was embarrassed by my gaffe; for Hadley, half a mile would have felt like three. When we arrived at the medical building’s parking garage, it was full. We were directed to a valet parking area another block away and when we got out of the car, we walked down a series of corridors for what seemed like a half mile, to the neurology clinic. Lucy zoomed ahead — it was already ten o’clock, her appointment time — and the faster she moved the more her body careened. Dyskinesia, I had learned, is always worse when you’re late.
Dr. Truitt’s receptionist took us in: a dazed, variety pack of wacky-walking gals. How often did friends with neurological diseases hang out together at the doctor’s office? There were only two other patients in the waiting room — so different from Dr. Bright’s waiting room in San Francisco, where people come from all over northern California to be seen by the neurology specialists. The forty-seat room always provides me a reality check on how difficult life is for many people and how lucky I am that Parkinson’s is my only hardship. Whole families fill the space. I’m often the only one who’s without a caregiver and for this I’m grateful, because it means that so far, I’m able to be. The children in Dr. Bright’s waiting room especially break my heart — babies in arms, children in wheelchairs — as do their weary-looking parents. Adults of all ages struggle to fill out forms or walk ten feet to the reception desk. Their white-coated doctors come out to cheerfully greet them, sometimes humoring them as if they’re children. Let’s face it: when you’re neurologically impaired, you are, in some ways, like a child. You’re losing basic abilities — walking, waving, writing, smiling and even talking — that you worked so hard to master as a youngster. By the time Dr. Bright comes to fetch me for my appointment, I’m often sweaty and filled with mixed emotions: relief that I am as well as I am and that my children are healthy, and profound fear of what’s ahead.
Now, Dr. Truitt’s empty waiting room triggered the heebie-jeebies in me, even though I was not the one with the appointment. It didn’t help that the wall-mounted TV was filling the windowless, fluorescent-lighted space with violence: tornadoes in Illinois and a video loop of cops shooting into a family-filled SUV in New Mexico. Everywhere, calamity. Did we need to be reminded of this now? Here?
Lucy was jiggly in her chair; after dinner the night before, she’d stayed out late with an old medical school friend. She knew I was going to accompany Hadley to see Dr. Truitt. “I’m totaled,” she told us now. “I wouldn’t mind having another pair of ears at my appointment.”
Delighted I could be helpful, I told Lucy I’d be those ears.
While we waited, Hadley was silent. I knew she’d barely slept because every time I’d turned over, she was under her bed covers reading Brain On Fire in the light of her iPhone. She didn’t eat or drink when she got up, either. I wondered if her expectations about her meeting with Dr. Truitt were raised, especially since she’d flown from Missoula to Salt Lake City, endured a two-hour layover, flown to Austin, then driven three hours to Houston. But what did “raised expectations” mean in the context of her MSA diagnosis? It didn’t mean good news, because there was no good news yet about MSA. It didn’t mean new information because Hadley had done her research. In the absence of news or information, I imagined what she hoped for was to establish a bond with Dr. Truitt, the doctor who’d finally seen her and her rare disease. Perhaps this was unreasonable thinking on my part, since Hadley was only one among hundreds of patients in his care. But our specialist is the person in our life who best understands our disease. It seems natural that we would regard him or her as a kind of guardian of our new, permanently altered selves and would seek a degree of protectiveness and empathy from them.
I hoped Dr. Truitt would deliver.