The story of two artists with incurable neurological diseases sharing fear, frustration and friendship on their journeys to understand their illnesses and to complete their most fulfilling creative work.
The long road to my Parkinson’s diagnosis began in early 2007 with symptoms that weren’t alarming, but were new to me and strange. In bed, while the rest of me was ready to melt into the mattress, my right leg refused to relax. I missed bits of critical dialogue in movies as I squirmed in my seat to reposition my leg so the contraction of my muscles would cease. If this isn’t a textbook case of restless leg syndrome, I consoled myself, I don’t know what is.
I made an appointment with the integrative medicine physician who had been very helpful to me beginning ten years earlier, when I was sick with something my primary care physician had no idea how to treat. I was confident he would take my report on my wayward leg seriously. But like many other doctors I’ve known, he radiated self-assurance — as if self-assurance itself had healing power — and this time, he was not at all concerned about my symptoms. He shook his head at my worrying. His prescription? Yoga. I wasn’t sure what he believed the yoga would address; my best guess was that he thought my symptoms were stress-related. But I knew my usual stress reactions: insomnia, gastrointestinal upset, anxiety. None of these had been especially bothersome in recent years; in fact, thanks in large part to this doctor, I was feeling healthier and stronger in my fifties than in my forties.
I am neither an excessive worrier nor a denier. I had read enough about medical conditions to know that symptoms don’t always point to the most common diagnosis. Nowadays, when your doctor won’t address your fears, you go straight to Dr. Google. Dr. Google lets you leap into the mouth of the dragon without judging you to be a hypochondriac. Deep in the click-hole, you can plug in symptoms and pull up diseases that make your fingers sweat on the keyboard. I would’ve had to be in deep denial not to be concerned when I learned that illnesses like multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS) both involve the kind of neurological symptom I was experiencing. I remember being haunted by the post of a thirty-year old man on an MS forum: “If you have progressive MS, understand that how you feel today is the best you’ll ever feel, because this disease only gets more horrible.” But it was ALS I was most afraid of, because it runs its course so quickly and cruelly. It didn’t occur to me to Google Parkinson’s because I assumed I was too young for PD and that tremor was its distinguishing characteristic.
But I had something. I knew that the constant muscle contractions in my leg, if not indicative of a disease process, had to at least have a structural cause. Thinking they might be caused by what felt like a pinched nerve in my low back that acted up now and then, a couple of months later, I referred myself to a spine specialist. He ordered an MRI of my lumbar spine and found nothing worth following up on. A few weeks later, I consulted with an orthopedist. He referred me to a physical therapist who detected a distinct area of immobility in my spine and prescribed stretching exercises.
A month later, I noticed in the shower that the toes on my right foot curled under and that I would stand on the outside of that foot. Aha! Perhaps the problem could be with my foot! I consulted a podiatrist who prescribed custom orthotics for my shoes. But he also noted the tingling I felt in the top of my foot and my shin when he brushed his fingers over them, and referred me to a physiatrist.
By now it was November, ten months after I first felt something was “off.” The physiatrist was a delicate young woman who suggested a nerve conduction (NCS) study and electromyogram (EMG), which would detect which nerves in my leg or back were affected. I gleaned from her cheerful recommendation that these tests would be no big deal. On the day of the testing, she opened an impressive toolbox and plugged in a wand that she touched to my leg. When I flinched from the electrical shock, she asked me if I was okay. I said yes. After all, I’d given birth twice without anesthesia; isn’t that the pain against which we measure all other pain? Up and down my leg she zapped, and when she was done with my bad leg, she went after my good one.
Then she said, “Now for the tough part.”
No one had ever described to me what an intramuscular EMG entails. Simply put, the doctor sticks a thick needle straight into your muscle and then stirs it. Imagine this as acupuncture as cavemen might have performed it. While the needles in your flesh are twisted, the nerve signals in your muscle are transmitted to the doctor’s oscilloscope, creating an unpleasant radio static — the perfect soundtrack for torture. The louder the static, the more abnormally worked up your affected muscle is. Stabbing her needle up and down my leg, the physiatrist and I began to talk, a welcome distraction. She told me about how, as a girl, she’d come to the U.S. from Vietnam after the war.
“My father,” she explained (stab!), “suffered from a neurological disease” (stab!), “due to his exposure to Agent Orange” (stab!). Her cheerfulness faded as she continued to plunge her needles into my flesh. I felt her pain, compounded by a degree of guilt; the Vietnam War had played on our family TV every night when I was growing up. I would be lying if I said the word “retribution” didn’t cross my mind as I lay at her mercy on the table. I was afraid to ask her the name of her father’s disease, as if knowing would make it contagious.
The physiatrist diagnosed me with L4-L5 radiculopathy — a spinal impingement on the nerves by my lumbar vertebrae. “No big deal,” she said, and recommended physical therapy. A couple of weeks later, a physical therapist confirmed her diagnosis, saying I needed to lengthen my spine, to work out the L4-L5 compression. This also conformed to what the first physical therapist had observed.
The diagnosis of radiculopathy was accurate, but it would turn out to be a red herring. Within a couple of months, I knew it couldn’t explain everything I was feeling, like the lack of coordination when I walked, as if my upper and lower body weren’t talking to each other. And, I remember demonstrating to a friend that while I could tap my left hand on a table rapidly and at length, my right hand would peter out and stall after a few moments. My friend didn’t tell me I was worrying about nothing; I could see in her furrowed brow that she was genuinely troubled by what she’d observed.
For the next year, I continued to consult with doctors. I tried various types of bodywork and alternative medicine, including Pilates, Feldenkrais, chiropractic and acupuncture, but nothing helped. I shared my symptoms freely with everyone I knew, picking their brains, hoping they’d have a hunch or know a miracle-worker who could diagnose or treat me.
In late 2008, after nearly two years of stifling my burgeoning fear and armed with my nerve conduction study and electromyography test results — a wad of paper with curvy graphs and charts — I went to see a general neurologist who practiced at one of the nation’s top ten hospitals. He had me sit on the edge of the table and put me through a drill designed to distinguish between the different neurological conditions. This is what that looked like: to test mental orientation, he asked me, “What is today’s date?” and, “Where are we?” To test elements of language, he pointed first to his tie and then to his pen, and asked me what the word was for each. Then, he asked me to touch my left ear with my right hand, stick out my tongue, and repeat after him, “Today is a cloudy day in San Francisco.” To test cranial nerves and vision, he examined my pupils, then had me stare straight ahead as he stretched his arms sideways and asked me on which hand were his fingers wiggling. Without moving my head, I followed his finger with my eyes as he swept it around and up and down. He asked me to close my eyes and hold my arms straight out in front of me for several seconds, then, with my eyes open, he instructed me to resist as he tried to push down my outstretched hands. Next, I was asked to tap my index finger together with my thumb on each hand as fast as I could, then rapidly tap each foot against his hand. With this test, he was looking for bradykinesia — a delayed initiation of voluntary movement, slowness or low amplitude. To test for rigidity, he asked me to relax each arm and then each leg while he moved them around. In a normal exam, the limb muscles will remain passive and loose with this action but when PD is present, there is a palpable resistance to the movement, a ratcheting called “cogwheeling.” The neurologist then tested my elbow, knee and ankle reflexes. To evaluate sensation, he ran his fingers along the back of my hands at the same time and then both calves, asking, “Can you feel this and does it feel the same on both sides?” To check coordination, he had me reach out to touch the finger he was holding up, then my nose, then his finger. Finally, he asked me to follow him into the hallway outside his office. There, he watched me walk away from him and back, again on my tiptoes, then on my heels, and finally heel to toe, as if on a balance beam. Next was a “pull test” to look for postural instability. The neurologist stood behind me and yanked my shoulders. When a healthy person experiences a threat to their physical stability, the brain will trigger a rescue reaction to keep them from falling. In people with Parkinson’s, there is often a loss of these postural reflexes. Actually falling backward during a pull test doesn’t usually occur until later in the disease, but the neurologist will look for how well the patient responds: did she need to take one step back or two? Did she stumble backward before regaining stability?
Back in the exam room, the last test the neurologist asked me to do was write my name — to me, the most mysterious of all his requests. If I had suspected Parkinson’s, the handwriting task would have been a dead giveaway that he was looking for PD, since at some stage the disease causes tiny handwriting, or “micrographia.” My handwriting was normal. I’d passed all of his other tests, too. He told me to return in a year if my symptoms worsened.
Leaving his office, I felt relieved until I was reminded of my wacky gait on the way to the elevator. I was reminded that no news was not necessarily good news. And a year in limbo seemed like a very long time.
Within a few months, my walk felt even more awkward. One day, I noticed the man who owned the audio equipment store next door to my office limping awkwardly just like me while he was crossing the street. I screwed up the courage to ask him about it. “Pinched nerve in my neck,” he told me.
Hopeful that this could be my problem too, I had a cervical spine MRI done. It was normal. More good news, I supposed, but I was no closer to understanding why when I walked, my right leg wasn’t keeping up. Trudging uphill — unavoidable in San Francisco — I felt like I was battling a headwind while walking through deep snow.
And now I had a new problem: a frozen shoulder, or adhesive capsulitis, caused by the vigorous tree and bush pruning I’d done over the course of a few summer days. Unlike my neurological symptoms, my abused shoulder caused pain — the teeth-grinding type. I took it to a new physical therapist who assured me that most of his clients were women over fifty with frozen shoulders — a message, I assume, that was supposed to reassure me. In fact, it did. A year later, I would learn that often, people in the early stage of Parkinson’s develop a frozen shoulder. But at the time, it was comforting to have a condition so ho-hum that a young male PT could crack a joke about post-menopausal women to a post-menopausal woman.
Once the PT had worked on my shoulder and instructed me on exercises for it, I showed him my walk.
“Swing your arm!” he called out.
What? I wasn’t swinging my arm? We practiced walking in place, which took a lot of concentration for me to do properly. “You just need re-training,” the PT said, as if every day, people forgot how to walk. He was certain that the cause of my symptoms was a slipped SI joint. “Trust me,” he said with doe-eyed sincerity. “Nothing terrible is happening to you.”
All the people I’d consulted about my symptoms had been so very optimistic! They seemed, actually, aggressively optimistic. I wanted very much to believe them, but I wasn’t feeling it. When you’re moving in a way that makes your family and closest friends wince with barely-concealed terror, it’s not human to assume the best-case scenario. You don’t think, oh, the fact that I can’t coordinate my arms with my legs when I walk is probably because my kids are stressing me out.
Far from reassuring me, the optimism of these health practitioners made me lonely and afraid in the body that was becoming a stranger to me.