What's Wrong with Me?
Neurologist Maria De Leon confronts her own perplexing symptoms.
"I think you're starting to over-empathize with your patients,” my husband reassured me while we cleared the dinner dishes. As a neurologist specializing in movement disorders, I often asked patients to rapidly tap each finger to their thumb or open and close one hand at a time. But I had started having difficulty demonstrating the moves. “You’re spending too much time at the office,” he said. I wanted to believe him, but instead I went to see a general neurologist, who told me I had dystonia (involuntary muscle contraction) and prescribed Xanax.
Over the course of the next year, I developed work-arounds for my existing problems—like doing a straight-line walk next to a wall so I wouldn’t fall over—but new symptoms appeared. My staff complained about how awful my handwriting had become, so my nurse started writing all my scripts. When I found myself heading to the bathroom hourly, I took note of every restroom in the vicinity to avoid an accident. Again, I went to see a doctor (a urologist this time) and got a diagnosis that didn’t fit: He thought the new symptom was the result of my uterine fibroids enlarging—even though a month before I’d been told they were shrinking. Extremely discouraged, I took his prescription for Detrol, an overactive bladder medicine.
Then the pain began. About a year later, in 2008, I started to feel an occasional throbbing sensation in my left ankle that would disappear after I walked a bit or took a Motrin. Even though I consulted an orthopedist, the ache not only became relentless, it spread to other parts of my body. Upon the slightest touch, my arms and left leg felt as if acid were being poured over them. I couldn’t stand my husband touching me and, worst of all, I had to try to explain to my 4-year-old daughter why mommy couldn’t hug her. Many nights, despite the severe pain it triggered, I would rock my daughter in my arms and sing to her with tears trickling down my face. Sometimes I had to hold on to my husband’s arm as we walked because my balance was off, my vision was worsening, and I was starting to have frequent falls. I was on the verge of losing my mind—and my medical license. I’d come to the office late, leave early and struggle with my schedule at the hospital.
In my heart I constantly considered that I had Parkinson’s Disease (PD), a progressive neurologic disorder that impacts movement and coordination. In my head my medical training told me that PD was unrelated to pain and vision problems. And not a single endocrinologist, rheumatologist, neurosurgeon or movement disorder specialist I visited could confirm PD—or any other accurate diagnosis for that matter. Trusting my instincts, and exhausted by years of questions, I made an appointment with a colleague, Mya Schiess, MD, the director of the Movement Disorders Clinic & Fellowship Program at The University of Texas Health Science Center at Houston.
“If this is all in my head, like my last doctor suggested, I’ll gladly go see a psychiatrist to get my life back,” I told her. But after performing tests, she came to a different conclusion.
“Your brain isn’t producing enough dopamine,” Mya said. “I think you have young onset Parkinson’s disease [YOPD].”
The average age for PD diagnosis is 60, but with YOPD (which makes up 5% to 10% of the Parkinson’s population) it’s under 40. I was 39 at the time. Everyone in my field was familiar with the four key motor symptoms of Parkinson’s: tremors at rest, slowness of movement, abnormal gait and stiffness. But only in the latter part of the past decade have other non-motor symptoms (pain, visual disturbances, fatigue, depression, mood disorders, sexual problems and cognitive difficulties) been recognized as early PD. “We now realize that when your brain becomes unbalanced because of a neurodegenerative disease like Parkinson’s, functions other than movement are affected,” explains James Beck, PhD, vice president of scientific affairs at the Parkinson’s Disease Foundation. “However, because all these symptoms on their own are common to many other diseases, it is extremely difficult to see the forest for the trees.”
Real relief arrived when Mya started me on two Parkinson’s drugs—Sinemet and Azilect—which almost immediately reversed or lessened my symptoms, though not without some side effects like severe nausea and low blood pressure, which resulted in my almost passing out a few times. We tinkered with my dosage for nearly a year until we found the right combination of medications. I’ve been on the same drugs for the past six years along with a third, Neupro, that we added three years ago.
While I was desperate to get a diagnosis, life isn’t perfect now that I have one. Yes, drugs allow me to walk normally, drive safely and avoid a million trips to the bathroom. And I can hug my 13-year-old daughter—even though she’s at an age when she’s no longer crazy about that in public. But there are still days my body and brain are completely disconnected. My daughter has learned not to rely on my math skills, and my husband arranges an extra pillow between us at night because PD sometimes escalates my dreams into interactive events. I also have to nap or at least rest awhile during the day. I’m like a doll that needs to be wound up all the time to keep going; otherwise, I’ll just stop.
Looking back, I wonder how many times I missed a diagnosis of PD in patients because we once believed it was all about the execution of movements without vision problems or pain at presentation. There was—and is—still so much to learn about an illness that I supposedly was an expert on. “Parkinson’s isn’t a typical disease,” says George Plotkin, PhD, MD, director of the ETMC Movement Disorders Center at the ETMC Neurological Institute. “There is no one face, no one symptom that characterizes those who live with it daily.” These days I use my skills and experience to promote changes in the thinking behind the science of Parkinson’s and the care of Parkinson’s patients. While I no longer practice, I spend my time working with the Parkinson’s Disease Foundation as a research advocate to raise awareness and help find new treatments. I’m thankful that I still get to be involved in the care of those with Parkinson’s. Only the setting has changed. Finding myself at both ends of the wellness spectrum—as a doctor diagnosing Parkinson’s and a patient living with the condition—has taught me that happiness can be attained...even in a life interrupted.
How to Get Diagnosed—Accurately!
Note all symptoms. Everything from trouble sleeping to loss of smell has been linked to PD— particularly if you’ve been exposed to environmental toxins, suffered repeated or severe head trauma, had an early hysterectomy or have a family history of PD.
Pick a doc you trust. Locate an MDS (movement disorder specialist) who is willing to listen, admit when she doesn’t know the answer and work to find one.
Be your own best advocate. Remember: No one knows your body like you do.
Where to Learn More: Parkinson’s Disease Foundation pdf.org, National Parkinson Foundation parkinson.org, Parkinson’s Action Network parkinsonsaction.org, American Parkinson Disease Association apdaparkinson.org