Jean Martinez of Oak Lawn, Ill., and her husband, Danny, were sitting in a restaurant in 2009 when he noticed that her head was very slightly shaking “no.” Though she didn’t think much about it at first, he kept bringing it up over the next few months. “He told me that if I just moved my head a tiny bit, it would stop,” she recalled. “I thought it was just because I was a nervous person. “
Gradually, the shaking worsened, causing neck pain and also spreading to her hands and other areas of her body. “I was to the point where I could barely wash my hair, barely drive,” said Martinez, who was working as a medical assistant at the time. “I walked like I was drunk, and I couldn’t think straight.”
The shaking exhausted her and she lost weight. Normally outgoing, she became painfully self-conscious and started avoiding people. She quit an extra part-time job as a bartender because she was afraid that customers would see her head shaking and think she had been drinking.
“Sometimes I’d catch sight of myself in a mirror, and what I saw really scared me,” she said. “The only time I didn’t have shaking was when I was asleep, and I dreaded waking up.”
She and Danny even had to abandon playing guitars together, which they had done as a family hobby since they met. He bought her a keyboard when the shaking made it impossible for her to manage her guitar.
Several neurologists tried to help Martinez, but their attempts were unsuccessful. One treated her for a year and a half with injections of botulinum toxin (Botox), but the treatments had no effect.
Resolving a Dissonant Diagnosis
Martinez’s grandfather had Parkinson’s disease, so she knew she had a family history. While both she and her primary care physician suspected she could also have the condition, specialists told her she was too young, and diagnosed the problem as essential tremor (the most common cause of head shaking). When their treatments for essential tremor failed, her primary care physician referred her to Tao Xie, MD, PhD, director of the Parkinson’s Disease and Movement Disorder Clinic.
“Misdiagnosis of essential tremor is not uncommon, and many people come to me for a second opinion after they’ve been treated elsewhere,” Xie said. “Quite often they’re very nervous initially, because they have seen so many other doctors and they don’t know what’s going on.”
To confirm the diagnosis of Parkinson’s disease, Martinez underwent DaTscan imaging, a molecular imaging method that helps physicians detect levels of the protein that transports dopamine to cells in the brain. This technique shows how much degeneration has occurred in the areas of the brain that produce and transmit dopamine. Generally available only at academic medical centers, the scan is typically used as needed after a brain MRI rules out certain conditions that mimic Parkinson’s symptoms. Xie says symptoms of actual Parkinson’s generally don’t appear until patients have lost about half the nerve cells involved in dopamine production. DaTscan will show that loss. It will also rule out essential tremor, because the neurons are not lost with that diagnosis.
“It’s a very useful test to support the Parkinson’s diagnosis in a right clinical setting,” Xie said.
The scan showed that while Martinez’s condition was partially due to essential tremor, her primary diagnosis was Parkinson’s disease.
Silencing Her Symptoms
At that point, Xie prescribed several medications to control Martinez's tremors and alleviate other symptoms — such as anxiety, depression and muscle rigidity — that often accompany Parkinson's disease. He says there are many medications in the arsenal to treat Parkinson’s symptoms, but some patients experience side effects — such as hallucinations, dizziness, nausea and ankle swelling — often requiring several tries to determine the most effective regimen.
Fortunately, the combination fit Martinez’s needs extremely well on the first try, with no side effects. Now 59, she is tremor-free thanks to the medication regimen Xie prescribed in early 2013. She started feeling better immediately, and gradually the shaking subsided.
“It took a couple of weeks, but then my head stopped shaking and it hasn’t shaken since,” she said. The Parkinson’s medications even took care of her anxiety and depression without the need for separate mood-regulating medications.
While UChicago Medicine's multidisciplinary team is amply skilled in treatment techniques, such as Botox injections and deep brain stimulation (DBS), Xie says medication is generally the front-line choice for most patients. He estimates that about 90 percent of the patients he sees can be successfully treated with medications.
Martinez found healing and comfort not only from her medications, but also in Xie’s deep level of genuine compassion.
“I was a complete mess when I went to see him,” she said. “He was so kind and nice, and he told me his mom used to have tremors and he would help me. He was really reassuring.” On several occasions, when Martinez called the office with questions, Xie called her back himself. “I thought that was impressive.”
Martinez understands the medications may someday lose effectiveness, and she’s willing to consider surgical treatment if Xie recommends it. So far, though, the medication regimen has given her complete relief. She can carry her granddaughter up and down the stairs without fear of falling. Always an active person, she has resumed working out at the gym every morning: walking three miles, using the elliptical machines, and doing strength training. The pain in her neck is entirely gone.
Previously, Martinez scheduled follow-up visits with Xie every four months so he could assess the effectiveness of her medications and check for side effects. Xie has since changed Martinez's follow-up schedule to every six months, because she continues to do so well.
She and Danny are playing duets again, both on the guitar and on the keyboard. “He takes the left hand and I do the right,” she said. These days when she sees someone shaking, she wants to say, “Go see Dr. Xie, because there is relief. You have to seek it out and not be in denial.”
Tao Xie, MD, PhD
Tao Xie, MD, PhD, specializes in the diagnosis and treatment of various movement disorders, including Parkinson's disease (PD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), cortical basal ganglionic degeneration (CBGD), Huntington's disease (HD) and chorea, tremor, dystonia, hemifacial spasm, blepharospasm, tics, and Tourette syndrome.Read Dr. Xie's physician bio