August 10, 2021

What to expect after being diagnosed with a movement disorder

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Confused about your next steps after learning you have a movement disorder? Keep these considerations in mind.

“Movement disorder” is an umbrella term to describe a group of neurological conditions that impact the nervous system. A movement disorder may cause increased or decreased voluntary or involuntary movements. Muscular contractions in the neck that cause movement are common with dystonia, for example. While tremor, stiffness, balance issues, and slow movement are some of the common symptoms of Parkinson’s, a disease many people are more familiar with.

“A lot of times I’m asked if Parkinson’s is becoming more common,” said David Charles, M.D., vice-chair of neurology and neurologist in the Movement Disorders Clinic at Vanderbilt University Medical Center. “But the prevalence of Parkinson’s increases with age. And so that leads to the illusion that Parkinson’s disease is happening more often. But actually what’s happening is our population is aging.”

If you or a loved one is among the newly diagnosed with a movement disorder, you may be wondering what to expect or what steps to take next. We asked Charles to offer guidance and insight.

A second opinion

Getting a second opinion after an initial diagnosis can be helpful. “The first time someone’s told they have a movement disorder can be very upsetting — and of course, understandably so,” Charles said. “Seeking a second opinion is always entirely reasonable.”

The right care provider

You can also seek out the right neurologist to treat your movement disorder and help guide you on your journey. Charles said it’s best to find someone close by whom you can see easily when you need to.

“For people who are able to receive their care at Vanderbilt,” he added, “we have a large division of movement disorders, with faculty specialized in the care of people with Parkinson’s disease, dystonia, essential tremor and other conditions. And not only is it a large division, it’s also one of the most highly respected in the nation.”

Vanderbilt is also an academic medical center, with some of the latest research on movement disorders happening right on its medical campus.

Studying up

Doing some homework about your condition and its treatments can also be helpful to put your mind at ease and demystify some of the unknowns. You can ask your physician for trusted resources. “For example,” Charles explained, “Learn about how differently Parkinson’s disease or another movement disorder can affect one person to the next.”

But as you learn, avoid worst-case scenario thinking. “Even though you’ve been diagnosed with a movement disorder,” he said, “and that may feel like bad news, there can be lots and lots of really good news out there.”

With Parkinson’s, for example, the movement disorder changes slowly. “I tell patients, ‘You don’t have to worry that two weeks from Thursday it’s just going to all of a sudden get terribly worse,’” Charles said. “That just doesn’t happen. People have good days and bad days, but it’s generally slowly progressive.” He said some patients progress faster than others, while some have a slight change year over year.

“We have lots of treatments that keep people active and working for many years,” he added. “And there is an enormous amount of research ongoing in Parkinson’s to develop new treatments.”

Other movement disorders progress more rapidly and require more aggressive treatments and therapies. But learning about your condition can help empower you or your loved one in your new normal.

Depending on the movement disorder and its progression, often medications, exercise and a healthy diet are the first lines of defense. Your experienced care provider will guide you on the best course of action. But also, “you should live life to the fullest,” Charles said.

Essential tremor

Vanderbilt’s Movement Disorders Clinic provides advanced care to those experiencing involuntary and excess movement, impaired balance and coordination, muscle rigidity, slow movement or other symptoms. The clinic specializes in treating Parkinson’s disease, dystonia, tremors and spasticity resulting from stroke, multiple sclerosis and head injuries. Schedule your appointment online or call 615-678-0480.

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