Julie Roberts' ballad “Stronger” could easily be the 35-year-old country singer's theme song. During the past few years, Roberts has faced her share of challenges: losing her home in the 2010 Nashville flood, parting ways with a record company, and receiving a diagnosis of multiple sclerosis (MS). But instead of letting these setbacks derail her dreams, Roberts has made it her mission to persevere.
Today, the South Carolina-native is celebrating the release of her album Good Wine and Bad Decisions with Sun Records. Teaming up with the label was an exciting step professionally, as Sun Records is known for its work with music legends Johnny Cash and Elvis Presley, among many others. Roberts has also learned to manage her relapsing-remitting MS symptoms through a combination of medication, diet, and lifestyle changes. (See box, “Multiple Sclerosis: The Basics.”) She is committed to raising awareness of this chronic neurologic condition that affects 2.3 million people worldwide.
Multiple Sclerosis: The Basics
What is multiple sclerosis?
Multiple sclerosis (MS) is a chronic disease that affects the central nervous system, which is made up of the brain, spinal cord, and optic nerves. MS damages the material that surrounds and protects nerve cells, called the myelin sheath. This damage slows down or blocks messages between the brain and the body. No one knows what causes MS, but many scientists believe it to be an autoimmune disease, in which the immune system launches a defensive attack against the body's own tissue.
MS is classified into four types, characterized by the progression of the disease.
- ▸ Relapsing-remitting MS is characterized by relapse (periods of symptom flare-up) followed by remission (periods of recovery). Symptoms may vary from mild to severe, and relapses and remissions may last for days or months. More than 80 percent of people who have MS begin with relapsing-remitting cycles.
- ▸ Secondary-progressive MS often develops in people who have relapsing-remitting MS. In secondary-progressive MS, relapses and partial recoveries occur, but the disability doesn't fade away between cycles. Instead, it progressively worsens until a steady progression of disability replaces the cycles of attacks.
- ▸ Primary-progressive MS progresses slowly and steadily from its onset. There are no periods of remission and symptoms generally do not decrease in intensity. About 15 percent of people who have MS have this form of the disease.
- ▸ Progressive-relapsing MS is a relatively rare type of MS in which people experience both steadily worsening symptoms and attacks during periods of remission.
What are the symptoms of MS?
Symptoms generally first appear between the ages of 20 and 40 and can include tingling, numbness, loss of balance, blurred or double vision, and weakness in one or more limbs.
As the disease progresses, symptoms may include muscle stiffness, pain, difficulty controlling urination, and cognitive problems.
How is MS treated?
While there is no cure for MS, the disease is highly treatable. Ten drugs are approved by the U.S. Food and Drug Administration to slow disease progression: beta interferons (Avonex, Betaseron, Extavia, and Rebif); glatiramer acetate (Copaxone); fingolimod (Gilenya); natalizumab (Tysabri); mitoxantrone (Novantrone); dimethyl fumarate (Tecifedra); and teriflunomide (Aubagio).
For more Neurology Now articles on multiple sclerosis, go to http://bit.ly/x4E6Fb.
ELECTRIC SHOCKS, BLURRED VISION
Roberts initially began experiencing puzzling symptoms in 2005 while she was on tour to promote her first album. “I would get these electric shocks. They would start at the back of my head and spread across my skull and down my spine,” Roberts remembers. “My vision was also blurry, and I had problems holding the microphone. I would have to switch my microphone back and forth between my hands to get through a song.”
Roberts' symptoms are among those commonly seen in newly diagnosed MS patients, according to Anthony Reder, M.D., a neurologist who specializes in MS at the University of Chicago Medical Center and a member of the American Academy of Neurology (AAN). “For example, Lhermitte's sign is the name for those brief, stabbing sensations—like electric shocks—that run from the back of the head down the spine. It can be brought on by bending the neck forward. This is a common early symptom of MS. Optic neuritis, where patients experience blurry vision, and sometimes pain when moving their eyes, is another one of the first symptoms that leads to a diagnosis of MS,” Dr. Reder explains.
After Roberts finished her tour, she made an appointment with her primary care doctor, who ordered magnetic resonance imaging (MRI) of Roberts' brain and neck that revealed eleven lesions—in other words, areas of damage. Her doctor also referred her to a neurologist who wanted to obtain a sample of Roberts' spinal fluid through a lumbar puncture (spinal tap). A spinal tap that reveals an abnormal autoimmune response within the brain and spinal cord—such as a large number of certain antibodies—might suggest MS. “My doctor called to tell me that the results of my spinal tap did not indicate MS, but the brain scan and my symptoms did,” Roberts recalls. “He recommended starting medication, but I chose to forgo medication at first and instead try to focus on living as healthy a life as possible.”
For Roberts that means exercising daily, getting seven to eight hours of sleep each night, and eating a healthy diet. “My doctor was okay with my plan, but he asked that I return every six months for a brain scan to see if I had any additional lesions. He also asked me to keep a journal of my symptoms,” Roberts says. “All of my scans had been the same up until recently, when my brain scan revealed one additional lesion, so I decided to begin taking medication. My doctor and I explored the different medication options.”
While making lifestyle modifications can help retain balance and flexibility and promote cardiovascular fitness and a sense of well-being in MS patients, they have not been shown to delay or impact disease progression, says Barbara Giesser, M.D., clinical professor of neurology and clinical director of the Multiple Sclerosis Program at the University of California, Los Angeles, and Fellow of the AAN. “At least 85 percent of patients with MS will continue to develop more lesions over time,” notes Dr. Giesser. “Since early treatment can slow the progression of MS and help to reduce the frequency and severity of relapses, I strongly encourage patients to start treatment with one of the disease-modifying medications that we use to treat MS,” she says.
GOING PUBLIC WITH HER DIAGNOSIS
Although Roberts learned she had MS in 2006, it wasn't until 2011 that she revealed her diagnosis to fans. “My fans stood by me after I lost both my home and record deal. I consider them part of my family. So I wanted to come forward with my diagnosis as well, not only to let them know what was going on in my life, but hopefully to inspire others with MS,” Roberts says.
While Roberts doesn't regret going public with her diagnosis, she has encountered some of the biases and misunderstandings that surround MS. “Sometimes I have to reassure people who book my shows, that I can still perform,” she says. “Some people are afraid that I can't do a show or that I won't show up, but I let them know performing is my life and I have no intentions of quitting.”
While Roberts has chosen to go public with her diagnosis, people with MS and other chronic neurologic conditions sometimes feel the need to hide their disease over worries it might affect their careers. However, laws are in place to protect people in the workplace. (For more on this, see “Know Your Rights” at http://bit.ly/1m7bMks. In addition, the National MS Society has developed a valuable worksheet entitled “Should I Tell?” that people can download at http://bit.ly/1iWthnT.)
Multiple Sclerosis, Then and Now
While multiple sclerosis (MS) currently has no cure, many treatment options exist that can help manage the course and symptoms of the disease. This was not the case until the 1990s, when disease-modifying drugs began to become available. “A lot of the exciting research right now is focused on repair strategies,” says Barbara Giesser, M.D., of the University of California, Los Angeles. “Several experimental drugs are in the pipeline that may have restorative and neuroprotective properties in addition to anti-inflammatory properties,” she adds.
Richard Kraig, M.D., Ph.D.—member of the AAN and William D. Mabie Professor in the Neurosciences at the University of Chicago—received a five-year, $1.5 million grant from the National Institutes of Health to study newly discovered particles that appear to regenerate brain myelin, the protective sheath around neurons that is damaged in MS. These particles, known as exosomes, are released by immune cells into the circulatory system in response to exercise. “Evidence shows that exosomes can be crafted into a novel therapy to treat MS,” Anthony Reder, M.D., of the University of Chicago, says. “Studies such as this offer hope that more effective treatments for MS could be just around the corner.”
Researchers are exploring stem cell therapies as well. “We are just starting to see the first human trials of a certain type of stem cell in people with MS,” Dr. Giesser says. Dr. Reder points to the research of AAN member Steven Goldman, M.D., Ph.D., as an example. “Dr. Goldman's study published in the Feb. 2013 issue of Cell: Stem Cell shows that human brain cells created by reprogramming skin cells have the potential to be highly effective in treating myelin disorders, a family of diseases that includes MS,” he notes.
In addition, research is beginning to find out more about the role of smoking, diet, and exercise in MS. “Smoking, for example, has been shown to increase the chances of MS progression, and of course can also lead to other health problems,” Dr. Giesser says.
LIVING WELL WITH MS
Although she always ate a healthy diet, Roberts made some modifications after her MS diagnosis and now tries to eat more lean meats and colorful vegetables. Dr. Giesser notes that while no one diet has been shown in a controlled trial to treat MS symptoms or impact disease activity, some dietary manipulations may impact some MS symptoms. She recommends that her MS patients follow a healthy diet containing abundant amounts of fruits and vegetables, lean proteins, complex carbs, and polyunsaturated fats.
“When anyone eats sugar or refined carbohydrates, their blood glucose spikes and then plummets, and this crash can increase fatigue, which is already a concern for most MS patients,” Dr. Giesser says. “Eating foods containing protein will provide more even blood glucose levels and avoid having a sugar high and then crashing.”
Roberts says fatigue can be an issue for her, so she makes it a priority to get eight hours of sleep each night, even when she's traveling. She also enjoys running, and finds trails in the cities she tours. “The guys in my band will usually run with me. If the weather is bad, I might exercise with a workout video in my hotel room or on a treadmill in the hotel gym,” Roberts says.
Staying active is crucial for MS patients, says Dr. Giesser who encourages her MS patients to get regular exercise. “In addition to the usual benefits of exercise, data suggests that exercise may improve MS symptoms such as fatigue and depression, and possibly have other neurologic benefits as well,” Dr. Giesser says.
While scientists don't fully understand what triggers MS, a growing body of research suggests a link between vitamin D levels and MS. In fact, a Swedish study published in the Nov. 20, 2012 issue of Neurology, one of the AAN's medical journals, found that adults who had high blood levels of vitamin D were 61 percent less likely to develop MS than people with lower vitamin D levels. “Data suggests that low vitamin D levels may increase the chance of an MS relapse,” Dr. Giesser says. “MS patients should ask their doctor about monitoring their vitamin D levels and what amounts of the supplementation are appropriate.” Roberts supplements with vitamin D and a multivitamin on a daily basis, she says.
In addition, the singer has found solace in meeting others with MS. Through her involvement with the National MS Society, Roberts has even found a mentor, Jeannie Unruh, someone who has MS symptoms similar to her own.
“I met Jeannie at a fundraising event for the MS society in Indiana, and we've become great friends,” Roberts says. In fact, Roberts spoke to Unruh before she decided to recently begin daily injections of medication used to delay the progression of MS.
“I feel more optimistic about my diagnosis today,” Roberts says. “I've also learned that while MS is a part of me, it doesn't define who I am and it won't deter me from pursuing my dreams.”