A CRASH COURSE IN MS
Before his diagnosis, Osbourne admits MS wasn't on his radar. After learning he had the disease, which affects more than 2.1 million people worldwide, Osbourne wanted to learn everything he could about how the disease is managed.
“I didn't want to rush into any treatment decisions until I'd done some research and talked with my neurologist,” Osbourne says. “Also, I realized in retrospect that I had been having symptoms for quite some time. In 2010, I experienced numbness in my legs for about two months and just assumed it was a pinched nerve.”
Neurologist Bruce Cohen, M.D., Fellow of the AAN, professor of neurology and director of the MS Clinic at the Feinberg School of Medicine, Northwestern University in Chicago, IL, says it may take time for MS patients to get a definitive diagnosis. “Symptoms also may come and go, often disappearing for months or years,” he says.
Dr. Cohen encourages his recently diagnosed patients to discuss the risks and benefits of various therapies before beginning a course of treatment. The goal is to suppress the disease as completely as possible early on, he says.
“We look for a treatment that is effective for each individual patient and presents an acceptable level of risk to that patient in terms of potential side effects such as fatigue, flu-like symptoms, infections, injection-site reactions, and gastrointestinal problems,” Dr. Cohen says. “This can be different for different people. And some patients may have other medical conditions—such as depression, diabetes, or heart disease—that affect how well they can tolerate treatment.”
Dr. Cohen says patients should talk to their neurologist about their lifestyle, family, and employment to consider how the disease may impact their life.
“Newly diagnosed patients may be concerned that they will have to change major life plans or activities, but often this is not the case,” Dr. Cohen says.
Six weeks after his diagnosis, after reading about the disease and exploring his treatment options, Osbourne decided to start nightly glatiramer acetate (Copaxone) injections. Used to treat cases of remitting-relapsing MS, the drug has been shown to reduce the number of relapses and to slow the progression of the disease.
“Since starting medication, my vision slowly returned, and I haven't experienced any side effects,” says Osbourne, who had lost 80 percent of the vision in his right eye.
Being diagnosed at 26 posed a unique set of challenges for Osbourne. Although MS is typically diagnosed in people ages 20 to 40—with twice as many women as men—the English media personality didn't know anyone his own age who had MS.
“I've learned there are so many misconceptions about MS,” Osbourne says. “It's not a disease that only affects older people or women.”
Shortly after discovering he had MS, mutual friends introduced Osbourne to talk show host Montel Williams, who was diagnosed with MS in 1999 at the age of 42. At the time, Williams' prognosis was bleak. Doctors told him he would be using a wheelchair within four years, which turned out not to be the case.
“Montel has provided me with a wealth of information,” Osbourne says. “He's talked to me about how he adjusted his diet and stays healthy by exercising.”
Osbourne also found support through Nancy Davis, a Los Angeles-based jewelry designer and founder of the Nancy Davis Foundation, who was diagnosed with MS in 1991 at the age of 34. In April, Davis honored Osbourne and his mother, Sharon, at her Race to Erase MS benefit in Los Angeles. Davis presented the two with her organization's Medal of Hope award, given annually to those who promote awareness of MS.
Mentors can help newly diagnosed patients learn to manage a chronic condition such as MS. But finding a good mentor or a support group requires diligence and judgment.
“There's value in finding someone with similar health challenges that you can connect with, but you want to select your mentors or support group carefully,” Dr. Cohen says. “You want to find a person or group who has a situation or an outlook that is similar to your own, but you also need to find someone you can trust. If you talk to the wrong person and get erroneous information, it can make your condition seem more frightening and possibly lead you away from effective disease management.”
This is especially true for MS patients, since symptoms can vary dramatically from one individual to the next, and even in the same individual from one period of time to another.
“The National MS Society has a great program where they match individuals with peer counselors,” Dr. Cohen says. “They pair people with others who are at the same stage in their disease and help them navigate issues such as family stress or concerns about their diagnosis.”
Support can also benefit family members who have a loved one that has been diagnosed with MS. “Jack's diagnosis was a complete shock to us,” Sharon says. “Ozzy and I started reading everything we could about MS. I did the same thing after I was diagnosed with colon cancer. I think it's empowering to know what you're up against and to realize that having a serious illness isn't a death sentence.”
Sharon is proud of her son's resilience. “He's extremely strong. He's taking his health seriously, and he has a positive attitude,” she says.
While Jack Osbourne has chosen to live publicly with MS, others feel the need to hide their disease over worries that it might hurt their careers.
In August, Osbourne and his mom, Sharon, found themselves at the center of controversy after Osbourne was reportedly let go from the NBC reality series Stars Earn Stripes, featuring celebrities competing in military-style challenges. The television network denied this, saying that while Osbourne was being considered for the show, a contract had not been signed. But the incident shed light on the stigma of workplace discrimination and its effect on employees who have chronic illnesses.
The National MS Society has developed a valuable worksheet entitled Should I Tell? (Download at nationalmssociety.org.) The worksheet encourages employees to consider long-term implications and to weigh their decision carefully.
The Americans with Disabilities Act, which covers employers with 15 or more employees, prohibits on-the-job discrimination against individuals with disabilities. If you believe your rights in the workplace have been violated because of having MS, you can file charges with the Equal Employment Opportunity Commission.
For more information on your workplace rights while living with a chronic health condition, visit eeoc.gov/facts/ada18.html.
EMBRACING A HEALTHY LIFESTYLE
In the summer of 2005, Osbourne shed a whopping 70 pounds and completely overhauled his life. He got treatment for his substance abuse problems, trading in alcohol, cigarettes, and junk food for a healthy diet and regular exercise.
Today, Osbourne continues to stay active and eat healthy. He takes a multivitamin and vitamin D supplement.
“Some data show a link between low vitamin D levels early in life and subsequent increased risk of developing MS,” Dr. Giesser says. “Also, some studies show that low vitamin D levels in people who already have MS are linked to a higher risk of relapse.”
However, this research is not considered conclusive. A number of large, ongoing studies should help determine with more confidence whether vitamin D can prevent or treat MS, what blood levels of this vitamin are appropriate, how much should be consumed through diet or supplements, and how much vitamin D is safe to take. But before supplementing their diet with vitamin D, patients should talk to their doctors.
Osbourne also recently joined his parents as they embarked on a weight-loss plan. While there is no particular diet recommended for MS patients, Dr. Giesser says a healthy diet—with plenty of fruits and vegetables, lean proteins, complex carbohydrates, and polyunsaturated fats—will promote general good health and help to prevent conditions such as hypertension and diabetes that make MS more difficult to manage. Regular exercise also benefits MS patients by improving mood as well as muscle strength, flexibility, and balance.
“Not only does exercise have the same benefits for people with MS as it does for people in general, it also has been shown to lessen some MS symptoms such as fatigue and depression,” Dr. Giesser says. “Research also suggests that exercise may have some anti-inflammatory effects. This is an active area of investigation.”
Osbourne tries to exercise three to four times a week through hiking or weigh training. Patients should talk to their neurologist before starting an exercise program, embarking on a new diet, or taking vitamins and supplements, especially because some supplements can interfere with prescribed medications. Follow your neurologist's suggestions on dosage—not just of medications, but also vitamins or supplements.
Osbourne also has learned to make downtime a priority, as stress seems to exacerbate MS symptoms for many people.
“After a hectic day, I often retreat to my man cave and play Xbox for an hour,” Osbourne says with a smile. “My wife, Lisa, has also gotten very good at helping me learn to say no to professional requests. It's easy to believe that I constantly need to be on the go. Lisa encourages me to take breaks.”
Today, Osbourne—who continues to work on Haunted Highway and produce other television shows, including Alpha Dogs, the National Geographic series about an elite force of dogs that works with the police and military—says he's committed to raising awareness about MS.
“I struggled at first as to whether I should tell people I had MS, but I felt as if I almost had an obligation to go public,” Osbourne says. “MS is a part of my life, but it's not controlling my life, and I hope that bringing attention to my condition will help the global cause.”© 2013 American Academy of Neurology
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