Got MS? Focus on What You Can Do, Not on What You Can’t
Posted Jun 19 2013 3:21pm
A week after returning from a snowboarding trip, Emmy-award-winning talk show host and New York Times bestselling author Montel Williams recalls how, 15 years ago, a doctor not only diagnosed Williams with multiple sclerosis (MS) but also advised Williams that he would be confined to a wheelchair within four years. “How dare that person look at me for an hour and think he can figure out what the rest of my life is going to be like,” Williams says passionately. “He had no idea who I am. MS has no idea who I am either.”
MS is a chronic disease in which the immune system attacks healthy tissue in the central nervous system — causing any number of symptoms including blurred vision, poor coordination, slurred speech, numbness, extreme fatigue, problems with memory and concentration, blindness and more. These problems may be permanent or intermittent.
“Because MS symptoms are as varied and unique as the person diagnosed with the disease,” says Nicholas LaRocca, Ph.D., vice president of health care delivery and policy research at the National Multiple Sclerosis Society, “there is no one-size-fits-all treatment strategy. Everyone needs to develop their own disease-management strategies, in consultation with their health care providers.” To this end, he notes, the MS Society provides a free MS Navigator® program to support those with MS in getting optimal care.
“It’s our responsibility to look for the ways that we can impact MS,” concurs Williams. He encourages those with the disease to take the initiative of researching treatment options available, revealing that his own research led him to an MS clinical trial that has been “life-changing.” Williams also emphasizes the importance of taking medication exactly as it is prescribed; eating whole, nutritious, unprocessed foods; exercising whatever part of the body is able to move; and getting sufficient rest.
As for his own regimen, Williams eats one cooked meal per day and drinks smoothies packed with vegetables and fruits the rest of each day. In addition, he says, “In the last seven years, I probably missed 15 workouts. In the last 13 years, I have missed medications maybe five times. I am paying attention. The more I pay attention, the better I do.” Staying positive, Williams says, and focusing on what one can do instead of what one cannot, is essential to living vibrantly despite MS.
Donna Cardillo, RN, MA, a nurse consultant, author, speaker, and expert blogger at DoctorOz.com, adamantly agrees. “I have seen so many people, and whole families, where MS becomes the sole focus on their life and relationships. It drags them all down,” she says. She recalls picking up the phone to speak with someone with MS, asking a casual, “How are you doing?” to which he barked, “I have MS. How do you think I’m doing?”
“Modern medicine can do only so much for any of us, with any illness we have,” Cardillo continues. “The mind-body-spirit connection is very powerful, not only to give symptom relief and provide healing, but to focus the mindset. And that’s perhaps the most important part of it all, whether you’re the patient or caregiver.”
Cardillo has been her husband’s caregiver for 17 years, since he was first diagnosed with MS. Rather than giving up or giving into the disease, she shares, the couple has made numerous adjustments in their lifestyle, finding a new normal. For starters, they moved from their two-story home to a single-story one, then renovated the house and built in ramps, to make it as easy as possible for Cardillo’s husband to get around. They also found new pastimes to enjoy as a couple — such as watching movies on the weekend in lieu of going out camping. For individual activities, Cardillo’s husband dove into oil painting and cooking, while Cardillo took up meditation and yoga.
According to Rosalind Kalb, Ph.D., vice president of clinical care at the National MS Society and primary author of MS for Dummies, this can-do attitude is spot-on. Each time that MS affects a person’s ability to carry out a chosen activity or role, she says “There is a feeling of loss. Self-esteem and self-confidence can be compromised, accompanied by worry that others will feel let down or resentful.” The best way a caregiver can support a loved one with MS, she advises, is to help the individual adapt, find ways around limitations, and identify tools and strategies to remain active and productive. Among other benefits, she notes, “this kind of support conveys the message that the person is valued and seen as more than her or his MS.”
Williams further encourages caregivers to nudge those with MS outside their comfort zones: “I’ve been wiping your booty for a year; you’re going outside,” he laughs, in a mock conversation between caregiver and care recipient. If a loved one with MS likes ice cream, he says by way of example, use it to entice that individual to go for a wheelchair ride through a park. “Once you’re out of your comfort zone,” he advises those with MS, “you may experience comfort you have never felt. How do you know what it feels like outside your comfort zone if you never go out of it?”
“There may be something brand new to discover, which people never tried before,” Cardillo says of her own experience with her husband. She concludes with a Helen Keller quote: “When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.”