Ann Romney Shares Her MS Story to Benefit Research
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RESEARCH OCTOBER/NOVEMBER 2015 BY LINDA CHILDERS Ann Romney Shares Her MS Story to Benefit Research Multiple sclerosis has been a tough teacher, but she says it has given her a deeper sense of compassion and empathy. Ann Romney knows firsthand how stress and exertion can exacerbate a chronic neurologic condition like multiple sclerosis (MS). Diagnosed with relapsing- remitting MS in 1988, Romney, the wife of businessman and former Massachusetts governor and presidential candidate Mitt Romney, had been in remission for years when she had a flare-up during her husband's presidential campaign in 2012. It started with tingling and numbness and progressed to dizziness and poor balance. Clockwise from left: Ann Romney in Moorpark, CA, in 2015; with her husband, Mitt, and their five boys in a family portrait in 1982; interacting with locals in Peru in 2013 during a Charity Vision mission trip; bonding with her horse in 2015; with Mitt at Bittersweet Farm in Stratham, NH, in 2011, where Mitt announced his presidential candidacy; speaking with one of many Americans on the presidential campaign trail in 2012. "The flare-up was a reminder that I need to pace myself and monitor my energy levels," says Romney, who was prescribed steroids to control the relapse. That was one of her low points during the campaign, she recalls, but being open about her illness brought unexpected moments of joy and recognition. "On the campaign trail, many people with MS would seek me out at events to encourage me and thank me for giving the MS community a voice. Often they had been standing outside in the heat for a long time, and when I would reach them, they would nearly collapse," she says with a mixture of admiration and sympathy. Pay It Forward Those moments have stayed with Romney, and now that her MS is in check again, she wants to give back. Last October, she and her husband established the Ann Romney Center for Neurologic Diseases at Brigham and Women's Hospital in Boston. The idea was sparked by conversations with her physician, Howard Weiner, MD, a neurologist at Brigham and Women's, a professor of neurology at Harvard Medical School, and a member of the American Academy of Neurology (AAN), and his research partner, Dennis Selkoe, MD, a Fellow of the AAN (FAAN), about the overlapping discoveries in treatments for neurologic conditions such as MS and Alzheimer's. (Dr. Weiner and Dr. Selkoe are co-directors of the center.) For example, Romney says, scientists researching MS at Brigham and Women's created an antibody for regulating aspects of the immune system and shared the information with researchers working on glioblastoma, a deadly type of brain tumor. The researchers determined that the antibodies also had an effect on brain tumors—a discovery they hope may lead to new treatments. That's the kind of collaboration Romney wants to encourage at the research center, which will focus on accelerating cures and treatments for MS, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), Parkinson's disease, and brain tumors—chronic conditions that affect about 50 million people in the world, according to the National Institute for Neurological Diseases and Stroke (NINDS). Romney aims to raise $50 million for the center through personal donations from her and her husband, proceeds from her cookbook, The Romney Family Table (Shadow Mountain 2013), online donations through the center's website, community fundraising, planned giving, and proceeds from her new memoir, In This Together: My Story (Thomas Dunne Books, September 2015). "My goal is that through the research center and my new book, I can continue to bring neurologic diseases to the forefront and increase overall awareness, support, and funding," she says. She also wants to give a voice to anyone with a neurologic condition, so she created a website called 50MillionFaces.org and launched a social media campaign around it to encourage those with neurologic diseases to share their stories. In Her Own Words Romney's also sharing her own story, which began with numbness on her right side. She initially dismissed it as a pinched nerve, but when she started exhibiting other symptoms like foggy thinking, poor balance, and a fatigue so profound she couldn't get out of bed, she suspected something more serious. She called her brother, Jim, a doctor, who urged her to see a neurologist. When a magnetic resonance imaging (MRI) scan revealed lesions in the center of Romney's brain, the neurologist diagnosed her with relapsing-remitting MS. This form of the disease is characterized by clearly defined attacks of worsening neurologic function, called relapses or flare-ups, followed by periods of complete or partial recovery, called remissions, during which symptoms improve and there is no apparent progression of the disease. The condition affects 2.3 million people worldwide and is two to three times more common in women than in men, according to the National MS Society. Clockwise from top left: Ann Romney on the campaign trail in 2012, where she met many people with MS; reading to four of her grandchildren; with Mitt, holding one of their newborn grandchildren; and with her mother, Lois Davies. At the time of her diagnosis, Romney says she didn't have many treatment options. Disease-modifying medications had only been introduced a few years earlier, and most neurologists relied solely on corticosteroids to shorten relapses when they occurred. "My neurologist said there was nothing he could do for me until I became really sick," Romney says. "I was shocked that even though I felt so bad, I wasn't being offered treatment." She was also terrified and depressed, worried that the disease was progressing rapidly. Researching her condition on the Internet only compounded her fear that she would soon be in a wheelchair. Then a friend told her about Dr. Weiner, who was taking a proactive approach to treating patients with MS. Early, Aggressive Treatment By the time she met with Dr. Weiner, a month after her diagnosis, Romney was falling all the time. "He started me on massive doses of intravenous steroids, which I really believe saved me, and then continued with disease-modifying treatment," she says. "I liked his philosophy that the earlier and more aggressively you treat MS, the better chance you have of the disease going into remission." Other MS experts agree with Dr. Weiner's philosophy and approach. "Diagnosing and treating MS early probably increases the chances the patient will do well," says Aaron Miller, MD, FAAN, a professor of neurology at Mount Sinai School of Medicine in New York and medical director of the hospital's Corinne Goldsmith Dickinson Center for Multiple Sclerosis. The key is to pay attention to early symptoms like "weakness, numbness, and tingling—sometimes in one limb, sometimes multiple—and optic neuritis, a vision disorder that patients describe as looking through foggy glass," he says. Back in the Saddle After the infusion of steroids, Romney still had fatigue and numbness, but she was able to walk again and felt her condition was stabilizing. The fear of losing more function prompted Romney to resume horseback riding, one of her childhood passions. "I decided I needed to go back and do what I loved before I couldn't do it anymore," she recalls. Still weak, Romney could ride for only a few minutes each day, but she slowly increased her time on the horse and now considers riding a godsend. It has improved her strength, balance, and energy—and gives her another reason to get out of bed every morning. In fact, she says, if she is off a horse for longer than two to three weeks, her family begins to see her fade. "Riding feeds my soul," she says, adding that the quiet time and enhanced physical benefits also help her beat fatigue. For people with MS who can pursue it, horseback riding can be both physically and psychologically helpful, says Bonnie Gerecke, MD, chief of neurology at Mercy Medical Center in Baltimore, MD. "It can improve posture, strengthen core muscles, and increase mobility, among other benefits." Exercise in general is good for people with MS. Studies show that it can ease fatigue, improve bladder and bowel function, and lift spirits, according to the National MS Society. For example, a study conducted by the Kessler Foundation, a non-profit dedicated to improving the lives of those with disabilities, published in October 2013 in Neurocase: The Neural Basis of Cognition, found that aerobic exercise helped to improve both brain and memory function in patients with MS. There are a few caveats, however, says Dr. Miller. People who are sensitive to heat and notice worsening or reappearing symptoms when their body heat rises should not overdo physical activity. They should also drink plenty of water and exercise indoors during the hottest part of the day, typically between 10 am and 2 pm. Fighting Fatigue In addition to exercise, Romney, 66, insists on getting at least eight hours of sleep every night to keep fatigue in check. Dr. Gerecke agrees that fatigue is a common MS symptom, and encourages her patients to determine its cause and consider treatment options. "It's important to rule out other medical conditions such as hypothyroidism, anemia, sleep apnea, or depression," Dr. Gerecke says. "I also inquire about sleep habits and determine if there are any modifiable factors that can improve sleep." For instance, some people with MS wake up frequently during the night to urinate. Dr. Gerecke says these symptoms are often alleviated after they make some dietary or behavioral changes, or by taking medications such as tolterodine (Detrol) and tamsulosin (Flomax), which reduce urinary frequency.