Ann Romney Talks of Her Struggle With MS
If there is one thing that comes out of this campaign that can be construed as positive, I would hope that Ann Romney's life with MS raises the awareness of the disease.
This actually hits close to home. My mother had a rare form of MS that was progressive. What was a vibrant lady prior to her diagnosis in 1986 turned her into an invalid, unable to speak, until her death in 1994 at the age of 48.
MS is a disease with a limited amount of treatments and ultimately no cures.
By the time she began looking for help, Ann Romney had been losing her balance and stumbling. Her right leg was numb. She had trouble swallowing and was losing strength in her grip.
She called her brother, a doctor in San Diego, expecting the kind of smart-aleck response he often used to lighten the mood. Instead, she heard a long silence.
"You need to go see a neurologist," he said.
So began Mrs. Romney's life with multiple sclerosis. Her search for relief from the ailment has taken her to one of the world's leading MS doctors, to participation in a medical study at Harvard and to an unproven therapy called reflexology.
"It's left me with a heart that's more open and compassionate for all the others who are suffering," Mrs. Romney, the wife of presumed Republican presidential nominee Mitt Romney, said in an interview with The Wall Street Journal—one of the few times she has talked publicly in detail about her illness.
Multiple sclerosis is an unpredictable disease that can cause muscle rigidity, pain, exhaustion, cognitive difficulties and paralysis. Having such a condition is an experience almost unknown for a first lady—should Mrs. Romney become one in January. Presidential historian Michael Beschloss says one probably would have to reach back to the epilepsy of Ida McKinley, the wife of President William McKinley, for the most recent case of a first lady with a lifelong malady.
In the half-hour interview, Mrs. Romney, 63 years old, talked in detail about her earliest experience with the disease. Her husband's campaign then declined requests to answer further questions, including whether her experience has affected her views on health-care policy.
Mrs. Romney said she began feeling abnormally tired in the fall of 1998. Every morning, she recalled, began to feel like "a big uphill climb." A short time later, she was diagnosed with MS. The numbness spread to her chest. She said she felt like "a Pac-Man was attacking. I felt I was being eaten away." She feared she was likely "going to be left a shell."
She went to Brigham and Women's Hospital in Boston, which is affiliated with Harvard Medical School and has a well-known MS center founded and directed by Howard L. Weiner, a prominent MS researcher and clinician. When Dr. Weiner saw MRI images of Mrs. Romney's brain, he led her by the arm into a suite for infusing intravenous medicines. The MRI showed lesions caused by the disease's attacks on brain cells. He immediately began a standard treatment of an intravenous steroid.
As with most MS patients, she has a "relapsing-remitting" type of the disease, which comes and goes unpredictably, Dr. Weiner said. For her, it has mostly gone, but it could strike again.
Dr. Weiner later enrolled Mrs. Romney in a study examining which factors are the most important in the course of the disease. She is one of more than 2,000 participants being followed at Brigham and Women's for more than 20 years, receiving regular blood tests and MRIs along with normal therapy.
"We're looking into whether she has a protective factor that we could give to other people or a detrimental factor she is missing," Dr. Weiner said. "We're beginning to learn some of the factors leading to more benign MS."
In general, her prognosis appears to be good. "It is true that if people do well for a period of time, they'll tend to do well later," Dr. Weiner said.
In MS, which affects at least 400,000 people in the U.S., the body's immune system attacks the myelin sheath protecting nerves in the brain, eyes and spinal cord. The cause is unknown. Steroids can calm an inflamed immune system, and in Mrs. Romney's case, they "stopped the attack," she recalled.
But they did little to alleviate the fatigue. Mrs. Romney's exhaustion continued for years, even after she and her husband moved to Salt Lake City for his new post as president of the 2002 Winter Olympics organizing committee. "I was still having trouble getting out of bed," she recalled.
What did help was horseback riding. Her riding forays into the Utah mountains left her feeling "joyful, energetic and stronger," she said. And, like many MS patients seeking relief, Mrs. Romney turned to alternative treatments, in her case acupuncture and reflexology. A friend recommended she visit a reflexology practitioner near Salt Lake City, Fritz Blietschau, an Air Force mechanic who died in 2001.
Some MS specialists think acupuncture can help ease physical symptoms. Reflexology, which involves massaging areas of the feet, hands and ears on the theory that these areas correspond to various organs, is widely regarded as unproven.
Mrs. Romney said she stopped taking steroids years ago. But occasionally, friends can "see the light sort of dim in my eye," she said. These episodes happen "just once in a while. I start to almost lose my words," she said of such moments. "I almost can't think." Around the March Super Tuesday elections, she began to stumble and had difficulty enunciating words. When this happens, she said, "I slip out, Mitt accommodates and I just make it work for me."
“What is it you most dislike? Stupidity, especially in its nastiest forms of racism and superstition.”
― Christopher Hitchens, Hitch-22: A Memoir