Ann Romney would see them at almost every rally along the campaign trail when her husband was running for president: a few men and women who arrived hours in advance to secure a spot up front, against the police barricade.
"When I would get there, there would be people at the front of the lines hanging on," Romney recalled, "and I knew who they were, they were people with MS. They’d been there for hours and hours, waiting just to say thank you to me for being an example for them."
Romney recalls men and women collapsing after they saw her, exhausted from the wait.
"And it’s now time for me to be a strength for them," Romney said Tuesday as she launched a social media campaign to capture and share the stories of 50 million patients around the world, and their families, who have multiple sclerosis or other neurological diseases.
Romney told an audience at a Partners HealthCare forum that she does not want patients to repeat the experience of her diagnosis, when 16 years ago a doctor told Romney she had MS and to come back when she got more sick.
"That was shocking to me," Romney said with a laugh. "I thought, wait a minute, someone’s got to give me a pill here? I can’t just walk out because I’m so sick."
Romney found a physician at Brigham and Women’s Hospital who offered hope. The treatment — intravenous steroids — stopped the progression of MS for Romney. But she wanted a better long-term plan.
"I was very frightened," Romney said. "Even though the answers were not good answers, I had to figure everything out myself."
Romney learned through trial and error what works for her. It's lots of sleep, exercise, often on her horse, and what she calls clean eating: no sugar, no alcohol, very little bread and a green juice of spinach, kale and ginger. She does drink Diet Coke. The 66-year-old says acupuncture and reflexology, treatments that aren’t typically recommended by doctors, have helped her as well.
She is reaching out through Twitter, Facebook and Tumblr for stories from other patients who will help doctors understand the connections between Alzheimers, ALS, Parkinson’s, MS and brain tumors.
"Let’s share what helps you feel better. It might not be the same for all of us, but these stories will hopefully bring awareness, which brings cures," Romney said.
Romney joins a growing effort to gather information from patients online.
Romney says she hopes the stories will help researchers figure out, for example, why more women than men are diagnosed with neurological ailments.
"That is the first thing I have to get out there," Romney said. "I don’t think women are aware that they have a much higher risk for Alzheimer’s, much higher risk for MS."
Dr. Howard Weiner, who is Romney's physician and co-director of the Ann Romney Center for Neurological Disease, says the prevalence of MS in women is an important clue about how the disease works.
"I think it relates to hormones, I think it relates to the immune system, and we're trying to understand that," Weiner said.
Are women more susceptible for some reason, and should the treatment be different? Those are just a few of the key questions for researchers.
Romney’s MS is in remission and she’s not on any medication right now. But she lives with the fear that the disease will reassert itself again at any moment. And when people say, "Oh, you look great," Romney knows she's masking the effects of the disease.
"Even when you’re in remission you have to deal with fatigue and you have to adapt your lifestyle to accommodate that. Sometimes I gripe about it and Mitt will say, 'Oh it’s not your MS, you’re just getting old,' which we are," she said, laughing.
But this mother of five and grandmother of 23 is busy. She's writing a book about her experience with MS and raising money for the center that she launched at Brigham and Women’s, where she goes now just for check-ups.