Editor’s Note: This week is MS Awareness Week and people everywhere are creating connections stronger than the ones MS destroys. During this special week, take action to help others learn more about MS and what they can do to make a difference. In 1998, Ann Romney, wife of American businessman and politician Mitt Romney, was diagnosed with MS. Here, she shares her experiences as someone living with MS.
Real World Healthcare: How did you first learn you had MS?
Ann Romney: The year was 1998, Mitt and I were living in Boston. We had five sons, mostly grown with our youngest son still living at home as a senior in high school. The symptoms came on slowly at first, I would feel dizzy or have a hard time holding a glass. Then they worsened, I was tired, my right leg was numb, I was losing my balance. I explained my symptoms to my brother Jim, a doctor, and he suggested I see a neurologist. Mitt accompanied me to the doctor to find out the results of testing, we learned together I had MS.
RWHC: What were some of your biggest concerns when you were first diagnosed with MS? How did the time and energy required to take care of your own health impact your family?
AR: When first diagnosed with MS, I was very frightened and depressed. I had many commitments, to my family, church and community. My biggest concern was that I would not be able to keep up with my responsibilities in and outside of the home much less take care of my health. The disease was progressing rapidly and I had no idea if it would stop or how debilitated I would become.
I was blessed to have Mitt by my side. He didn’t miss a beat and immediately picked up the slack at home. We ate a lot of peanut butter and honey sandwiches (Mitt’s specialty) during that time but what really mattered was the love and support I received from Mitt and my family.
RWHC: Tell us about your earliest days with the disease—the process of being diagnosed and starting treatments—did you have any difficulties accessing the appropriate physicians and/or treatments?
AR: When I was diagnosed in the late 90s, there weren’t many treatments for MS. I was told to go home and come back when the disease got really bad. That was a common response to an MS diagnosis 20 years ago. Then a friend told me about a neurologist who took a different approach to treating MS, Dr. Howard Weiner at Brigham and Women’s Hospital. The first time I saw Dr. Weiner, he told me he would be aggressive in treating the disease – I began intravenous therapy that day.
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RWHC: I understand that you have credited a mixture of mainstream and alternative treatments with helping to manage your disease. Explain how that is so.
AR: I feel best when I am properly rested, eating healthy, whole foods and when I incorporate exercise into my daily routine. I try to do yoga or Pilates several times a week as well as ride horses, all have been extremely helpful in developing my core. When newly diagnosed, I tried several activities to boost my energy including reflexology and acupuncture. Over time, these methods helped to improve my energy levels.
RWHC: What was the turning point or catalyst that changed you from an MS patient to an MS activist?
AR: During the campaign, I was blessed to have the opportunity to travel the country and hear from Americans daily. At many of the events I attended, people diagnosed with neurologic diseases would come out to support me – not because we shared political ideology but because we had a disease in common. They would often wait standing in the hot sun for hours. By the time I would reach them, they would be tired and weak – sometimes collapsing. I can’t tell you what it meant to me – day after day – having those people show up for me. After the campaign ended, I would often find myself thinking of those people and wonder how I might return the favor. How I might show up for them.
While talking with Dr. Weiner at one of my annual visits, he told me about the research he was doing in the MS space and that it was affecting research in other neurologic diseases. I asked him what was needed to further the research, he said awareness and funding. That’s the moment I knew I could be helpful. Together with Brigham and Women’s Hospital, we opened the Ann Romney Center for Neurologic Diseases.
RWHC: Explain the type of work you’re doing to establish the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital. What is your goal and the goal of the Center?
AR: Through the Ann Romney Center for Neurologic Diseases, Brigham and Women’s Hospital we will convene and lead a global collaboration in medical research to accelerate treatment, prevention and cures for five of the world’s most complex and devastating neurologic diseases. Together, we will inspire hope and empower those confronting multiple sclerosis (MS), Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors.
I have set a personal goal to raise 50 million dollars in support of the Ann Romney Center. My mission is to enable the doctors at the Ann Romney Center to find cures for neurologic diseases so that the next generation does not have to suffer as so many are today.
RWHC: Many MS patients are not just grappling with the health effects of the disease, they are grappling with the financial effects as well. For some, it may come down to decisions between paying their monthly mortgage or paying for their monthly medications. Fortunately, there are charitable patient assistance programs like the HealthWell Foundation, which provide financial relief—even when the patients have insurance, the costs of the copays alone can create financial hardship. How important do you think programs like this are in terms of helping patients manage their disease?
AR: Being diagnosed with MS was one of the scariest moments of my life—for me and for my family. But we were fortunate to have access to great care, treatment and therapy. I am grateful for programs such as The HealthWell Foundation that work to remove some of the financial burden of treatment and allow the patient to focus solely on their treatment and recovery.
RWHC: What do you want MS patients and their professional and family caregivers to know about MS?
AR: Collectively, MS, Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors affect more than 50 million people worldwide. These neurologic diseases are among the most devastating diseases of our time.
In my darkest hour, Dr. Weiner was a beacon of hope. I was desperately sick and feeling very alone with my illness. Life felt out of control and I didn’t know how to make it better. I was losing hope. Dr. Weiner took me by the hand and said, “You’re going to be okay. Come with me. We’re going to take care of you.” Giving my disease over to Dr. Weiner allowed me to stop worrying and instead focus on getting better. And after a long battle with MS under the care of Dr. Weiner, I am in remission. Dr. Weiner and the incredible folks at Brigham and Women’s have created a center that is improving lives every single day. I am humbled that my name is associated with this work, and through the Ann Romney Center for Neurological Diseases, I want to be that beacon of hope to those suffering, just as Dr. Weiner was for me.