by Ann Romney
My annual visits to the MS Center, as well as my occasional phone calls for advice about certain issues, kept me connected to Dr. Weiner. And as I got to know him I realized what a truly unique person he is. There have been times, for example, when he might have made requests to me that would have benefitted the center. But he has never done so, not once. During Mitt’s term as governor, for example, he never asked me for a single thing. Politics never entered our discussions because, as he pointed out, “MS is an ecumenical disease: it doesn’t discriminate between people with different political beliefs.”
Year by year, advances continue to be made. In 2003, for example, researchers in Italy began transplanting cells to facilitate nerve tissue repair in mice with MS. A 2004 study conducted by the MS Society indicated that African Americans tend to get the more aggressive form of the disease. Scientists from around the world came together in 2007 at a Stem Cell Research Summit to map a strategy for attacking the disease with stem cells; and that same year, many genes were linked to susceptibility to MS. An international force meeting in 2009 published guidelines to enable physicians to differentiate MS from look-alike disease. A major study to assess the value of vitamin D supplements began in 2011. By 2014 the first clinical trials of myelin repair strategies progressed into phase two. And seemingly every year, new drugs have been approved by the FDA to fight this disease.
While there still are no therapies that will repair or restore the damage, at least doctors can now map out a battle plan to slow down the disease’s progression. There is currently an array of medicines used to respond to the initial onset and to change the course of the disease, to deal with relapses and to manage the variety of symptoms. Attacks or relapses are caused by inflammation in the central nervous system, and the best treatment for that, it turns out, is steroids. While there is little evidence that steroids have long-term benefits, they do beat back an attack pretty rapidly.
The first drug therapy to fight MS, interferon, became available only in 1993, although few physicians prescribed it. But by 2015, the FDA had approved twelve different drugs for recurring MS that helped blunt the severity of the attacks and the disease’s progression. All these drugs, unfortunately, target the relapsing form of the disease. Each works by affecting a different area of the immune system. Because MS treatments have to be tailored to the individual patient, the more effective drugs there are, the better the chance that early intervention will prevent the disease from progressing.
There also are other drugs to deal with all the symptoms, although these are not aimed solely or directly at MS patients. Thirteen different drugs on the market can be used to fight bladder problems, for example. There are drugs that help patients combat spasticity and walking problems, drugs for sexual problems and depression, drugs for bowel problems and tremors. Many of these, of course, are common and popular drugs that are widely used no matter the underlying disease, such as Zoloft to fight depression. But all of them have given MS doctors weapons they never had before.
I know how fortunate I have been. As Dr. Weiner told me, “In your lifetime as an MS patient, we’ve seen MS changing from an untreatable disease without a lot of medicine options to a disease where every couple of years a new medicine became available—although still only for the remitting form. The main problem is understanding the side effects of these different medicines. We don’t know yet who should get what medicine or how to give them without causing the side effects, and figuring that out is one of the specific goals of the CLIMB study.”
One of the exciting developments to come out of Dr. Weiner’s lab is a nasal vaccine that in very early testing has been shown to be effective against progressive forms of MS. Most current treatments work by turning the immune system on to attack and destroying the enemy, T-cells. Dr. Weiner and his associate Dr. Lior Mayo, who joined the lab in 2010, wondered about a different approach to fight progressive MS by inducing and then enhancing the immune system’s ability to regulate itself. They created a nasal vaccine using an antibody called anti-CD3, which was originally developed to fight organ rejection after a kidney transplant. It works by secreting an anti-inflammatory substance. Dr. Mayo found that these nasal drops actually halted the progression of the disease in animal models, successfully reducing the scope of an attack and the damage to the myelin sheath and the nerves. If it continues to prove successful, it would be one of the first treatments for progressive MS.
Another important discovery made in the lab was a potential vaccine for Alzheimer’s disease. Dr. Dennis Selkoe was conducting an experiment in which he injected animals with the amyloid-beta peptide (A-beta), a substance found in the plaque that accumulates in the brains of Alzheimer’s patients. He wasn’t the first scientist to do this. This type of experimentation had been going on since at least 1999. When animal models were given a combination of the peptide and an adjuvant (a substance that turns on the immune system, causing it to respond), they got an unexpected result: While some of the “patients” died, others developed a condition that mimicked MS. There was no logical reason for this, and both Weiner and Selkoe became intrigued. For more than five years they tried to figure out the mechanism. Eventually they injected their Alzheimer’s mouse models with this facsimile MS, and something totally unexpected happened: It cleared all the A-beta from the brain. It actually made Alzheimer’s plaque disappear, and disappear completely, leaving the animals with this form of MS. Selkoe’s theory was that the appearance of MS triggered the system to make antibodies against A-beta in the brain. The animal’s immune system had successfully been activated to attack and destroy the Alzheimer’s-causing plaque.
Howard Weiner and Dennis Selkoe were close friends and medical associates for decades, but each had found his own specialty and rose to the top of his field. While from time to time there had been some overlap in their work, this was the first time their two passions came together so perfectly. “Dennis asked me to come into the lab to look at something,” Dr. Weiner remembers. “‘Look at this,’ he said. ‘But I’m not going to tell you which is which.’ When I followed his instructions, I almost couldn’t believe what I was looking at. The A-beta was being cleared. ‘Howard, oh my God,’ he said excitedly and gave me a big hug.”
A similar experiment being conducted in another lab, which was published first, showed the same results. The big difference between the two experiments was that the other lab was injecting the A-beta antibody, while at Brigham it was being given as a nasal spray. The group that developed the injectable form of the adjuvant received permission from the FDA to conduct live trials. When they did, unfortunately, some of the participants died, while others got the MS-like disease. The FDA immediately shut down the experiment, which prevented Selkoe and Weiner from testing their nasal vaccine on humans.
Still, a failed experiment can provide a lot of vital information. Ethically you can’t treat Alzheimer’s by giving people MS, so Weiner and Selkoe began wondering if they could isolate the factor independent from the MS that was clearing the plaque and use that to treat the disease. After almost four years of work, they developed an adjuvant that appeared to stimulate the immune system without causing MS. Rather than the adjuvant traditionally used in MS treatments, they substituted the adjuvant commonly used to develop influenza vaccines. This adjuvant had already been proven safe in humans. And it worked. It did not cause MS in animals and it cleared out the A-beta. By 2015 the nasal vaccine for Alzheimer’s was in the early stages of testing.
One additional and especially important assessment to come out of the lab and the CLIMB study was a compilation of the different ways patients adjusted to their MS diagnosis. After decades of working with MS patients Dr. Weiner had been witness to the great variety of strategies people had adopted to deal with their new reality. While not all of them worked, a lot did. As I read this list of common and successful strategies, I realized that, without knowing it, I had pretty much done each of these things. This is a pretty good checklist for dealing not just with MS,
but as so many others have learned, with any bag of rocks:
Deal with your depression. The first thing almost everyone has to deal with is the natural depression that comes with any significant and negative change in your life. How well I remember those days after my diagnosis, the feeling that my life was over and it was only a question of how much I would suffer. Depression in those circumstances is normal, but when it lasts too long or drastically changes your behavior, it can be debilitating. There are different ways to deal with depression, including taking antidepressant medications, seeking counseling, exercising—and following the subsequent advice in this list.
Make and strengthen connections with others. When I was diagnosed, I had not only Mitt and our family, but also friends like Laraine. When I needed it most, I had Margo and the girls in the barn, who took me into their world and would not let me wallow in self-pity. I remember my original doctor suggested that I join an MS support group. I decided not to do that, instead unexpectedly finding so much of the social support I needed in the world of dressage.
Make achievable goals. Setting realizable goals will provide a feeling of accomplishment. Stephanie Nielson made her own simple list of the things she used to do before her plane accident, from changing a diaper to climbing a hill, and checked them off one by one as she accomplished each of them. My list was simple, too. I wanted to make dinner for my family, become a better rider, and eventually be good enough to compete on a high level in dressage. I also wanted to walk just a little farther every day than I had the day before. I set both short-term and long-term goals, what I wanted to get done in the next day or so and what I wanted to accomplish at some indeterminate time in the future. And while I didn’t write them down, they were always there just ahead of me. And when I accomplished even one of the small ones, I always had a great feeling of achievement that reinforced my belief that my health was, at least partially, in my hands and that I was doing something to fight the monster.
Identify your strengths. Dr. Weiner noted that his patients were able to locate and identify their strengths; they often did so, he added, by remembering how they’d dealt with problems in the past. I was fortunate enough to have certain traits that proved important to me, including determination, a competitive spirit, and a strong work ethic. While each of these was incredibly important, my biggest strength might have been the role models I had in my parents and my in-laws. These were four remarkable people. In almost every trying situation, I could look into my memory and find some sort of guiding value. Both my father and George Romney had overcome tremendous obstacles to reach great success; both my mother and Lenore Romney were stylish, loving, supportive, and independent women. When I was down, I would remember my mother who, when she knew she was dying, refused our offer that she stay with us and allow us to take care of her, because she would never have allowed herself to become a burden to anyone else. Or I would remember my father, who refused to allow his failures in business to keep him from his eventual success. I would think about George Romney, who celebrated his love for his family by taking each of his grandchildren on a drive across America to visit historic sites after they turned twelve; and Lenore, who when asked why she accepted the challenge of running for the Senate against a popular incumbent said simply, “If not me, who?”
Take action. Dr. Weiner and his team became active in their fight against this disease. “It’s not enough to talk,” he said. “One must do something, particularly about MS.” While he suggested that I do anything, from becoming involved in fund-raising to mentoring someone with MS, I followed the good advice I had been given and experimented with alternate and holistic therapies—to be used in addition to, not in place of, sound medical treatments. That’s how I found my wonderful Fritz. In doing so, I let down barriers and was willing to try things I had so easily dismissed in the past. I also started riding again, which in my case made such a substantial difference. It was a challenge and a joy, and became the bridge to my new life.
Express gratitude. This is another way of pointing out how important it is to direct your focus as much as possible to the positive things in your life. I never forgot for an instant how fortunate I was to be married to a supportive man, to be surrounded by a loving family and supportive friends, and to have the resources to pay for my treatment. Even during my darkest moments, I was able to see a flicker of light, and eventually it grew bigger and brighter. I’ve had the opportunity to meet many other people carrying heavy weights, and I have always been amazed by their resiliency. When I meet people struggling with issues, the first thing they want to do is share photos of their children or grandchildren with me. I know that it isn’t always easy to do this. There are moments when that bag of rocks gets so heavy that people wonder if it’s worth carrying it any farther. Yet those moments pass, and taking note of those things in your life that are positive will help you get through them.
Use your faith or spirituality. There are questions that can’t be answered by science or personal experience, and “why” may be the most difficult one of all. At times it can be greatly beneficial to stop struggling to answer that question and find contentment in your version of faith and spirituality. That sustenance may come from an organized religion or from nature or from your own set of beliefs. While my religion has always been my touchstone, the awe and the extraordinary peace that I experienced while sitting on a rooftop with my father looking into the night sky has remained an essential part of my character. Dr. Weiner writes that faith and spirituality help his patients remember that “there is much possibility of healing, even when there is no cure.” What often can be derived from beliefs and experiences is optimism, a feeling that there is so much more around us than we know or understand. There were moments when I rode slowly through a mountain forest and simply looked around at the extraordinary beauty and knew for certain that miracles do happen.
Maintain hope. It is essential for your future well-being that you maintain hope. No matter what the circumstances, maintain hope. While campaigning, as often as possible I tried to meet with those people with MS who came to our rallies. I wanted them to see how well I was doing, to remind them that there is hope for our whole community. And the message I delivered was always some version of “Hang in there, help is on the way.” And it is. In the 1920s Americans by the millions looked in the mirror every day and repeated the self-affirmation written by Emile Coué, “Every day, in every way, I’m getting better and better,” and they continued to repeat it until they began to believe it and it made them feel better. Well, it is a fact that every day, in every way, we are getting closer and closer to cures and treatments for our most devastating diseases. We have more support, better experimental equipment, and dedicated researchers working every day to find answers. There is no question about it; help is on the way.
Give. Giving your time, your experience, and your strength allows you to engage with other people. While great satisfaction comes from the act of giving itself, equally important is how giving forces you to engage in the world. Too often people who face challenges don’t want to participate in the world; they want to be left alone. Forcing yourself to give whatever it is you have to offer can change your entire attitude. It doesn’t matter what it is. In many situations the most valuable thing you can give—for yourself even more than the recipient—is your time. One of the depressing realities for people facing serious issues is the recognition that the world continues to move forward without them. Forcing yourself to participate in that world, even when you don’t feel great, can make a huge difference.
Use humor. Something funny happened on the way to the hospital. Okay, it probably didn’t. But as Dr. Weiner points out, it is really important that we don’t cut ourselves off from the full range of emotions, especially humor. Numerous studies have shown that humor can relieve stress, help stimulate your immune system, and even reduce pain. I will never forget sitting in my first doctor’s office with Mitt as that physician responded to Mitt’s question about intimacy by
telling us about a couple who maintained a relationship by touching pinkies—and then the surge of humor I felt later when Mitt and I were standing together and he entwined my pinkie in his.
Experience the full range of emotions. Maybe the best remark about dealing with all of life’s challenges came from my seventy-two-year-old mother as she was hunched over the wheel of her Pontiac GTO. She was caught in traffic and started screaming about bad drivers. “Ugh,” she said in frustration, “these old people!” My brother Jim, sitting in the passenger seat, laughed and pointed out, “But Mom, aren’t you old?” Being old was not something she could change, but, as she responded, “But I’m not slow!” The other emotions count too. It’s not only okay to cry, it’s important to cry. It’s important to feel the entire range of emotions. I can’t tell you how angry and frustrated I got at times, but letting it all out rather than pretending it wasn’t there or holding it inside made a big difference for me. I can say it’s a good thing I don’t curse, because at times, when my horse wasn’t responding to me and I let loose everything that had been pent up inside, I would not have been pleasant to be around. Cutting yourself off from emotions is the same as cutting yourself off from the world.