Actress Madeleine Stowe Opens up About Her Father's MS

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AUGUST/SEPTEMBER 2015 BY GINA SHAW Actress Madeleine Stowe Opens Up About Her Father's MS When Stowe's father was diagnosed with multiple sclerosis in the 1960s, the family had few options and lile support. Today, Stowe is oering both to other families.

Madeleine Stowe can't recall a time when her father walked like other dads. "He always moved a little differently," says the star of the ABC drama Revenge, whose character was dramatically killed off in the series ﬁnale in May. (The actress's ﬁlm credits include Last of the Mohicans, Blink, Stakeout, and 12 Monkeys.) "I remember when I was about three, hearing a discussion about him having double vision. By the time I was four it was worsening. His leg strength had also deteriorated, and there were hand controls on the car. He retired from his job as a civil engineer by the time I was six, and he was in a wheelchair full time in short order after that." COURTESY MADELEINE STOWE

Today, Stowe's father, Robert, might be diagnosed with primary- or secondary-progressive multiple sclerosis (MS), the latter of which is deﬁned as a gradual worsening of the disease after an initial relapse (ﬂare- up) and remitting (recovery) phase. (To learn more about MS, read The Basics: Multiple Sclerosis.) But back in the 1960s, MS was still poorly understood, with few diagnostic tests and no disease-modifying treatments.

"We weren't very good at diagnosing people back then, and magnetic resonance imaging [MRI] scans didn't come into use until about 1982," says Barbara Giesser, MD, clinical director of the University of California, Los Angeles MS Program at the David Geffen UCLA School of Medicine, a Fellow of the American Academy of Neurology (FAAN), a member of the Neurology Now editorial advisory board, and co-author of the newest title in the AAN's Neurology Now Books series, Navigating Life with Multiple Sclerosis. Robert's doctors, she assumes, would probably not have been able to tell him much more than that he had MS and that the course of the disease was unpredictable.

A Steep Decline For Stowe's father, that course ended up being particularly treacherous. "My dad lost control of most of his bodily functions, really all of them as time went on. He also lost his memory," she says.

That isn't unusual. Some degree of cognitive impairment can affect between 40 and 70 percent of people with MS, says Patricia Coyle, MD, a professor and acting Stowe with her father, Robert, in 1958, before he was diagnosed chair of neurology and director of the with MS. COURTESY MADELEINE STOWE Multiple Sclerosis Comprehensive Care Center at the Stony Brook University Medical Center in Stony Brook, NY. "All types of MS can lead to cognitive loss, but a number of studies have suggested it may be most common in secondary-progressive MS. It appears to be the result of injury to the cortex [outer layer] of the brain and atrophy of brain matter."

Signs of injury to the brain's cortex can be seen on imaging studies, such as MRI, even after the ﬁrst ﬂare-up of the disease, says Dr. Coyle.

As her father declined, Stowe, her mother, and her two siblings were left to care for him on their own.

"I remember washing my father when I was around eight or nine. That probably was not an appropriate thing for a child to do, but we just did not have the resources for outside help," she says. "My mother would get up several times a night to change his bedding. My bedroom was near the laundry machine, so I would get up to help her." Those years were tough, and Stowe's mother didn't get out much, but she stayed steady with the support of an extended network of friends, says Stowe. "She was on the phone with them a lot, and that helped her through."

Awkward Moments When her dad was still able to, he would wheel himself onto the porch to watch the neighborhood activity. "Sometimes he would fall off. I remember looking around to see if anybody had noticed," Stowe says. "If we couldn't pull him up the steps, we'd get the neighbors."

Despite being around him all the time and providing much of his care, Stowe says she did not really know her father. "He was not a communicator. He would always answer in monosyllables." The one time he showed intense emotion was when she had a seizure at age eight, after having a fever. "When I came out of it, my father was sitting at the foot of the sofa. He had somehow gotten himself out of bed in a panic, and he was weeping. I think he was so afraid that MS would happen to me."

A Tense Childhood As a child, Stowe developed what she calls a sense of "hyper-vigilance." "Our whole lives became [about] anticipating my father's every move. When he was still smoking, I'd sit nearby with a glass of water because he would inevitably drop the cigarette, and I'd pour water onto his chair," she says. "We were always anticipating the unpredictable. It can leave you with a bit of post-traumatic stress disorder [PTSD]. I have actually been diagnosed with it. I had all the symptoms [which include nightmares, ﬂashbacks, and intrusive thoughts] and realized what it's from."

Even in the midst of the family's struggles, Robert's status as a military veteran, his Social Security beneﬁts, and a small income kept the Stowes aﬂoat in the middle class. "I remember my mom saying, 'We have a hundred dollars in the bank, and I think we can make it,'" Stowe says. "She made sure that I could be educated and that I could have the music lessons that were so important to me."

Despite his rapid decline, Stowe's father lived for more than two decades, ﬁnally passing away in 1983 at the age of 57. Until the last two years of his life, he lived at home, which wasn't easy, Stowe says. "I was afraid to bring kids to the house, because I didn't know what was going to happen next. Loud sounds bothered him, for instance," she says. "But he liked to come and pick us up at school, so my mother would go through the process of loading him into the car to do that. She wanted him to have that."

Nowadays, more help is available for families of people with MS, much of it aimed at minimizing the kind of stress the Stowes endured, says Dr. Coyle. "There is more recognition of the importance of aiding caregivers," she says. "The various MS societies all have programs for caregivers that range from education and peer support to therapy and respite care when someone is more disabled."

Opening Up About MS The sense of isolation Stowe and her family felt is the main reason she has signed on as the spokesperson for "Lights, Camera, Take Action on MS," a public education campaign sponsored by Genzyme, the manufacturer of the MS Stowe played devious diva drug Aubagio (teriﬂunomide). She is Victoria Grayson on ABC's TV hosting several live events across the drama Revenge. ABC TELEVISION NETWORK country, including in Pittsburgh, Atlanta, and Las Vegas, where she'll share her story and answer questions from the audience. She is also ﬁlming online interviews with experts and people living with MS for Genzyme's website. "It's a very worthy thing to have an ongoing, dynamic dialogue about what people with MS are experiencing emotionally and physically," she says. Stowe is quick to note that she is not acting as a drug spokesperson. "I can't advocate for any drug. I'm not here to do that," she says. Instead, she will share her family's experience in the hopes that it empowers people to be their own advocates. "Taking action early is really important. With my family, it was more just survival mode, but now that new treatments are available and there are all these sources of support, it's really important to do more than just survive. Do everything you can, be as aware as you can, talk to as many people as you can."

She points to something as simple as Internet support groups like those hosted by the National Multiple Sclerosis Society. "Now you can connect with other people so easily, right from home. There's no need to stay isolated!"

Improved Outcomes Today, the conversation with newly diagnosed MS patients and their families is very different from the one Stowe's parents probably had in the early 1960s, says Fred Lublin, MD, FAAN, director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai Hospital in New York. "Before, we had little to offer. There was generally a gloomy view of the illness once diagnosed. Now we can be much more optimistic," he says. "Under any circumstances, MS can be variable, from very mild to severe, but we now feel that we can alter the course of the disease so that fewer people fall into the severe category."

In the 22 years since interferon beta-1b was approved as the ﬁrst disease- modifying drug for MS, 12 more disease-modifying medications have been approved, with one—Novantrone (mitoxantrone)—also approved to treat secondary-progressive MS. Dozens more are in development, with several in late-stage clinical trials. "A lot of exciting stuff is in the pipeline and in the lab that we hope will make things even better," says Dr. Lublin. In 2014, the ﬁrst phase 2 trials of a myelin-repair strategy to treat MS were launched. "Repairing the damaged nervous system would be an enormous paradigm shift if we were to be successful," he says.

Staying Connected MS centers like Dr. Lublin's that offer multidisciplinary care teams to support patients and family members have also grown in number and size, with hundreds of Centers for Comprehensive MS Care now recognized by the National Multiple Sclerosis Society. These centers offer a variety of treatments and services, including physical therapy and rehabilitation, nutritional support, psychological counseling, and access to clinical trials.

As Stowe knows ﬁrsthand, not reaching out is "the most devastating thing you can do. I know I did that to myself. I didn't want to show that vulnerability."

Despite her family's struggles and heartache, Stowe believes they've given her certain strengths. "I'm always trying to ﬁnd ways around obstacles. I don't believe things are impossible. And that, to me, has been a beautiful byproduct of my father's misfortune. In my heart, I truly believe that there is a solution to everything. It may not come when you want it to come. It did not come when I wanted it to for my father, but I think in terms of MS, it's coming soon."

WEB EXTRAS: For information about MS medications and tips for slowing cognitive decline, visit http://bit.ly/NN-Stowe.

Reach Out For MS Resources Multiple Sclerosis Association of America: mymsaa.org; 800-532-7667 Multiple Sclerosis Foundation: msfocus.org; 800-225-6495 Myelin Repair Foundation: myelinrepair.org; 408-871-2410 National Multiple Sclerosis Society: nationalmssociety.org; 800-344- 4867 One-Stop MS Shop

Knowledge is power. That's the mantra behind the American Academy of Neurology (AAN)'s Neurology Now Books series, published by Oxford University Press, which features titles for patients and caregivers about living with neurologic diseases. This mantra is evident throughout the latest book in the series, Navigating Life with Multiple Sclerosis, available in early September.

Hard data suggest that more informed patients have better outcomes, says Lisa Shulman, MD, professor of neurology at the University of Maryland, Fellow of the AAN, editor-in-chief of Neurology Now book series, and a member of the Neurology Now editorial advisory board, in the preface to the book.

Those looking for accurate information, evidence-based treatment options, and cutting-edge research will ﬁnd it here in this authoritative yet accessible primer, written by three top MS experts. "We have a wealth of information we've learned from people with MS who've shared their concerns and struggles. We've tried to put all of that into this book," says co- author Kathleen Costello, associate vice president of clinical care at the National Multiple Sclerosis Society and a nurse practitioner at the Johns Hopkins Multiple Sclerosis Center in Baltimore.

This practical guide is chock full of easily digested information on everything from diagnosis and disease-modifying therapies to lifestyle management, reproductive issues, and planning for the future—all in less than 200 pages. "People with MS and their families need a resource that looks at the disease from every angle, in a way that's concise," says co-author Ben W. Thrower, MD, medical director of the Andrew C. Carlos Multiple Sclerosis Institute at the Shepherd Center in Atlanta and a member of the AAN. The third co- author is Barbara Giesser, MD, FAAN, the clinical director of the University of California, Los Angeles MS Program at the David Geffen UCLA School of Medicine.

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The data are reassuring, but what may be even more comforting are the assorted patient anecdotes sprinkled throughout the book. They are used to illustrate various strategies for treating the symptoms of MS, but more than anything they serve to remind MS patients and their families that they are not facing the challenges of this lifelong disease alone.

Navigating Life with Multiple Sclerosis is available at all major booksellers and can be ordered through the AAN and Oxford University Press online stores at http://bit.ly/NN-MS-book.