Seattle residents Sven and Bernadette Couch, a married couple in their 40s, have many things in common. Both are the third of five kids in their families, and they like to share a laugh over the Comedy Central channel. Both have a passion for the arts and regularly attend St. Andrew’s Episcopal Church. They also both suffer from Multiple Sclerosis (MS). And the Swedish MS Center is there for them every step of the way. Sven and Bernadette (who goes by “Bernie”) each noticed the first symptom of MS — a chronic disease that affects an estimated 400,000 Americans — several years before they met, while engaging in a favorite activity: running.
For Sven, the initial sign came during his first year as a law student at Syracuse University. “While running with a friend one day, within the first mile, I started seeing double,” remembers the former University of Washington defensive tackle. “I was worried that the double vision could mean a serious brain tumor or neurological disorder.” He made an appointment with an optometrist, who referred him to a neurologist. That doctor administered an MRI brain scan. The next day, on October 5, 1989, Sven was diagnosed with MS. He was 25 years old and devastated. “My father was a physician, and I knew there wasn’t a cure for MS,” he says. “It was tough. People tried to understand, but it’s a very isolating situation.”
Bernie’s first indication that she had MS was a feeling of weakness in her left leg while running around Green Lake. “All of a sudden, I was dragging my leg,” says Bernie, then 27 and employed at the Honey Bear Bakery. “At first, it just happened when I ran. I’d start out feeling pretty good, but before long, my left leg would get heavy.” In January 1995, Bernie’s primary-care physician referred her to a neurologist. The doctor gave her an MRI that, like Sven’s, showed she had MS. “When I got the news, my first thought was: ‘I’ll get my muscles strong and work on my stamina, my endurance,’” Bernie says. “I was hopeful I would get better.”
Sven and Bernie have spent the years since their diagnoses adjusting to the wide range of symptoms that can come with MS, yet maintain-ing a positive attitude despite living with a chronic disease. They receive support every step of the way from a team of caregivers at Swedish’s MS Center, which is opening a new, consolidated facility at Cherry Hill in April 2012. The Center’s emphasis is on wellness and helping patients maintain the highest quality of life.
The first few years were especially tough, say the Couches. Sven chose to finish law school — a near-impossible feat, given his worsening symptoms. “The first two years, my symptoms were relatively mild [including double vision, oscillating eye movements and muscle spasms], but the third year was much worse,” he says. That year, walking became extremely difficult, though steroids offered some relief. The stress of law school exacerbated his condition. “I was so tired, I could barely function,” he recalls.
In addition to being troubled by her left leg, which caused difficulty walking, Bernie began struggling with her balance. On the advice of her boss at the bakery, she tried treating her MS with holistic approaches — including a dairy- and wheat- free diet and vitamins — in addition to taking a host of traditional drugs, with varying success.
One day at the Honey Bear Bakery in 1996, fate intervened when Bernie and Sven met. Bernie remembers: “My boss said, ‘See that guy over there? That’s Sven, and he also has MS. You should meet him.’ I went to talk to him, and we became good friends.” The couple found they shared many mutual interests, such as a love of comedy shows. “We like to laugh,” says Bernie. “Comedy gives us a break.” Over time, friendship blossomed into love as the couple supported each other in coping with their disease. Bernie has encouraged Sven to use different tools that help him with his mobility, such as a walker and leg braces, both of which she uses — and Sven discovered that “they help a lot.”
“When we met, we were both lost,” reflects Sven. “I used to love to ski and hike,” adds Bernie, “but now I can’t ski, I can’t hike. A lot of our friends moved on, because we couldn’t do the things we used to.” “The beauty of finding a partner like Bernie is that we share the same situation and understand what each other is going through,” says Sven.
In 2008, the couple exchanged nuptials in a small ceremony at the Salish Lodge near Seattle, surrounded by close friends and family. The Couches have built a life together in which they support each other through the physical trials they face. Sven — a published author of many poems, who has also written his memoir about living with MS — spends his time writing, while Bernie is a skilled watercolor artist.
“With MS, you have to go with the flow,” says Bernie. “We’re always looking for ways just to have fun.”
Sven and Bernie regularly visit Swedish’s MS Center to monitor and treat their condition. The couple shares the same physician — the Center’s medical director, Jim Bowen, M.D. — and attend a support group together, in which they find comfort through connecting with fellow MS patients. They also benefit from the robust physical therapy program and exercise gym at the Center.
While medications and other treatments offer some relief from their symptoms, both Couches still dream of the day researchers find a cure.
“Since my diagnosis, I’ve asked the doctors the same question: ‘When is there going to be a cure?’,” says Sven. “Ten years ago, they weren’t sure. Today, they are far more optimistic. A cure is getting closer, and that’s wonderful.”
The Couches are among 2.5 million people worldwide with MS — an unpredictable disease of the central nervous system that essentially causes the body to attack itself. The disorder damages the myelin, or protective material, that surrounds the nerves, resulting in an interruption or disordering of the transmission of nerve impulses. This “short circuiting” causes symptoms that vary widely from person to person, but often include loss of vision, numbness or tingling, weakness, loss of muscle coordination, fatigue and cognitive impairment.
Explains Dr. Bowen: “With MS, a person’s immune system attacks his or her own nervous system. When it attacks, it causes damage to a particular location and to multiple areas over time. MS has more symptoms than any other disease.”
Just as symptoms vary, so does the frequency of attacks. While one patient might experience symptoms for a short period and then remain symptom-free for months or even years, another patient may have symptoms that steadily worsen over time.
Researchers aren’t sure what causes MS. One theory is that a patient’s white-blood cells, which are meant to fight infection or disease, are misdirected to target and attack the body’s own cells. These attacks are thought to cause inflammation in the central nervous system, which damages the myelin and, ultimately, the nerves. Another theory is that MS develops in genetically susceptible people as a result of an environmental exposure in childhood, perhaps a childhood virus.
Researchers do know that some people are more susceptible to MS than others. For example, the disease strikes women three times as often as men and is most common among people of Northern European descent.
It’s not entirely clear why, but the Pacific Northwest has one of the highest rates of MS in the world — about 12,000 cases, including about 8,000 cases in Western Washington. This means about 1 out of every 125 people in our community either has the disease, or has a parent, child or sibling with the disease. Doctors think the elevated rate of MS in our area might be due to a combination of genetic predisposition and environmental factors. The disease’s prevalence here makes having a comprehensive local center specializing in its treatment essential.
One of the most disheartening things about MS is that it usually strikes people in their prime — typically between the ages of 20 and 50, with 30 being the average age of diagnosis. “The impact of this disease on society is significant because it hits people during what would otherwise be their peak earning years and at a time when many are involved in building their families,” says Dr. Bowen.
The prognosis the newly diagnosed receive can be difficult to hear: Within 10 years of the first symptoms appearing, 50 percent of patients are unable to carry out work or household responsibilities. Within 15 to 20 years, 50 percent of patients are unable to walk unassisted.
In addition to suffering from physical and cognitive symptoms, many patients also struggle with anxiety, depression and other emotional issues as a result of their MS. Just as the disorder affects nerves throughout their bodies, it also impacts virtually every aspect of their lives.
Setting the benchmark for MS care
Swedish is already a national leader in treating patients with MS. As part of the medical center’s renowned Neuroscience Institute, which was established in 2004, the Swedish MS Center offers a multidisciplinary team of MS-specific caregivers, including neurologists; neuro-ophthalmologists; physiatrists; social workers; a psychologist; a speech therapist; and vocational, physical, occupational and cognitive-rehabilitation therapists. Because of the impact of MS in the Northwest and Swedish’s commitment to serve its community, plans were made for a new, $7.8 million Center, which would be one of the largest of its kind in the nation. Construction on the facility began in November 2011, thanks to a generous outpouring of contributions from the philanthropic community. Staff and patients alike have been eagerly awaiting the new Center’s April 2012 opening. With the additional space and resources, the number of MS patients treated at Swedish is expected to triple, to 6,000.
The new Center — spanning 11,700 square-feet with complimentary valet service for easy access for those with limited mobility — consolidates many of the services currently offered, including physical therapy, gym space and educational classes. Before, patients often had to visit multiple locations to fulfill all of their needs.
“[At the old Center], many of the components we offered were dispersed throughout the campus, decreasing efficiency and patients’ awareness of what programs were available to help them,” says Dr. Bowen. “Having these components combined under one roof makes it easier to care for patients as an integrated team.”
At the new Center, patients have access to: – Nationally recognized MS specialists and pro- viders for diagnostic and clinical care – Exercise and physical-fitness programs – Clinical research and clinical trials participation – Educational resources for patients and families – Psychological, emotional and social support services
“Our team cares for and supports the entire person: the physical needs, emotional needs, vocational needs, financial needs, spiritual needs and social needs,” says Dr. Bowen. “The Center is a place to provide care, offer resources and foster community.”
According to Dr. Bowen, when most people think of MS, they think of motor dysfunction. But it’s the progressive mental fatigue that often causes the most difficulty. “Cognitive impairment can cause families to be ripped apart, because the person isn’t the person he or she used to be,” says Dr. Bowen. “By far the best way to deal with this is to have the patient work with specialists. Someone with physical challenges needs to see a rehab specialist, someone with personal-relationship problems needs to see a psychologist, someone with work problems needs to see a vocational counselor, and so on.”
One of several specialists patients have access to at Swedish is Angeli Mayadev, M.D., an MS-specific rehabilitation physician. “My work focuses on patients’ symptom management,” explains Dr. Mayadev. “With certain patients, we work with them from both a neurological perspective and a rehabilitative perspective. Common physical problems include mobility challenges, leg spasticity and weakness. These problems can be treated with [approaches including] oral medicines, injections and physical therapy. We have a team we work with, including myself, that makes a treatment plan specific to an MS patient’s needs to improve his or her quality of life.”
The question the team focuses on answering for each patient, says Dr. Mayadev, is “What can I do to improve my ability to continue doing what I want to do?”
Wellness and research are a focus
A highlight of the new Center is an expanded wellness program — one of several services MS patients won’t find elsewhere in the Northwest. “Our MS Center is unique in that it really emphasizes wellness — and by wellness, I mean people’s ability to live life well, despite having a chronic illness,” says Dr. Bowen. “At Swedish, we believe overall wellness encompasses the physical, mental and social parts of a patient’s life.”
The new Center includes a gym that is outfitted with exercise equipment specifically designed for people with MS, including recumbent equipment, power-assist devices, weight-suspended treadmills and electrically stimulated machines. Exercise instruction, including yoga and music-and-movement classes, and nutrition guidance further encourage healthy habits.
Additional personalized wellness services include physical and rehabilitative therapy pro- grams, smoking-cessation counseling and classes, and multiple support groups. An outdoor terrace offers not only a peaceful respite space, but a working therapy space with different terrain — including grass, gravel and concrete — allowing patients, protected by safety harnesses, to work on improving their gait.
Another important component of the new Center is research. Swedish already has a robust MS research program — the largest in the Pacific Northwest — with researchers currently participating in 24 studies designed to improve the care of people living with MS, including studies investigating new treatments, new methods of diagnosis, better ways of monitoring the disease and new approaches to improve physical function. These efforts can now be expanded, due to the Center’s increased infrastructure dedicated to research, as well as the greater number of patients it will treat.
“Research will be fully integrated into the new Center,” says Dr. Bowen, noting that more studies mean more patients will have early access to clinical trials for new, potentially beneficial therapies.
Future plans for Swedish’s MS Center include the introduction of a telemedicine program for patients without access to Cherry Hill, and the eventual addition of new staff members, such as additional MS neurologists, a neuro-psychiatrist, an educational specialist and a recreational therapist. According to Dr. Bowen, Swedish currently has three neurologists dedicated to MS, but the new Center might eventually have as many as 10.
A team effort
For the Couches, the new MS Center promises to continue offering them what Sven describes as “a balanced approach to our wellness.” He says, “The Center’s focus on aspects other than medica- tion, including rehabilitation and wellness, provides us with comfort and hope for a better future.”
The team of caregivers the couple works with at Swedish, adds Bernie, “has become like family.”
This sentiment isn’t surprising, given the passion Swedish’s MS team brings to their work. “All of us work hard every day because we want to help people struggling with this debilitating disease,” says Dr. Mayadev. “We want them to feel supported by us.”
“The Couches are a really wonderful couple,” says Dr. Bowen. “I’ve been struck over the years by how well they have done, despite their physical limitations. They’re very supportive of each other.”
He continues, “MS is a disease that lasts a lifetime, until research advances to a point that changes this. As a result, we’ve built a Center that is not just a place to see your doctor, but a place where the doctor is only a small part of a patient’s visit. A true MS Center must be a place that addresses every aspect of living with MS.”