When Virginia Cofer was diagnosed with multiple sclerosis (MS) in 2013, she was shaken to her core. “It rocked my world,” says the 54-year-old Chicago resident. “It made me wonder what I would do and who I was now.”
For years she struggled with those questions, and as her symptoms got worse, so did her self-doubt. Was she really a respected and accomplished professional? What would she do without her beloved outlet of long-distance cycling? She found herself increasingly focusing on loss—of her profession, her passion, her identity—and mired in despair and hopelessness.
Casting about for answers, she attended a four-day workshop called Can Do Multiple Sclerosis, sponsored by the National MS Society and Can Do MS, formerly the Jimmie Heuga Center for Multiple Sclerosis, in Denver in 2016. The workshop is designed to help people improve their perceptions of their lives.
Over the four days, Cofer learned to apply the skills she had honed as a project manager in the toy industry to her disease. “In my job, I worked with a design team and an engineering team. I managed a timeline, schedules, and budget,” she says. She began to see how that mentality—building and relying on a team—could help her cope with her condition. “I now approach MS the same way. I've put together a team of players—my neurologist, the MS Society and its resources—and learned that I can lean on them more often.”
She also found new ways to channel her passion for exercise. Through the National MS Society, she discovered the Chicago-based Shirley Ryan AbilityLab, which offers low-cost, specialized physical therapy services. By then, her poor balance prevented her from cycling, so AbilityLab suggested rock climbing and turned her on to a local adaptive climbing group. She now climbs regularly at indoor gyms in Chicago and has gone on two outdoor rock climbing trips.
She's also trying other sports such as archery, horseback riding, and dragon boat racing. An unexpected consequence of these activities has been a new sense of resolve and courage. “I went to a new climbing gym recently, and I was just like, ‘Okay, let's do this,’” Cofer says. “Nothing scares me anymore.”
Fred Davis, 58, was in his mid-forties when he began experiencing seizures. He was eventually forced to retire from his job building plastic injection molds. Soon after, he started noticing problems with his memory. “If I didn't write something down, I couldn't remember it. I left notes for myself everywhere, and it was a mess. My wife would ask me what I'd done that day, and I couldn't remember,” he says.
He would also “lose himself” while reading sports news on the computer, wasting entire mornings. “I wasn't getting anything done, which frustrated my wife.” The combination of worsening memory and wasting time strained the marriage and interfered with Davis' ability to manage his epilepsy.
After hearing about a program at Dartmouth College designed to help people with neurocognitive deficits, Davis signed up. He was assigned a memory coach, who taught him how to become more organized. “I keep a notebook with me instead of leaving notes all over the house. My wife writes a list of priorities on the calendar, which I look at every morning.”
When he sits down to read sports news online, he sets a timer. “Now I only allot myself an hour every morning to be on the computer,” he says. These strategies have improved his memory and his marriage.
A POWERFUL CONCEPT
Whether they know it or not, Davis and Cofer are each practicing something called self-efficacy—the belief that you have a degree of control over conditions that affect your life. The concept, coined and developed by Stanford University psychologist Albert Bandura, PhD, is integral to achieving goals and dealing with challenges, including living with a chronic neurologic disorder.
Diane Cook, who was diagnosed with Parkinson's disease on her 65th birthday in 2008, first heard the term when she attended the World Parkinson's Congress in Glasgow in 2010. She was attending a lecture by Parkinson's disease expert Lisa M. Shulman, MD, FAAN, a neurologist at the University of Maryland and a member of the Neurology Now editorial board, who posed the following question: “Does anything you do make a difference in your outcome with Parkinson's disease?” Dr. Shulman's answer was a definitive “Yes!”
“Her research suggested that self-efficacy was the most important determinant of quality of life for people with Parkinson's,” recalls Cook, who lives in Denver. “It was the first time I'd ever heard the term, and it was a flash of insight.” Looking back on her own reaction to her diagnosis—learning all she could about the disease and becoming a Parkinson's advocate—Cook realized she'd been practicing self-efficacy all along.
Cook was so taken with the idea—and so convinced of its effectiveness—that she turned her efforts toward building self-efficacy programs for people with Parkinson's disease. In 2013, she launched a pilot program with the help of her neurologist, Rajeev Kumar, MD, of the Rocky Mountain Movement Disorders Center, and a grant from the Colorado Neurological Institute. The nine-month program, called PD SELF (Self-Efficacy Learning Forums), consists of nine modules over the course of nine months. Each addresses a specific dimension of self-efficacy such as setting goals, managing negative emotions, and overcoming obstacles.
Two groups of participants went through the initial PD SELF pilot program. The results were promising: Even as patients' physical symptoms worsened, their perceived ability to manage their disease improved, as did their confidence and hope for the future. Based on these findings, the Parkinson's Foundation helped Cook launch a national PD SELF pilot program (http://bit.ly/PD-Empower-Newly-Diagnosed) in May 2016, with 10 sites across the country: two in Arizona (including one in English and one in Spanish), three in Colorado, and one each in Florida, Michigan, Pennsylvania, Texas, and Virginia. “This program helps people identify resources and tools early on in their journey with Parkinson's disease,” says Megan Feeney, MPH, the Foundation's manager of community engagement.
For 59-year-old Betsy Mathies, who was diagnosed with Parkinson's in 2012, the pilot program helped shift her perspective. “It made me feel like, hey, I can live pretty well for pretty long if I learn how to think about things in a certain way, recognize how important exercise is to me, and find support in a community. Learning that so soon after my diagnosis made me feel encouraged and not like my life was over.”
Mathies was impressed with how comprehensive the program was. “It was like taking a college class for a year.” Participants heard from guest lecturers about how to be more of a self-advocate, how to navigate complicated medication regimens, and how to deal with difficult non-motor symptoms. “As we learned more and understood how to set goals in these areas, you could see our anxiety fade. It was magical,” says Mathies.
Memory problems like the ones Davis experienced are common for people with epilepsy, who may forget to take medication or schedule doctor's appointments. They may also have trouble paying attention and focusing. To help patients manage these memory deficits, Barbara C. Jobst, MD, FAAN, professor of neurology at the Dartmouth Geisel School of Medicine, developed a program called HOBSCOTCH (HOme Based Self-Management and COgnitive Training CHanges Lives; http://bit.ly/Dartmouth-HOBSCOTCH).
HOBSCOTCH combines the principles of problem-solving therapy with a memory training and strategy program originally created for cancer survivors experiencing neurocognitive deficits. Participants like Davis are assigned a memory coach, who consults with them once a week for about 45 minutes over the course of eight weeks. They learn the basics of memory, normal memory problems (which include minor lapses like forgetting where you just put your glasses), and how seizures can affect cognition; self-awareness regarding what affects individual memory and attention; strategies to compensate for memory and cognitive deficits, like list-making; and problem-solving skills that can be applied in real-life situations. The first and last visits are in person; all other sessions are conducted over the telephone.
In a randomized trial published in Neurology in 2016, HOBSCOTCH participants showed significant improvements in their overall quality of life.
Dr. Jobst's team has since trained coaches at epilepsy centers in Vermont, Massachusetts, and Maine, where they have launched spinoff programs. HOBSCOTCH is also partnering with the Epilepsy Foundation to establish the program in other states, including New York, Texas, and Illinois.
“This is an intervention that doesn't have any side effects,” says Dr. Jobst. “We shouldn't be so quick to prescribe a pill when behavioral interventions, if they're done right, can be as effective.”
FINDING A NEW FOCUS
While they may not use the specific term “self-efficacy,” several organizations for people with other neurologic conditions have their own programs that focus on developing confidence in handling daily challenges.
The National MS Society, for example, developed the Everyday Matters workshop series, which is based on the principles of positive psychology.
Through in-person meetings, as well as a workbook and videos available on the Society's website, the workshop series teaches participants to adjust the way they look at their lives and their disease. “We talk about how we can't change reality through sheer force of will alone, but we can change how we process and think about and react to things,” says Nicole Sammartino, senior manager of program implementation and engagement at the Society. “We get people thinking about how to live their best life, rather than focusing on their challenges and limitations.”
Through its Can Do Multiple Sclerosis seminars, like the one Virginia Cofer attended, the National MS Society, in partnership with Can Do MS, provides regular webinars, self-paced interactive online education, and intensive in-person workshops.
Self-efficacy is at the core of the mission of the National Spasmodic Dysphonia Association (NSDA), says NSDA board president Charlie Reavis, who was diagnosed with the neurologic voice disorder that involves spasms of the vocal cords more than 15 years ago after a 40-year career in corporate communications. “This condition has a tremendous impact on people's careers and their personal lives, and people get discouraged and depressed,” Reavis says. “We have more than 75 trained local group leaders who run support groups that help people learn to take control of their situation.”
Reavis recalls one woman who came to a support group he attended. “She had started flying lessons prior to her diagnosis, but the disease affected her so much, personally and emotionally, that she shut down and quit flying,” he says. “After making connections through the NSDA, she realized that the disease hadn't changed who she was as a person and what she wanted to accomplish. So she started flying again and eventually got her pilot's license.”
In some cases, self-efficacy programs may improve the progression or outcome of the disease itself. If, for example, people with epilepsy improve their memory and organization, they may be more likely to take their medication on schedule and achieve better seizure control. But even when these programs cannot alter the course of a degenerative disease, their benefits—like a sense of optimism and self-confidence—are noteworthy.
Virginia Cofer says she doesn't even think about fear anymore. “I've got MS and there's nothing scarier than that, so I can handle anything!”
Can't find a self-efficacy program near you? You can still work to employ the principles of self-efficacy in your daily life. Albert Bandura, PhD, identified four main components to self-efficacy:
1. MASTERY. This is achieved by setting goals and reaching them. Talk with a therapist or your neurologist about realistic goals that you'd like to set in your daily life and strategies that you could employ to achieve them. Success reinforces the belief that you have power over the conditions that affect your life.
2. VICARIOUS LEARNING. Seeing others in a similar situation succeed helps give you confidence that you can do it too. Online or in-person support groups are great ways to find people who've been there and can help you see that obstacles can be overcome. You can find groups either through your neurologist's office or medical center or through advocacy organizations that are focused on your specific condition.
3. POSITIVE REINFORCEMENT. Feedback and encouragement—from peers, family members, and your clinical team—can strengthen your belief that you have what it takes to succeed.
4. PHYSIOLOGIC FEEDBACK. Your body sends signals that either build or drain your confidence. When your body is feeling stressed, tense, and anxious, so is your mind—and vice versa. Practices like yoga, tai chi, and meditation can help reduce tension in both your body and your mind.