Photo by Matt Roth
Will Clayton knows all too well the physical and psychological toll of a chronic disease.
Diagnosed with muscular dystrophy three decades ago, Clayton, 58, of Fairfax, retired on disability eight years ago and uses a wheelchair scooter and a specially equipped van.
"I still have depression states from time to time," said Clayton, who also has diabetes. But he no longer sees himself as mostly reacting to his problems. He feels proactive, often starting sentences with, "As a self-manager, I … " And he has learned how to handle the bleak periods.
For his sense of empowerment, Clayton credits You Can! Live Well, Virginia! The six-week workshops give people the information and tools they need not to just deal with chronic conditions, but to thrive in spite of them.
For example: Someone who has trouble remembering whether she's taken her medication learns to keep them on one shelf before she takes the day's dosage and to move them to a different shelf afterward. Someone who feels depressed learns to recognize negative thoughts and to substitute positive ones. "I can't do anything" becomes "I may not be able to do everything I used to do, but there are still lots of things I can do." Someone suffering stress learns to practice deep breathing and meditation.
"The class teaches you that there are more things you can do," Clayton said.
Clayton felt isolated before, but he learned by taking the workshop that others are in the same boat. He had dreamed earlier in life of teaching but thought his health conditions had closed the door. Leading the workshop has given him a sense of renewed possibilities and lifted his mood, he said.
Developed by Stanford University's School of Medicine as the Chronic Disease Self-Management Program, the workshops are offered in nearly every state, usually free, in many foreign countries and online. Generally run by state departments of aging, the workshops go by various names, including Living Well With Chronic Conditions, Healthier Living, Living Healthy, and Help Yourself to Health. Stanford's Patient Education website lists organizations licensed to offer the Chronic Disease Self-Management Program, state-by-state.
In 2 1/2-hour live sessions once a week, participants learn to:
- Eat better and exercise smarter.
- Handle fatigue, stress, depression and isolation.
- Communicate effectively with family, friends and health care providers.
A pair of facilitators leads each workshop — usually a trained health professional and a layperson who can speak from experience about chronic disease. The pairing makes all the difference, participants and leaders say.
"People see that someone like them is living successfully with a chronic condition," said April Holmes, coordinator of prevention programs for older adults in the Virginia Department for the Aging. "It can be inspirational."
After Clayton took the workshop last summer, he trained to help lead sessions as a volunteer.
"When Will starts to talk, you can feel the whole room soften," said Colleen Turner, program coordinator for Fairfax County's You Can! Live Well, Virginia!, who leads workshops with Clayton.
"You can feel everyone saying, 'Ahh, I get how this is going to be. It's going to be real.' "
It's definitely not just another support group, Turner and others emphasize.
Trainers adhere to a script, and participants use a book written for the program. Participants often help each other solve problems. A key component is setting a weekly action plan and reporting on progress.
At a recent session in Alexandria, about a dozen older people brainstormed ways to identify and fight depression, learned tips on keeping a positive attitude, discussed ways to remember to take medications, and relaxed through a guided-imagery exercise.
Reporting on her action plan, one woman said she hadn't done the sewing as she'd hoped, but she did find five pieces of fabric she'd bought last year. Another confessed she'd succeeded in eating breakfast only two mornings, not every day. Others made it to the gym three or more days, cleaned out the garage, got rid of old books and bookcases. Each person then set an action plan for the next week.
You won't find slick PowerPoint presentations in the workshops. Trainers handwrite on poster paper.
"It's personal," Turner said. "It's all about trust."
In Virginia, Soo Yee, a community health specialist with Fairfax County Health Department, recently led a workshop for Koreans in their native language in Centreville. It was a big step for a community that traditionally does not open up about sickness or weakness, she said.
"I really didn't think it would go well," Yee said. "It's like serving someone sushi and giving them a knife and fork. We were giving them tools, but I didn't think they'd want to 'eat' with them."
But Yee and Young-Soo Kim, 76, the volunteer trainer for the Korean workshop, were thrilled at the way participants shared their experiences. And those tools? They do work, Kim said.
"I needed it myself," she said. "The action plan is really a good thing. Everybody knows you have to walk and eat the correct food, but it's not easy to control yourself. That's where self-management comes in."
After the success of the Korean workshop, Turner is reaching out to the Muslim and Vietnamese communities.
Kate Lorig is director of the Stanford Patient Education Research Center and founder of the chronic disease workshops. She also is lead writer of the book participants use, Living a Healthy Life With Chronic Conditions.
"People spend 99 percent of their time outside the health care system — and what they do outside largely determines their quality of life," Lorig said. "This prepares them for the 99 percent."
Dozens of follow-up evaluations have found that participants report less fatigue, shortness of breath and pain — and they get more exercise and feel generally better than those who have not participated, Lorig said.
"They were doing more things they want to do," she said. "It can be pretty exciting."
Eight in 10 older Americans live with one chronic disease, and one in two live with two conditions or more. In a time of soaring health costs, it's also significant that participants report fewer days in the hospital and fewer outpatient visits and hospitalization. Many results last for three years, studies have found. The program reports $4 saved for every $1 in cost.
Virginia received $1 million for the community-based workshops from a $27 million grant to the states from the American Recovery and Reinvestment Act. The two-year grant is slated to end in March 2012.
There is also an online version of the Chronic Disease Self-Management Program called Better Choices, Better Health available for free.
The online program works much the same as community workshops. Online participants are in groups with two facilitators, but they do the activities at their own pace and on their own schedule. The online version is supported by foundation grants.
Participants online tend to be younger — 56 or 57 on average — than those in community groups, who are 67 or 68 on average, said Jay Greenberg, senior vice president of the National Council on Aging, which sponsors Better Choices, Better Health.
"Some people were skeptical: Will they really engage online as they do in a room? We find people online engage more. They're identified with just a screen name that they provide, and they tend to share more details about their life and more about their conditions," Greenberg said.
"I think it's an evidence-based version of Alcoholics Anonymous meets Weight Watchers," he said. "With Weight Watchers, there's a group of folks who are pretty systematic about what they're doing, and there are instructors who have lost weight. Alcoholics Anonymous meetings are not led by nurses and doctors but by people who have had alcohol problems themselves. There's a lot of bonding."
Some people will be happier online, and others will want the personal connection.
For Clayton in Fairfax, the personal connection in the classroom was important.
"I got cut off from people," he said. "Chronic illness gives you too much time to think. You're constantly making comparisons with what you used to be — and asking, 'Why can't I do this or that anymore?' "
The workshop helped him to see the possibilities, rather than the obstacles.
"It's never a matter of getting a book and a wealth of information," said Clayton. "It's how to deal better with what you have."
Marsha Mercer is a freelance writer on health and public policy issues.