NOVEMBER 2000 MEETING TOPIC

NOVEMBER 2000 MEETING
TOPIC: “CHRONIC DISEASE SELF-MANAGEMENT”

The East Bay Headache Support Group met on November 14 to hear a presentation by Aaron W. “Wally” Barger about self-management techniques to help people live success-fully with chronic disease. The meeting was held in the Ball Auditorium at John Muir Medical Center with 21 people in attendance.

Wally Barger is a graduate of the Stanford University Chronic Disease Self-Management Workshop, and is a Certified Master Trainer who has conducted training programs for hundreds of people with various chronic conditions. He is a published author on self-management techniques and chronic diseases. Since headaches are frequently a chronic condition for many people, the East Bay Headache Support Group asked Wally to present some of the information taught in the chronic disease self-management course.

Diagnosed with rheumatoid arthritis (joints) in late 1976, Wally has experienced the ups and downs of the physical and emotional effects of chronic pain. He has endured 14 surgeries and 22 admissions to the hospital for conditions such as pulmonary embolism, total knee replacement (5 surgeries), foot reconstruction (both), and gallbladder surgery. Wally was also diagnosed with systemic arthritis (soft tissue) and hypertension several years ago.

Wally told the headache support group that at least 85% of those with chronic disease share common problems. Over the past ten years the Stanford course has become a very effective program, and it is now international. The evolution of the course led to two books:

The Arthritis Helpbook, by Kate Lorig, R.N., Dr.P.H. and James F. Fries, M.D., Addison-Wesley Publishing Company, 1986.

Living a Healthy Life With Chronic Conditions, by Kate Lorig, R.N., Ph.D., et al, Bull Publishing Company, 1994.

Understanding Chronic Disease: 70% of doctors' medical practices are for chronic diseases, whereas a century ago 70% were for acute medicine.

A chronic disease (or condition) is gradual, there is no cure, and the doctor acts as a teacher/partner. The patient is a partner with his/her doctor and is responsible for management.

Conversely, words to describe an acute disease are: rapid onset, short duration, high cure rate, and the doctor selects and conducts treatment.

Chronic illness has a path—usually it is up and down. You need to track the ups and downs and communicate them to your doctor.

Persons with chronic disease need to develop three skills:

1)    Dealing with the illness
        -- Taking medications
        -- Doctor visits (more often)
        -- New experiences and diet requirements

2)    Skills to continue a normal life (chores, relationships, job)

3)    Dealing with emotions

Wally then distributed a hand-out to the audience, which included a drawing entitled “Symptom Cycle” (see attached). Wally related these skills to the symptom cycle of chronic disease, i.e., Disease (at the top), Fatigue and Tense Muscles (on either upper side of circle), Depression and Stress/Anxiety (on either lower side of circle), and Anger/Frustration/Fear (on the bottom).

Wally said the best way to start solving problems is to:

-- Address frustrations and fears
-- Confront your problems as just temporary and part of the disease process. "You can get through this."

He said, "Become a self manager—acknowledge that you are a person with chronic disease and you are the manager of that disease."

1)    Decide what you want to accomplish.
2)    Look for alternative ways to accomplish goals.
3)    Make short term plans to achieve your goals.
4)    Carry out your contract, i.e., achieve it. Don't accept "I'll try."
5)    Check results (evaluate). Try everything a minimum of 2 weeks, and preferably for 2 to 3 months.
6)    Reward yourself. It takes patience, and dealing with chronic disease builds character.

The key to self-management is problem solving. We spend time on setting up action plans.

Group exercise: Wally told the audience members to close their eyes and think about a bright yellow juicy ripe lemon. He told them to imagine biting into it and feeling the juices dribbling down their chins, and to suck the juices. Then Wally asked for reactions from the audience. One person responded, "increased saliva, lips puckered." He said, “This is a small example of what cognitive techniques can do for you.”

Cognitive Techniques:

1)    Muscle Relaxation
2)    Distraction
3)    Don't talk down to yourself. Use positive self-talk. Use own internal mechanism to talk to yourself, to get through the problem, to reflect to others that you can get on with your life.
4)    Guided imagery. Listen to tapes where people talk us through a scenario (like walking through a garden and unloading one's problems in a little box and then continuing down the path).
5)    Visualization—where you create a story.
6)    Prayer and meditation. This is very effective and a powerful resource.

Other techniques:

Exercise: Strive to exercise for 20 to 30 minutes 3 to 5 times per week.

1) Flexibility, 2) Strengthening exercises, 3) Endurance (aerobic—biking, swimming, walking). Wally said for many people this would be maybe 20 feet—not a great distance. The important thing is to at least get out there and try to walk a little bit.

Communication: Another important aspect of self-management for people with chronic conditions is enhancing your communication skills. This is achieved in 3 ways:

1) With your doctor:
        -- Maintain a diary and take it with you to your doctor visits.
        -- Prioritize your list of questions for the doctor.
      -- Could send the list ahead to the doctor.
        -- Take notes during your doctor visits, or bring someone with you to help take it all in.
        -- Follow your doctor's directions.

2) Don't have an accusatory, threatening view when talking with your caretaker or others.
3) Avoid the accusatory “you” when talking with co-workers or family.

Action Planning:

1)    In the beginning focus on something you really want to do. Later you can take on more demanding tasks or goals.
2)    Your goals have to be reasonable, not an unrealistic goal like running five miles when the most you have done is run a mile in the last six months. Start small and build to your ideal.
3)    Goal needs to be behavioral-specific: If your goal is to lose twenty pounds, a specific         behavior is to cut down on snacks.
4)    Answer questions:

        -- What you'll do
        -- How much
        -- When
        -- How often
5)    Set your confidence level: How realistic is your goal?

Practice a breathing exercise: Wally told the group that most people with a chronic condition don't breathe properly, and he then proceeded to demonstrate the correct way to breathe—Place one hand on your abdomen just below the breastbone and the other hand on your chest. Breathe in through your nose and breathe out through your mouth. The goal is to have the stomach rise. Wally said, "Let out more than you let in."

Breathing properly like this seems to put more oxygen into your mind. Older people feel more stimulated when they practice this type of breathing.

Wally commented that "Chronic conditions are like a path: There are smooth and rough spots, and ups and downs."

One must do both physical and emotional work.

Wally discussed the importance of problem solving. He said this gave him relief and helped his own attitude. He said "a good self-manager sets goals and problem solves."

Set your goal, identify a solution, test, keep looking for a solution (though, sometimes there is no solution). This all takes time.

Wally Barger concluded his presentation on chronic disease self-management and asked for questions from the audience.

Questions and Answers

Dr. Stein, medical advisor for the East Bay Headache Support Group, said that sometimes he tries to encourage a patient to go to a support group, but that the patient replies, "It's bad karma to see people worse off than me." Wally stated that people have different ways of absorbing material. He suggested that perhaps the information could be incorporated into a video or put on the Internet so people can do it on their own.

One member of the audience mentioned that she didn't want to talk about headaches, even to Dr. Stein. Wally told her to think: "You're not abnormal. You're not any less of a person because of the disease. Talk to yourself so you feel good. Learn to communicate to others about your condition." Wally said he wrote an article entitled “Being Disabled But Able.”

He added, "Acknowledge yourself—have people take you the way you are." He has found that some people who were close to him have pulled back.

"A lot of people don't like to reveal themselves," Wally told the group. “Management of your daily life is the most critical part of living with chronic disease. Seeing the doctor is a small part of it. Realize these are problems we all share." Also he said that the trainer behind the lectern at the Stanford course doesn't give answers—answers come from the group.

Comments from the audience were then heard: Janet Young commented that she doesn't want to write her Personal Profile for the group's newsletter until she has a success story to relate. She feels a sense of failure and frustration every time she has a headache, because she's trying lots of things.

Wally responded to Janet's comment with the statement that he has flare-ups of his chronic diseases. He never thinks it will never happen again. He plans strategies to make it better next time to cope, and he tells himself funny stories to make himself laugh. Wally also tries to anticipate down times, so he can ease into the flare-up.

Donna Johnson volunteered that she is in denial so then doesn't take her medications until it's too late. And then she feels guilty and asks herself, "What did I do to cause this headache?"

Wally said to maintain a diary, reflect on how you felt when ill. Note any patterns.

Reg Fong asked Wally to give more information about the Chronic Disease Self-Management Workshop.

Wally related some background about the course: Twenty years ago, Kate Lorig, R.N., and a Ph.D. candidate in health education at Cal Berkeley, came to Stanford University to develop and research an educational program that emphasized self-help skills for people with arthritis. Her work led to The Arthritis Helpbook and the self-management course. The book which discusses all we learned tonight is entitled Living a Healthy Life with Chronic Conditions.

He said that some people with migraine headaches have been in the Chronic Disease Self-Management Program. Many were referred by their doctors, but others signed up after hearing about it by word of mouth.

The Chronic Disease Self-Management Program is usually given at hospitals and the class meets 2-1/2 hours per week for 6 weeks. To find out more information about this course, or to sign up for one, call the Stanford Patient Education Research Center at 650-723-7935 or visit their Web site at www.stanford.edu/group/perc/cdsmp.html or try majordomo@lists.stanford.edu.

Wally said this program is currently taught at the following Kaiser Permanente facilities: Shadelands Walnut Creek, Richmond, Oakland, and Redwood City. Janet Young asked if Kaiser classes are open to non-members, and Wally answered that they aren't open to non-members now, but it is needed. He suggested calling the Kaiser Health Education Department in Walnut Creek and ask for Ms. Pam Valois. Her phone number is 925-295-5552.

The intention of the East Bay Headache Support Group is to provide information and resources. It does not provide medical advice, which should be obtained directly from a physician.