ATHENA

Yes! I did it. I was moved to action! Remember in our last issue of Athena, we invited you to pick one thing you'd like to improve about your health and look at it from various angles, such as what you would gain from not changing your behavior, and what you would lose if you did change. I chose to work on my pathetic social life. I have one very dear friend whose invitations to party I constantly deflect with the excuse, "Sorry, I have to work." The word around the office is, "Peg, get a life! " So I did.

I invited my friend, her whole household, some other friends, and some of our attendants' friends over for Thanksgiving dinner. It was pot luck, of course, and required a shopping trip to make sure I had more than two plates that matched. What a magnificent convergence of good will. We shared grace in English, Spanish, and Sanskrit; we had guests from age 6 months to 68 years; we heard stories of travel from Chile to France to Egypt; and we ate a feast of low fat, natural, healthy dishes. Few things are more spiritually fulfilling than a house full of laughing, well-fed guests.

Then I did something even more socially risky. I joined a kite club! There was a wonderful kite festival in Galveston with more than a hundred magnificent box kites, stunt kites, parafoils, and wind socks flown by folks from all over the country. My tiny collection is nothing by comparison, but nonetheless fun. I watched a fellow do kite ballet in the sky. BB, my service dog, couldn't figure out if these strange birds were chasing her or if she should chase them! I found out that a colleague of mine at Baylor is a kite master. He is developing a one-handed, low effort control stick for dual cord kites that can be used by those of us with limited arm strength. The festival was a wonderful outdoor experience. The weather on the beach was in the mid-70s with a moderate, cool breeze. The sand was hard-packed and perfect for wheeling. I saw not one beeper, cell phone, or laptop computer. I went home with wind-blown hair, a slightly burnt nose, a few new friends, and an overwhelming feeling that I can do this.

No, I never managed to go swimming in my neighbor's paradise pool. It would be just too much trouble all around. But I still have my attendants do 10 minutes of range of motion exercise on my arms and legs every morning and every night. I've made it part of my routine. It's not the most I can do, but it's better than nothing. Someday the opportunity will arise to do more.

Yes, I still reach transcendental bliss by way of chocolate. One of my guests brought chocolate raspberry mousse for Thanksgiving and I thought I was going to die in ecstasy. It's okay; I don't indulge that often. Remember, the whole point is moderation and balance, as Laurie Gerken Redd emphasized in her article in issue 2, allowing occasional indulgences. So, I reached a point of action toward my goal and I feel good about it. Social isolation is a killer for women with disabilities. It makes us depressed and inactive, assaults our self-esteem, and leaves us much more vulnerable to disease and abuse. There is something we can do about it, in little steps or big steps. It just takes some creativity and willingness to take risks. But by my estimation, the balance of taking action is toward the positive for my social, mental, and physical health.

In the next issue of Athena, we will talk about how to stay in action. Let us hear your stories about your journey toward wellness. Check out the last page for our national toll-free phone number, fax, e-mail, and the new "Messages from Friends" page on our web site.

The Rewards of Exercise: A Story of Three Friends
by Wendy Wilkinson, Julie Collins, and Pam Mackie

Wendy Wilkinson, Julie Collins, and Pam Mackie, three close friends living with spinal cord injury, frequently enjoy working out together in the gym.

Wilkinson works as an attorney and serves as project director of the Southwest Disability and Business Technical Assistance Center in Houston,Texas. She is also an Assistant Clinical Professor in the Department of Physical Medicine and Rehabilitation at Baylor College of Medicine. Collins works in the accounting department at Smithereens Hand Painted Glass in Houston, Texas. Mackie, who has a bachelor of science degree in psychology, volunteers at Butler and Binion, a law firm in Houston, Texas, which specializes in disability issues.

Tell me about your exercise program. What do you do to keep physically fit?
JC: I have a personal trainer that I meet twice a week, and we have a program that we follow. One day we'll work on the mat, the next time we meet, we work on the machines, on upper body strengthening. WW: I work out two or three times a week at a gym, do upper body strengthening, and also on other days, I'll go out and do some distance pushing in my wheelchair. PM: I like to work out three times a week in the gym on strengthening, and then try to do at least 30 minutes of aerobics four times a week.

How do you keep yourself on your exercise program? How do you stay motivated?
PM: It just feels so good, it makes you feel so strong, and you feel so proud of yourself for having done it that you want to do it again. And as far as aerobics, once you do it once, then you just make yourself do it again. You can watch TV and do it, and make it a habit, and then you feel so proud of yourself. And after a week or two, you notice that your pants fit better, and it makes you want to keep doing it. JC: It becomes habit-forming. You look forward to working out once you stay on a routine every week and be consistent with a workout. Sometimes the hardest part is to get to the gym to work out, but after you get here and you work out, you just feel so much better. I'll be yawning coming in here and then feel like I've slept for a whole night when I leave. That good feeling keeps you coming back. WW: I think it's that great sense of overall well-being and also the fact that you've made yourself come, you're doing it, and then it's also the physical results that you see. You have more endurance. Like Pam said, your clothes start to fit better. And as far as inspiration or the ability to maintain, what helps me is when I've made an exercise date with Pam or Julie or somebody else, just meeting someone can help, because you're tired at the end of the day and you make a lot of excuses not to come, but when you've made a commitment to somebody, then that's really the greatest impetus to get me to go. JC: That's the way I feel with the trainer. She really helps me. I've had some time off with her, and I thought I'd come on my own and I haven't, so I know she really makes a big difference.

Are there any other people in your life who help you have healthy habits such as keeping physically active?
JC: My family, as far as diet, what they prepare to eat. Whenever I eat healthier, I feel better. PM: For me, it's my brother and my boyfriend and some of my cousins, because my cousins, they eat really, really healthy. My brother eats pretty healthy. My brother and my boyfriend are real good because they'll work out and they'll talk about how good it felt, and then it makes me want to get back on track and keep doing it. WW: At work, I'm around a lot of people who are really conscious about their diet, about eating healthy. So, I've learned a lot from them. I also come from a fairly athletic family, and so we have always been into physical fitness-you know, a lot of sports such as skiing and running. I would say I'm around a lot of people with some good habits.

Have there ever been times in your life when you've had a hard time staying physically fit? How did you overcome those times?
WW: Yes. If I've been ill or been down with an infection or going through some kind of crisis or other trauma, or sometimes I've let work interfere with my health and well-being, so I think I've gone through that. And what brings me back is I feel so much better when I'm exercising and taking this time, because not only are you doing something for your physical health, but also mentally, it really helps you get things into perspective, things that seem so overwhelming. PM: Talking to other people who are working out or just forcing myself to do it helps. When I get in the habit of not working out, thinking I don't have time, if I force myself to go ahead and work out, I generally feel better. I like it, and it makes me want to keep doing it. It's about making better habits. JC: Like Wendy said, it's also the mental fitness that goes along with being physically fit. It helps work out tension or stress. PM: When I start getting really angry and frustrated, if I do some aerobics or work out, then it makes me feel a lot more peaceful. I'm not as angry.

Have you noticed any improvements in your health since you've been on your exercise program?
JC: Yes. I feel I have more stamina and endurance to go throughout the day. I sleep better at night because I've worked out. WW: I feel like I'm more productive in the rest of my life as well because I feel so much better. Just mentally, I feel like I've got so much more energy. When I don't work out, I just feel a lot more tired. So I'm probably nicer to be around and also a little happier. Also, physically, I have less problems with spasticity and other things. Overall, it's so good. JC: It helps the circulation, with our immobility. PM: It makes me feel better mentally because I feel more peaceful, and when my pants fit, I'm really happy.

What advice do you have for other women with disabilities who are trying to improve their physical activity?
PM: Just start something. Do five minutes. When I first started aerobics, I could only do five minutes at a time. Make yourself do it, and keep trying and find something that you like to do. Find something, and it's really good if you do it with a friend or a buddy. Compare notes with somebody, because then if you have to report to somebody, you get a lot more self-discipline than if you're just trying to do it yourself. It's easy to make excuses and say, "I'll do it tomorrow, I don't have time," but just five minutes here and there really adds up. JC: I definitely encourage it, as soon as anybody could get on a program. It makes you feel so much better. People think that it's such hard work, but it's got a lot of good rewards that you really don't think of in the beginning when you start to work out. WW: Like Pam said, start with those baby steps. Don't all of a sudden decide that you're going to go work out for two hours three days a week because I think you can cause yourself a lot of pain and suffering. You really have to start small so you're not overwhelmed and you don't burn out too quickly. I would also recommend talking to a trainer or somebody that's experienced who can put you on a good program that's going to work for you, so you're exercising the right way, and you can continue to exercise for a long time and get the most out of it. Sometimes the heaviest weights aren't what's recommended and sometimes, people go about it the wrong way and get burned out very quickly and injure themselves.

Do you have any final thoughts on exercising and women with disabilities?
PM: Start little and just keep with it. WW: Exercising is an important part of life for maintaining health and longevity. Just do whatever it is that you can do. Start small and don't overwhelm yourself. PM: Move whatever you can for as long as you can. Get a buddy system. That helps the most. I'd say the mental rewards are just as important as the physical rewards.

Home Cooking Made Easy
by Mary Pat Bolton, RD, MS

Jobs, kids, housework, Little League, paperwork, exercise -and oh yes - meal preparation. If you're like most women, you juggle a daunting "to do" list, and a disability can make things even more challenging. Cooking healthy meals sounds great, but who has the time? Well, there are steps you can take to streamline life in the kitchen, even if most of your life goes by in the fast lane.

Whether meals are prepared by you or a caregiver, aim for high productivity. When you're browning ground beef or turkey, for example, cook several pounds and freeze in meal-sized amounts. Instead of chopping a single onion or green pepper, dice and freeze a whole bag full. Make a double batch of muffins and freeze the extras. Use a crockpot to simmer stew, chili, spaghetti sauce, and soups, then freeze in meal-sized portions. When you're preparing spaghetti, boil another pot of water and cook enough macaroni for a tuna casserole or pasta salad later in the week. While doing the dishes, make a large pot of rice to serve in the next few days with chili or stir-fried vegetables. Once you start thinking in these terms, you'll find countless opportunities to save time by working more efficiently.

In the meantime, however, there's still the question of what to serve tonight, when the freezer isn't full, and the mere thought of recipes and ingredients exhausts you. On such evenings, forget about cooking, and focus instead on assembling a simple meal from a well-stocked pantry. Here are some ideas.

• Heat a can of soup, and open packages of raw baby carrots and whole-grain bread. Top cottage cheese with canned fruit, and set out a plate of fig bars.
• Assemble salads from packaged mixed greens, deli-sliced ham or turkey, reduced-fat cheese, tomatoes, croutons, and low-fat dressing. Serve with sourdough rolls and fresh fruit.
• Heat canned vegetarian baked beans, and make toasted cheese sandwiches with reduced-fat cheese, tomato slices, and whole-wheat bread. Serve with chilled applesauce and gingersnaps.
• Make boxed macaroni and cheese, using skim milk and half the margarine called for in the instructions. Cook frozen mixed vegetables in the microwave, and heat brown-and-serve rolls. Try fruit yogurt topped with sliced bananas for dessert.
• Put together a speedy pasta primavera by tossing cooked pasta with frozen Italian vegetable combinations which you've sautéed in a little olive oil.
• Top with parmesan cheese, and dish up low-fat vanilla ice cream with chocolate syrup for dessert. Combine canned beans and tomatoes with a packet of chili seasoning andcooked, drained ground beef or turkey. Serve with salsa, grated reduced-fat cheese or sour cream, crackers, and orange sherbet.
• Top spaghetti with bottled sauce. Serve with a simple salad of greens and low-fat dressing. For dessert, have angel food cake topped with thawed strawberries in syrup.

Organize a User-Friendly Kitchen

• Arrange the dishes, utensils, bowls, and pans you use most often where you can reach them easily. Consider open shelving, or install pull-out shelves, lazy susans, spice racks, plastic bins, lid holders, and other organizers.
• Choose pots and pans with flat handles on each side for easy lifting, or slip insulated pipe covering over long handles for heat protection and easy gripping.
• Use stainless steel and plastic bowls and measuring cups to reduce breakage.
• Keep an extended reacher in a specific, convenient place.
• If you use a wheelchair, place a heat-proof board across your lap to carry things.
• Place a towel or place mat under counter appliances so you can pull them toward you.
• Use a refillable container with a spigot to make water easily accessible in the refrigerator.

Swallow Hard and Knock on the Door
by Margaret A. Nosek, PhD and Michele Arnold

Finding a physician who will participate with you in your health care is a major accomplishment. It's often another major challenge to make that first appointment...and keep it! Prepare carefully before your first visit with any physician. Bring your medical file, which should include your history, allergies, and current medications. Bring all your bottles of meds with you if that's easier. Have your questions written down. Ask about the physician's credentials. Ask what professional medical journals they read regularly. If some of your questions are embarrassing, the doctor can simply read them and jot down the answer. Be assured that confidentiality is an issue most doctors respect. For any physician to do his or her job as thoroughly as possible, he or she must have all the facts, so don't leave out pertinent information because it embarrasses you.

If you show up on time for your appointment, you should not have to wait long before seeing the doctor. Patients who need extra time and medical emergencies can throw schedules out of whack. If you've waited longer than 15 minutes, you have a right to ask how much longer it will be. Doctors who treat patients rudely or run their offices inefficiently need to receive your feedback.

Women who are the most satisfied with their doctors report that on the first visit they meet with the doctor in his or her office before being examined. Unfortunately, most women report that the only time they ever talk with their physicians is when they are naked on the exam table. In most instances, a patient should not be completely naked during an exam. The parts of you not being examined should be covered with a gown and/or sheet.

For many of us, getting up on the exam table is a major effort. Explain clearly and insistently to the physician and nurse how they can best assist you in mounting the table. While instructing them how to hold and support you, try to advise them on how to protect themselves, such as saying, "Keep your back straight and bend your knees." Also remind them how much easier it would be for everyone if they would invest in an elevating exam table!

A second opinion is appropriate when the following subjects come up: expensive tests like CT scans and MRIs, or surgery. Use second opinions to look at your problem from a different perspective; for example, if you are seeing an orthopedic surgeon or neurosurgeon for a bad back, get a second opinion from a sports medicine doctor or physiatrist, someone who does not perform surgery. You may discover a whole new way to get your problem solved. Don't be afraid if a physician gets angry with you for seeking a second opinion; it's standard practice in the world of medicine.

When surgery is a must, be sure to check out the anesthesiologist. Find out where he or she went to medical school and inquire about board-certification. Schedule a meeting with the anesthesiologist well before surgery to explain any respiratory limitations you have. This will help determine the best type and strength of anesthesia so that you will minimize your risk of respiratory complications following surgery.

In the next issue, we will give you some suggestions on how to motivate yourself to get those checkups that you know you should have. And how to leave the doctor's office smiling!

Available on Video

Reproductive Health for Women with Spinal Cord Injury: The Gynecological Examination, produced to educate health care providers, is also a good overview of what women with SCI can lobby for to improve reproductive health care services in their communities. A 30-minute videotape, which is sold with a study guide, covers: management of dysreflexia during examinations, methods of transferring from wheelchair to exam table, breast examination, mammograms, and pap smears. Amie B. Jackson, MD, founder of the first U.S. clinic for women with disabilities, is featured. Available in 1/2" VHS format with closed captioning for $39.95 plus $5 shipping (in USA only) from University of Alabama at Birmingham, Department of Physical Medicine and Rehabilitation, 1717 6th Ave. South, #506, Birmingham, AL 35233 USA. Inquire by phone 205-934-3283 regarding shipping prices for other countries.

Making the Move to be More Physically Active!
by Maura Cavanagh-Dick, MEd

You have thought about becoming more physically active, and now is the time to make the move! First, you need to think about why you want to be more physically active, and what are your goals. To be successful at becoming more physically active, you must set clear and realistic goals. Think small! Start with one or two small short-term goals. Think of these as steps along the way to your long-term goal. For example, start with a goal of being more physically active for five minutes each day. What does this mean? Try walking or wheeling in your home or outside for five minutes each day. While you walk or wheel, listen to music, look at birds, or just think about what you need to do that day. This may seem like a small goal and not what you envisioned being more physically active would be like, but remember, this is the beginning and only one short-term goal. Your long-term goal may be 30 minutes three to four days a week of being more physically active. That's great and you have plenty of time to get to this goal. The key to success is to start succeeding, and if you start small, you will! When you reach each short-term goal, you can reward yourself; you'll feel good, be more likely to continue, and eventually reach your long-term goal.

So, now that you have thought about your goals, what is standing in the way of being more physically active? You may still feel that as a person with a disability, you cannot be more physically active or that more physical activity will result in more pain or fatigue. Although both of these are legitimate concerns, they can be overcome. First, when you are more physically active, you may feel a certain amount of discomfort in your muscles due to the effort required by the activity. This is normal. Doing more activity is doing more work, and therefore it will feel challenging and even difficult at first. However, as you become more physically active, the easier the activity and your daily life will become because your body will be stronger. What you do not want to feel is pain. If you do, consult your physician. [Also consult a physician if you have post-polio syndrome or a neuromuscular disability, as too much exercise for too long intervals could break down muscle that can't be rebuilt. - The Editor] Secondly, you can be more physically active either by doing more activity in your home or by trying new activities such as rowing, wheelchair dancing, or tai chi. What it takes is YOU! You to decide to be more physically active and you to push through the barriers and take charge - YOU CAN DO IT!

Decided to Quit?

If you have reached the point that the benefits of stopping smoking and the costs of continuing to smoke are both high, and if you are pretty sure you want to quit soon, don't throw away your cigarettes and lighter yet. Researchers have found that it is important to take one more step. They recommend that you engage in a thoughtful period of preparation. The preparation stage is the bridge between a decision to act and the specific steps you take to achieve your goal.

Strategies that seem to be effective during the preparation period include continuing reevaluation of who you want to be, increasing your commitment to action, and building helping relationships. Thus, you will increase your chances of success by focusing more on your new self and the future. This task will be easier if you can concentrate on the benefits of changing, let go of your image as a smoker, and make change a priority.

One effective way to strengthen your commitment to action is by taking small steps. For example, you might increase the time between cigarettes or cut down the number of cigarettes you smoke. Such steps build your confidence that you can quit. They also give you an opportunity to learn more about the most tempting situations for you to smoke and to prepare resistance strategies. Don't underestimate how difficult quitting may be. On the other hand, a prepared quitter, someone who takes time to strategize before setting a quit date, is much more likely to be successful. Women who smoke 10 or more cigarettes a day may want to investigate the nicotine replacement aids or the new prescription drug bupropion, which were discussed in previous issues, and incorporate them into your plan.

Announcing your intent to change can increase your motivation for success (or at least your motivation for avoiding failure!). Whether you "go public" or let only a few people know what you are doing, try to tell them what they can do to give you positive support. Most important, tell them what you consider to be the "don'ts." Some of the points on your list might be: "don't nag me, don't keep asking how I'm doing, do offer help when things seem difficult, do tell me you are proud of my effort." As you shift your routine and begin to make changes, the first few days will be the most difficult. Prepare others by asking them to be tolerant when you are edgy, and letting them know this is a critical time for their support. Surprisingly, researchers have found that having positive support isn't as helpful as not having negative support.

RESOURCES

A Few Helpful On-Line Health Information Sources

The Hesperian Foundation
hesperianfdn@igc.apc.org
The Hesperian Foundation is a well-known publisher of low-cost health-related materials concerning women and people with disabilities. Their newest periodical is "Women's Health Exchange."

The National Clearinghouse on Managed Care and Long-Term Services and Supports for Adults with Developmental Disabilities and Their Families
http://www.mcare.net
This site includes updated articles on what's in the news about managed care and disabilities. It also has excellent links to managed care from consumers, insurers, providers and policy makers' perspectives.

Family Caregiver Alliance Clearinghouse
http://www.caregiver.org
This site offers fact sheets and a reading list on caregiving issues. Includes links and a search engine.

Food Safety Publications for Consumers
http://www.usda.gov/agency/fsis/pubconsu.html
Informative articles on food safety, including food safety during disasters. Includes search engine.

HealthFinder
http://www.healthfinder.gov/
Gateway consumer health and human services information web site from U.S. government. Online publications, clearinghouses, databases and search engine.

Canine Companion National Web Site
http://www.caninecompanions.org/index.html
Information on canine companions for independence. This site does not include information on guide dogs. Provides regional resources for more information.