ATHENA

Taking a Second Look at the Exercise Thing
by Margaret A. Nosek, PhD

OK let's talk about this exercise thing. Word is out that I'm not very keen on it for myself, even though I very dutifully promote it for others. My own physician read my editorial in our first issue of Athena and her response was basically, "Uh-huh. That explains a lot." I think I am not alone in my feelings of desperation about this, wanting to do what's best for my health but feeling, well...afraid. I was very gratified to read the following feedback from our good friend in California, Carolyn Vash, a postpolio quad.

"I got my copies of Athena. Nice! I saved the nutrition feature from the first one. The second one recommended so much food daily that I'd gain 100 pounds in a year...unless we can redefine a serving as about a teaspoon! It didn't seem at all tailored to people who don't exercise because they CAN'T (paralyzed you know). But I gather your readership is more able to exercise than I or you wouldn't write editorials encouraging them to get more physical. Anyway, I'm still waiting for research findings that point the way to us who would dearly love to exercise if we could but literally can't. I got caught up in the exercise craze of about 10 years ago and wiped out several formerly very useful muscles by overdoing them. They're permanently kaput. AFTER the damage was done, Jacqueline Perry, MD [physiatrist and post-polio expert at Rancho Los Amigos Medical Center, Downey, CA] explained the foolishness of anyone with such borderline strength as I wasting an erg of it on nonpurposeful exercise, how a runner hitting the wall is using about 50% capacity whereas I might use 100% to pick up a dropped paperclip, how doing that creates microtears in muscle fibers that never recover. You may want to include a few such caveats in your issues that push exercise. Even semi-smart people such as myself may not put it together that "exercise may be good for the vast majority, but not me".

Here's how I deal with this. Until someone discovers how to achieve an aerobic effect without damaging myself using such pittance few muscles as I have left, I do as much as I can to keep my blood moving around. Toward that end, wheeling around the neighborhood to walk my dog is better than going for a drive in the car. Flying kites on the beach is better than reading a book at my desk.  Having someone move my arms and legs around twice a day is better than nothing. And then there's always sex. We may not have many muscles to work with, but there certainly is a lot we can do
beyond the traditional notion of exercise to improve our fitness.

This issue of Athena concludes our first objective, to present information to you as a woman with a disability about how you can improve your state of wellness. We've tried to motivate those of you who don't really want to think about changing; we've given resource information and thinking strategies to those of you who would like to take some action but have to overcome some barriers first; we've served as a cheerleader to encourage those of you who have taken the plunge and tried something new; and in this issue, we're offering tips on how to make healthy living a habit. Although
we had funding for these four issues only, we have applied for continued funding to produce Athena. Future issues will continue to focus on health promotion as well as other current research topics at CROWD. So stay tuned for Volume 2 to arrive in a few months. Meanwhile, check out our newly revised web page at www.bcm.tmc.edu/crowd. It has research summaries, profiles of CROWD faculty, all back issues of Athena, a message board, an order form for our educational materials and our really cool t-shirts, and lots of hot links to other information resources. We continue to welcome your feedback and stories about your experiences. That's how we learn best, from one another.
 
 

How I Quit Smoking
by Nita Weil as told to Kathy Meroney

Nita Weil, Director of Volunteer Services at The Institute for Rehabilitation and Research in Houston, Texas, is a polio survivor.

I was about 17 years old when I started smoking. I had just moved to New Orleans, and I had a stepmother who was seven years older than I, and she smoked. I thought that was so cool. Everybody smoked. It was really the thing to do. So I tried smoking, and the first few times, it was just awful. I was coughing and gagging, and I thought, "Why do people do this?  This is horrible!" But I kept doing it. I was smoking Chesterfields. I don't think those even exist anymore. They were unfiltered, and I just thought it was wonderful. I loved smoking, and I thought it was very sophisticated. Everybody did. In every movie you saw, people smoked.When television started, people were smoking. I just thought it was a great thing to do, so I did it. I smoked for about 23 years.

The two years prior to when I quit were the most difficult because I'd never seem to make it. I was always trying to quit, never quitting, and that was hard. It seemed to be an incessant battle. I never seemed to quite get past that "I haven't had a cigarette in an hour, I haven't had a cigarette in two hours, I haven't had a cigarette in three hours. I don't know if I can stand this much longer."

I would divert myself from smoking by reading, going outside, going for a walk, getting on the telephone, or just getting my mind off of it. I did so many things, trying to change my patterns of when I needed to smoke and when I ate. For example, usually when I'd have a meal, the first thing I'd do is light up a cigarette. What I tried to do was to change that pattern so that when I finished a meal, I would leave the table, just physically roll away from the table and start doing something else.

I had a really good friend who was a smoker, and she was trying to quit, and we tried to encourage each other. Just before I quit, I had an upper respiratory infection, and I had been given antibiotics, which killed all the flora and fauna, and I had the sore throat of the century. I couldn't swallow bananas mashed. We had planned a trip to Dallas for a convention.  In those days, I wasn't in a van, I was in a stationwagon, so I couldn't hold the cigarette. That was one good thing. Going to Dallas was about five hours, so every now and then I'd try smoking, but it was just so painful I couldn't. So I really used this crisis in my throat as a way to quit smoking. On our way home from Dallas, I just decided I wasn't going to smoke all day, and I made it all day long. The terrible soreness in my
throat and the nagging thought that I might have cancer of the throat really was a motivating factor. When I got home, I thought, "Well, you made it through one day, let's try one more." So I really finally realized that I had to do this one day at a time. The thing that used to send me into orbit was the thought that I can never have another cigarette for the rest of my life, that this is forever, because I loved smoking. This one day at a time thing, and this horrible sore throat that was so raw really greased the skids for me and got me launched on not smoking. And a week went by and I hadn't smoked. Another week went by and I hadn't smoked, and that was the longest I had ever gone without smoking a cigarette. I finally realized I was on the way.

A funny thing happened, though, six months later. I went to a party and someone sat down next to me and lit up an unfiltered cigarette, and it smelled wonderful. I asked them to give me a drag, and I thought to myself, "What are you doing? You've got six months under your belt; what are you doing?" Then I thought, "Well, this is going to taste terrible. It's going to make me choke and cough and I'm going to hate it." Wrong! I took a drag all the way down to my toenails and blew it out and it felt wonderful. Then I thought, "That's it! I can never do this again!" And I never have.

I decided to quit because we started hearing more about lung cancer, and how bad it was and personally, I was beginning to wheeze, and I knew I was addicted. I was smoking a pack and a half a day. For me, that was a lot, because I use a respirator, and people always thought,"How can you smoke and use a respirator?" Just the awareness of how bad it was, and the fact that I felt like my lungs were sluggish, helped me to stop smoking. I thought, "You really need to do something before something really bad happens." And when that sore throat thing happened, I thought, "God's
telling me something. I'm going to get cancer of the throat. I better get ahead of this and I better do something about it. No one's going to do it but me, and I have to take charge of it; I have to take control." And thank God, I was able to do it. The sore throat certainly was a contributing factor to my smoking cessation. It really helped me a lot. But I don't really advocate that you wait for a sore throat.

As it turned out, my best friend who had been trying to quit with me was diagnosed with lung cancer. She fought it for five years and then died.

I felt great once I really kicked it, once I really stopped smoking and stopped having that need, and that need thing lasted for a good year afterwards. Now, I'm so grateful that I don't smoke and I feel so much better. I remember we used to go to meetings and everybody in the meeting smoked, and cigarette smoke would blow in your face. I went to a gambling casino and came home and everything stank-my clothes, my hair, everything-and it was just awful. And I was always amazed that I had never smelled it before. I never realized how awful that smelled until I quit smoking.

I have noticed many improvements in my health since I stopped smoking. My lungs feel better. I was wheezing for a while and I don't wheeze anymore. A funny thing happened after I stopped smoking. The doctors told me that I was going to feel so much better, and all the cilia in my nose and throat were going to heal up and get better. I got really hoarse, and I couldn't understand that. I said, "I've quit smoking. Why am I getting hoarse now?"  And one of the doctors said, "Your throat is trying to get back to normal. All this and that has accumulated in your cilia, and your throat is
clearing up, and you're having this as a reaction." But other than the hoarseness I had, I feel a thousand times better. I am so grateful that I don't smoke. I feel better, and I breathe better, and I know that I'm not killing myself.

My advice to other women with disabilities who are trying to stop smoking is to find something that really interests you, whether it's reading, listening to music, walking, going to the country, going to the park or shopping. Get away from where you usually smoke. Get away from the habit patterns that you've created. Just focus on the fact that every time you don't smoke, you're helping yourself get healthier, that you're getting further and further away from the need for the nicotine, the nicotine and the tar that are so terribly bad for you.
 
 

EXERSISE: Staying Movivated to Exercise
by Heidl Thompson-Torrence, MSEd

  Okay, by now you have begun a program of regular physical activity. Congratulations on making this healthy lifestyle choice! You are probably beginning to notice some of the benefits from being more physically active.  But let's face it, there are days when you don't feel like exercising. The reasons may include feeling sick, tired, discouraged, or simply not having enough time. Exercising may not seem like a high priority right now. So how do you stay motivated and moving?

Staying motivated at times like this is difficult. When you decided to make wellness a priority and decided to increase your level of physical activity, you made a commitment to yourself. Following through on that commitment may mean doing things that you may not want to do all the time.  Here are some ideas to make sticking to your plans easier.

1. Start keeping a journal. Write down your goals and plans to reach those goals.  Then keep track of everything you do toward meeting your goals.  Record how you feel about making the effort. Look back on your journal each week to see how much progress you have made. Once you see how far you have come, it is easier to continue.

2. Get other people involved. It is always more fun to exercise with others. Friends and family can also help motivate you when sticking to your plans seems difficult. If you tell others about your goals, they can support and encourage you.

3. Reward yourself! You deserve to be rewarded for your hard work. Set smaller goals and times to review your progress. If you have reached a level you are happy with, give yourself a reward. It may be a new outfit, a night out with friends, or a bouquet of flowers. Make sure that the rewards you choose are meaningful to you.

4. If you are bored with your exercise plan, revise it! There are many types of physical activity you can do. Add new activities to your routine.  But remember, the activities you choose must be done often and at an effort that causes your breathing rate to increase.

A Guide to Successful Weight Management
Slowly Relish Every Bite of Moderate Food Portions
by Mary Pat Bolton, RD, MS
    Baylor College of Medicine

It's been said that on any given day, one-third of Americans are on a diet, another third just went off a diet, and the rest plan to start one on Monday. Unfortunately, this on-again, off-again approach to weight management has been a dismal failure. It's now estimated that more than half of our adult population is overweight, and it's clear that temporary diets just don't work. Successful weight management requires a lifelong commitment to sensible food choices, regular exercise, and - perhaps most important - a healthy attitude toward food and weight. As you work on developing and maintaining good eating habits, keep the following ideas in mind.

Instead of "dieting" with a particular goal weight in mind, focus on changing your habits to achieve health and fitness. Be selective about the foods you eat, not because you should, but because you want to take care of yourself in the best possible way.

Move away from excessive preoccupation with food and diet. Good eating habits are flexible and reasonably consistent, but not perfect. As long as most of your food choices are healthy - and your portions are moderate - no food needs to be off-limits.

Be realistic about your weight. People come in many shapes and sizes, and it makes little sense to strive for a figure that's not natural for you. Respect and nurture the body you have.

Eat slowly, and savor each bite. Food is one of life's pleasures, so take time to enjoy it. You'll find that you feel more satisfied, and you'll probably eat less as well.

Pay attention to hunger signals. Eat when you're hungry, but don't let yourself get so hungry that you grab fast, convenient foods which may be high in fat and calories.

Don't create food cravings and feelings of deprivation by labelling foods as "bad" or "forbidden." If you really want a particular food, eat a moderate portion slowly and deliberately, relishing every bite - then move on.

Be accountable for your food decisions. If you polish off a plate of fudge, don't tell yourself "I have no will-power." Eating the fudge was a choice, not a moral lapse. Think about why it happened and how you would like to handle a similar situation in the future. Then put the incident behind you, and resume your healthy habits at the next meal.

Finally, keep food in perspective. It's an important part of life, but it can't fix problems or change unhappy feelings. Above all, don't put your life on hold because you're trying to lose weight. Live in the present, and go after what you want. The happier you feel, the easier it will be to reach and maintain your best personal weight.
 
 

Participating with Your Physician Means Empowerment
by Margaret A. Nosek, Ph.D. and Michele Arnold

Our hope is that by now you have made your overall health a priority, and that you've prepared for and visited a physician with whom you feel comfortable having a long-term, mutually respectful relationship.  After climbing that huge mountain, please don't slide. Don't let yourself get out of the habit of making and keeping well woman check-ups. When that little voice inside you purrs, "blow off the flu shot this year," gag her!

We acknowledge that women with disabilities have more legitimate excuses for canceling doctors' appointments than women without disabilities.  According to our national study of women with disabilities, those with more severe disabilities don't regularly have mammograms because, among other things, they are unable to get into the position required. As a result, even when they do go, the whole breast is often not examined. In that same study, 31% of the 475 women interviewed were refused care by a physician because of their disability. It's discouraging, but you must persevere because your health is important, to you and to those who love you.

We've talked about being a participating patient in terms of being prepared for visits to the doctor, but that attitude should also include a stubborn insistence on saying no to your doctor if something doesn't feel right.  That could be a prescription, a test, or an aspect of an exam; anything that sends up a red flag for you should be voiced. If you have chosen your physician with care, he or she will be an advisor to you, not a master and therefore, comfortable about your saying no.

Dr. Jan Groff, one of our medical advisors, who enjoys her work with women with disabilities, admits "medical settings can be intimidating, but you do have control over what's being done to you. Speak up. If you can't handle needles, say so. There are alternatives. Doctors order tests routinely, so they don't  think about things from your perspective.  If you rely on your left arm, say that you want an IV put in your right. Weighing you without the proper equipment is difficult, so unless there's an important reason to weigh you, don't do it.  If test results are not explained to you fully,
demand more of an explanation. You are the boss."

Follow-up visits should be part of your commitment to health maintenance. However, if it's difficult for you to get to the doctor's office, follow-up by phone. If the doctor needs a urine sample, send it with a friend. Use your negotiating skills to work out a strategy that's best for you.  Don't let relatively minor details keep you from honoring your health.

In some ways, we face more barriers in medical settings than we do out in society in general. The lack of accessible facilities and equipment, the lack of information among medical professionals about how disability can uniquely affect ordinary health problems, and the reduction in the quality and quantity of services covered by managed care plans all serve to discourage us from using health care services. To break down these barriers and get the services we need to keep ourselves in peak health, we must be our own advocates. That takes information, that takes assertiveness, and
that takes guts.
 
 

Resisting the Urge to Return to Smoking
Overcoming "Slip, Slide, and Away"
by Patricia Dolan Mullen, DrPH
    University of Texas School of Public Health

For those readers who have made it past the obstacles and have quit smoking - congratulations! Your planning paid off, and now your challenge is making this a long-term change. Many people who quit smoking begin again within 90 days, about the same percentage of heroin users who return to the drug!  Thus, this article will offer tips to help you avoid relapse. After all, it would be harder to have to start from scratch again.

An important step to take is to reflect on why you wanted to quit - you probably had very good reasons for taking this step. Try reviewing the list you made in the decisional balance exercise. These are some of the benefits you will continue to realize by not smoking. Continue using behavioral strategies to control your surroundings. You may feel tempted to smoke when you encounter your old cues, even months after your last cigarette. This temptation to smoke can be very powerful, and it will not be beneficial to "test" yourself. Whenever you can, for example, avoid places where you would be tempted to smoke.

Find alternatives to smoking. Despite the fact that the physical cravings reach their peak 24 hours after your last cigarette and then diminish entirely over the next few weeks, it takes a longer time to "unlearn" the habits that accompany smoking. Routinely reaching for a cigarette after a meal or when socializing is an unconscious activity. Sugarless gum is a popular substitute for cigarettes. Finding things to do with your hands such as making lists or doing crossword puzzles, can give you something else to do. Even talking to yourself or taking some very deep breaths for a few minutes can help the urge to pass. Changing old routines that included your smoking habit to new ones will help you break the association between the activity and smoking. An example would be substituting doodling for smoking while talking on the phone. The key here is to identify creative alternatives to smoking before you find yourself in a tempting situation. And last but not least, go public! By letting others around you know that you have quit you are letting others know how important their help has been thus far and that you will continue to benefit from it.

A word about slips. Some people are very lucky and seem to be able to put cigarettes down without much effort. Many others, however, struggle with quitting. Researchers have learned that a lot of successful quitters slip from time to time. A slip is simply having a cigarette or even a few, after you have quit. This does not mean that you have lost all the ground you have gained. Most quitters are able to recover from slips, and remain nonsmokers. Some things you can do that will help you deal with slips include not dwelling on the fact that you smoked a cigarette (let it go), borrow a cigarette if you must smoke one, and throw or give the pack away if you bought one. Tell yourself you need more skillpower or a better plan; don't run yourself down with negative statements about needing more willpower.

Finally, pat yourself on the back! Start with all the amazing things you do every day to cope with your disability. Quitting smoking on top of that is a difficult task that you should not underestimate. Research-ers have learned that women are much less likely than men to take credit for their accomplishments, attributing their success to luck, for example. Remind yourself that you have what it takes.

*If you are still thinking about quitting smoking, but have not made a decision yet, try writing down the costs and benefits of smoking. If you tried to quit and did not succeed, try another plan.  Consider using nicotine replacement products such as gum or patches.
 
 
 

RESOURCES

http://www.gen.emory.edu/medweb/medweb.disabled.html
Includes information about assistive technology, blindness, CP, communication disorders, deafness, developmental disabilities, managed care, MS, muscular dystrophy, paraplegia, polio, rheumatic diseases, and self-help groups.

http://www.medsite.com
Includes information about alternative medicine, disabilities, exercise, mental health, advocacy, and bioengineering.

http://www.icdi.wvu.edu/others.htm
Has disability-related resources menu and links to other sites.

http://www.uscpaa.org/
United Cerebral Palsy athletics association - sport opportunities for individuals with CP, traumatic brain injury, or stroke.

http://funrsc.fairfield.edu/~jfleitas/contents.html
Children and teens coping with problems while growing up with medical problems and disabilities.

http://www.mdausa.org
Information about 40 neuromuscular diseases, MDA research, and services for adults, children with neuromuscular diseases and their families. Includes ALS Newsletter.

http://www.yuri.org/webable/library.html
Focus on accessibility, assistive and adaptive technology for people with disabilities.

http://www.ragged-edge-mag.com/index.shtml
Online magazine covering the disability experience in America.

http:www.mainstream-mag.com/
Advocacy and lifestyle magazine for people with disabilities.

http://www.newmobility.com/query/mssg/get_mssgs_list.cfm
New Mobility magazine's interactive cafe for exchange of disability news, resources, and culture.  Includes a jobline, chat sessions.

http://www.naotd.org/index.html
National Alliance OF the DisAbled - advocacy site for equal rights.

http://angus.interspeed.net/ppmed/
Forum for questions and answers to and from post-polio syndrome researchers, physicians and other post-polio syndrome medical professionals, polio survivors, family, friends, students, and interested others.

http://swedmc.com/~ctuey/ms_cen.htm
Rocky Mountain MS Center for research, patient care and support services for daily living. Includes newsletter.

http://www.eunet.es/InterStand/discapacidad
Information about disability issues and resources in Spain, particularly useful for consumers who speak Spanish.

http://aapd-dc.org/
American Association of People with Disabilities - cross-disability organization with goals of unity, leadership, and impact.

http://www.naric.com/naric/
National Rehabilitation Information Center - includes 60,000 disability-related records on literature, organizations, timely information, and the latest research.