Redefining exercise: no fun, no gain.

The benefits of making physical activity a regular part of your life are trumpeted everywhere. Today we know that this goes for people with MS, too. A recent study at the University of Utah, sponsored by the National MS Society and the Jimmie Heuga Center, found that regular aerobic exercise significantly increased fitness and strength in people with mild to moderate MS disability. People in the study also experienced a decrease in depression, fatigue, and anger.

Do you think of exercise as a "no pain, no gain" workout in a gym or a grueling jogging regime? There are different kinds of activities for different people, depending on physical ability and temperament. You know you've found the exercise meant for you when you can't wait to do it again. For some, this might be the challenge of competitive sports; for others, it's the sense of mastery and relaxation that comes from practicing t'ai chi or yoga; sometimes it's the camaraderie of a class or a group outdoor adventure.

Moreover, exercising can include activities not ordinarily called exercise such as gardening, fishing, going for a walk, or playing with pets. The right activity is the one that works for you, and fits into the rhythm of your life.

Forty-nine-year-old Mary Tinker thrives on the exhilaration and social interaction of the outdoor recreational programs she organizes as the continuing education coordinator for the Society's Colorado Chapter. Ms. Tinker, MA, RN, has relapsing-remitting MS and usually walks with a cane, but sometimes uses a scooter or wheelchair. For her, having a good time has come to include skiing, whitewater rafting, camping, sailing, and jeeping excursions with other chapter members. She never did these activities before she was diagnosed with MS. "We're pooped at the end of the day," she explained, "but it's a good kind of tired, because we've had such a terrific time."

Thanks to modified rules and adaptive equipment, having MS need not be a barrier to finding an enjoyable routine or sport. But people with MS probably need to keep in mind strategies for dealing with fatigue, heat, and feelings of self-consciousness.

Access Sports

Rules for many popular sports can be modified to accommodate players with MS. The modified rules for tennis, for example, allow the ball to bounce two times instead of once before the player takes a swing. The United States Golf Association has approved modified rules for golfers with disabilities, and customized golf clubs are available for people who play from wheelchairs.

Many people find ways to enjoy sports without modified rules or equipment by keeping their limitations in perspective. When Don Tykeson of Eugene, Oregon was diagnosed with secondary progressive MS at age 55, after 25 years of having relapsing-remitting MS, he decided to step up his golf to a couple of times a week. Now 70, he continues to play with partners who don't have disabilities.

"My golf cart bears a `Handicapped' sign," Mr. Tykeson said. "Most golf superintendents will give special dispensation to handicapped players. I'm allowed to drive the cart off the paths and up to tee boxes and areas near the edge of the greens. A caddy rides with me. I get out of the cart, and he hands me my canes. I get in position, he takes my canes and hands me the club. After I hit the ball, we reverse the procedure. The caddy also helps me read the greens and retrieve the ball from the cup."

"On days when I'm feeling great, the game can go beautifully," Mr. Tykeson said. "On days I am dot, the scenery is still beautiful. They will not write it on your epitaph if you fail to play every hole or putt every green."

Hitting That MS Wall

Most people with MS must balance the amount and degree of exercise with their level of fatigue. Pushing yourself too hard can increase overall fatigue, which defeats the whole idea of getting the most out of an ongoing activity. When Mary Tinker feels fatigue about to interfere, she takes 5 or 10 minutes for a do-nothing, re-energizing rest.

"It's not always necessary to sleep for an hour or two," she advised. "Lie down or sit down, close your eyes, breathe deeply from the diaphragm, and clear your mind. Remember to do this before you're exhausted."

Frank Vanik, MS, PT, who is recreation coordinator for the Maryland Chapter, has secondary progressive MS. Mr. Vanik, age 30, has always been athletic. Since his diagnosis in 1989, he's participated in snow- and waterskiing, wheelchair basketball, handball, bicycling with a hand-cycle, whitewater rafting, and regular swimming. But he's always aware that he has to manage his energy. "I make sure to get a good night's sleep before I'm going to play," he said. "If I have to go up a hill to get to the basketball court, I'll ask someone to push my wheelchair." He tries to schedule lessons in the morning when his energy level is highest.

Keeping some enjoyable physical activity going while managing fatigue can seem like an uphill battle. Understanding your own limits and taking a longer view is important. "As people with MS become better conditioned from exercising, they are able to exercise longer with less fatigue," explained Dick Hicks, PhD, Executive Director of the Jimmie Heuga Center in Edwards, CO.

If You Can't Take the Heat. . .Plan Ahead

Another concern is getting overheated, which can sometimes bring on symptoms for people who are heat sensitive. Swimming, snorkeling, scuba diving, and adaptive waterskiing are always "cool." Rafters and boaters need only to reach over the side for a refreshing splash. But horseback riders, wheelchair tennis players, or anyone else who is active on dry land should carry a small spray bottle for a refreshing "spritz." Of course, a bottle of drinking water is a must. Cold gel-filled wraps, vests, or hats are popular. And regardless of the season, it's advisable to dress in layers, so that you can peel or add a layer as your body temperature changes.

To build some additional resistance to heat, sit in a bathtub of cool water for 30 minutes before exercise. Return to the tub for 30 minutes after exercise to cool down. Everyone is wise to stay inside in the middle of the day when the sun's rays are strongest. Indoor exercisers can always find relief with air conditioning and fans.

Helen Olena, age 50, of Mohnton, Pennsylvania, a volunteer peer counselor with the Society's Central Pennsylvania Chapter, has been living with benign MS for about 40 years. She joined a gym for regular exercise, but was turned off by the focus on snazzy spandex outfits. She dropped out when making the trip to the gym became a chore. Now she is in her element, with an exercise routine she's tailored to meet her individual needs for time and space, and her own energy levels.

"I really love walking on my treadmill to the beat of radio music," Ms. Olena said. "I hold on to the handrails, close my eyes, and practice striding. It's wonderful to walk confidently at full stride. To stay cool, I position a little fan to blow over my head and shoulders."

The Mind Says, "Go for It," but the Body Answers, "Not Today"

Resolutions, discipline, and a competitive spirit all have their place--and so does a healthy recognition of limits. Deborah Mandelbaum, a clinical social worker who is a consultant at the Society's New York City Chapter, advises clients to give themselves permission to take time off if they need it. "Be kind to yourself and don't beat yourself up over a situation you can't control."

Mr. Vanik agrees. "I've learned to be assertive if I have to cancel," he said. "When I tell people adamantly that I'm just not up to it today and I won't put myself at risk, they are less likely to try to talk me into changing my mind."

"Some people don't make plans, for fear of disappointing themselves and others," said Pat Provance, PT, coordinator of the MS Rehabilitation program at Union Memorial Hospital in Baltimore. "But it's better to alert your companions and instructors ahead of time that your condition sometimes fluctuates. And keep a contingency plan ready."

The Body-Anxiety Blues

When spasticity prevents a limb from bending or double vision daunts one's aim, it's easy to feel self-conscious. Many a trip to couch-potato land begins with embarrassment and grief over what MS has stolen away. Keep in mind that there are different ways to cope with this self-consciousness.

For instance, Ms. Mandelbaum remembers a chapter member who attended a t'ai chi class for able-bodied people. She learned to remind herself that people without disabilities have physical limitations. too. There were class members with weak knees or bad backs. When she was able to talk to her instructor about her balance problems, the instructor taught her to do certain poses against the wall.

Some people handle embarrassment by joining sports groups and classes adapted for people with MS. "People in MS groups understand," said Ms. Mandelbaum. "Many classes also serve as support groups."

Mary Tinker's chapter group skis with the National Sports Center for the Disabled. "Their mission is to find a way for everyone who wants to participate to do so, no matter how disabled they are. And they serve people with disabilities from blindness to quadriplegia. It's inspiring to see what people can do," she said.

"It's self-defeating to focus on the activities we simply can't do anymore," said Mr. Vanik. He uses adapted equipment, and when he skies with people who don't have disabilities, he reminds himself, "We're all going down the same mountain."

On Your Own Time

Some people find inspiration and support in group activities; some prefer finding their fun on their own. Embarrassment may not be the issue. Solitary activities work for them because they don't have to go anywhere or show up at a set time. They control the room temperature; they dress as they please.

Diane Parker, 41, who has MS, is a member of the Board of Trustees and serves on several committees at the Orange County Chapter in California. Before her diagnosis in 1991, Ms. Parker enjoyed running, speedwalking, and tennis. Now, even though she is unable to walk very long distances and must use a wheelchair for trips to the mall, she refuses to allow MS to ruin the enjoyment exercise has always given her. She feels that her day is incomplete unless she exercises for 90 minutes each morning. She swims, pedals a stationary bicycle, and works out with 10-pound arm and leg weights.

"I always loved to exercise, for the sheer pleasure of it," Ms. Parker said. "It's fun knowing that I'm doing all I can to stay fit. My workout enhances my endurance. And it gives me an extra energy boost that helps me to handle everyday responsibilities."

Ms. Parker was athletic before her diagnosis, but people without such a history need to find some ongoing activity that's fun. Perhaps the best advice comes from Dick Hicks:

"Comparing yourself to others' athletic feats can set you up for failure," he said. "Set yourself up for success by incorporating physical activities you enjoy into your regular life. Then congratulate yourself for finding what you like."

RELATED ARTICLE: Some Resources

* Sports, Everyone! Conway Greene Publishing Company, 1995, Cleveland, OH, 1-800 977-2665, $16.95. A comprehensive directory of information on adapted sports and recreation from aquatics to yoga. You'll find clubs, associations, and helpful checklists.

* The Jimmie Heuga Center, 27 Main Street, Suite 303, P.O. Box 491, Edwards, CO 81632; 1-800-367-3101. The Jimmie Heuga Center is a nonprofit research institution that runs 5-day wellness programs for people with MS. Their programs are supported by nationwide skiing, snowboarding, and mountain bike races.

* A Modification of The Rules of Golf for Golfers With Disabilities, 1997, The United States Golf Association, P.O. Box 708, Far Hills, NJ 07931-0708; 908-234-2300. Website: http://www.usga.org

* The National Sports Center for the Disabled (NSCD), P.O. Box 1290, Winter Park, CO 80482; 970-726-1540. The NSCD is a nonprofit corporation that offers winter and summer recreation. Winter sports include snow skiing, snowshoeing, and cross-country skiing. Summer recreation activities include fishing, hiking, rock climbing, whitewater rafting, camping, mountain biking, sailing, therapeutic horseback riding, and a baseball camp.

Mary Harmon is a freelance writer in New York who is living with MS. When she wants fun, she takes her kayak and heads for some open water.