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MS Victim Fights Back with Force

November 14, 1985|JOHN BOAL | John Boal is a Burbank free-lance writer

Ava Haynie pumps iron to help her cope with the effects of multiple sclerosis.

"If I hadn't built up the muscles, calf and quadriceps in my right leg, it'd be a wet noodle," said Haynie, 35.

The North Hollywood woman explained that MS affects the nerve responses to certain muscles. "So what I'm doing is developing the muscles that have not been weakened by the disease."

The body building overcompensates for those affected muscles, Haynie said, and increases her overall strength, stamina and coordination.

Haynie, a former film production assistant, has converted the second bedroom of her condominium into a weight room, where for the last 14 months she and her husband, Michael, have not only toned their bodies, but also honed an uplifting attitude.

For the Record
Los Angeles Times Thursday November 21, 1985 Valley Edition View Part 5 Page 31 Column 1 Zones Desk 2 inches; 46 words Type of Material: Correction
An article on Nov. 14 incorrectly said that multiple sclerosis is usually fatal. According to Edith Grady, a spokesman for the Southern California chapter of the National Multiple Sclerosis Society, the average life expectancy for someone stricken with MS is 35 years after diagnosis, and the average age of diagnosis is 35.

Fighting It

"When I found out I had it," she recalled, "I decided I was going to do everything I could to fight it."

The symptoms of the usually fatal disease are erratic. Whereas about 20% of MS patients have relatively mild sensations, such as a tingling in the arms and legs, the other 80% experience debilitating and desultory attacks on their vision, muscle coordination and strength. Haynie's symptoms were in the classic category, especially the fatigue factor.

In the beginning, she could only pedal for five minutes on a stationary bicycle. Now she starts her workout with a strenuous 20-minute ride. She has increased the amount of weight she can lift in a biceps curl from eight to 15 pounds. Haynie bench-presses 50 pounds and lifts 45 pounds on the pulley push-down for her triceps.

With a few more specialized exercises filtered in between frequent rest periods, Haynie regularly completes her customized condition program in one hour a day, five days a week.

Nationally, about 300,000 people have been diagnosed as having MS, and 200 more cases are reported each week. The Southern California Chapter of the MS Society, which includes Los Angeles, Riverside, San Bernardino and Inyo counties, reports that it has 3,000 registered patients but estimates that another 3,000, for one reason or another, have not registered. All may be able to enjoy a form of exercise.

"We support completely any exercise program that is supervised and is enjoyable to the patient, " said Dr. Carol Betson, executive vice president at the Rocky Mountain Multiple Sclerosis Center within the University of Colorado Health Sciences Center in Denver.

"First, we've found exercise programs to be stress reducing, which plays a very important factor in MS patients. Secondly, from the physical therapy standpoint, if you make the other muscles stronger, they can make up for muscles in the body that are weaker," she said.

Caution on Exaggeration

But Betson cautioned MS patients not to exaggerate the benefits of exercise: "We do not say that there is evidence to support that exercise is going to forestall future attacks of MS or in any way affect the prognosis of the disease."

The center inaugurated its first pilot exercise seminar in September, 1984. Twenty-four patients were given a series of in-depth tests--psychosocial as well as physical. Each participant left with an individualized "prescription for exercise." There are plans to take this exercise seminar on the road in January, 1976.

Haynie married in 1981, before she contacted MS, and credits her husband with providing emotional support during her illness. "He is so supportive and absolutely reassuring all the time. He puts up with all my complaints, my fears, my whole general being," she said.

"If he sees me fatigued and lying on the couch when he comes home from work, he'll make dinner for us. He's remarkable, because I certainly couldn't live with me."

It took more than a year of consultations with eight doctors and about $15,000 in visits and tests to pinpoint her problem.

In February, 1982, about four weeks after she had a serious but non-injurious auto accident, the healthy and energetic Haynie started having dizzy spells.

"So I went to an optometrist," she said. "He told me there was nothing wrong with my eyes. I told him, 'Maybe you can't see it through your machine, but it's happening.' "

Problems in Diagnosis

The optometrist then sent her to an ear, nose and throat doctor, who sent her to Glendale Hospital. She said that, after those tests came back negative, "I went to my first neurologist in Encino, who told me it was all in my mind."

But by now the symptoms were getting worse. She began losing a lot of weight and becoming more and more disoriented. Walking became a calculated effort.

"I was so angry because everybody was telling me there was nothing wrong. They wouldn't even give me the time of day, just a cursory examination. It started making me crazy," she said.

Another optometrist told her she needed a vision therapist, who referred her to a chiropractor. By that time, she couldn't lift her right leg. But at least her chiropractor believed there was something wrong and sent her to have a brain scan and angiogram.

Those tests were negative. Then a second neurologist also told her it was in her mind. "A third neurologist didn't really say what he thought," she said with a laugh. "I was just like Jane Doe to him." Her fourth neurologist believed there was something wrong with her and ordered a spinal tap.

'Why Me?'

When Haynie finally was diagnosed as having MS, she said, she thought: " 'How could this be? How did God pick me to do that? Why me?' I refused to fully accept the fact I had MS."

For Haynie, a grudging acceptance of her illness was one thing; adjustment was quite another. At first, she tried to keep her normally active pace. But soon she had to take regular daily naps for rejuvenation, change her diet and take vitamins.

Her worst moments occur, she said, "when I want to do something and I can't because my leg is too tired and doesn't work. I just can't be the person I used to be. But I thank God for my sense of humor . . . and I still have a very strong will to survive, to beat this."

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