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Coping with a disease doctors say should have killed him years ago, Satsuma's Bert Woodard even wrote a manual to help others do the same By JANE NICHOLES Staff Reporter  Burt Woodard with Mom, Lura Woodard  SATSUMA - With a pencil attached to his right foot,
Bert Woodard taps out an e-mail to a friend, one laborious letter at a time, on
an oversize computer keyboard placed on the floor. His left foot maneuvers a mouse with a bright yellow softball-sized tracking ball. Woodard can't use his hands. His disease, amyotrophic lateral sclerosis (ALS), has robbed him of the ability to quickly rattle off an e-mail the way other people do. But Woodard is excited because he can use a computer, and because people at Thomas Hospital in Fairhope, where he is sometimes treated, raised the money to buy it for him. He doesn't dwell on the facts that he can't type, or breathe for very long without a ventilator, or eat, or talk when the ventilator is hooked up, or walk without support. Some four years ago, long before the ventilator, Woodard wrote - by dictating it - a handbook on living with the disease. He has not been able to get it published, but still hopes to be able to do so, or at least get it onto the Internet. "Try to be patient, and remember you have plenty of time to complete your task," he wrote. "Back off and give the muscles you are using a chance to rest. Stay calm and after about 10 or 15 seconds, try it again. You may not realize the muscles you are using are fatigued, because the rest of the body is functioning normally. However, when the time comes and you absolutely cannot do these things anymore, or cannot do them in a normal way, try to think of an alternative way of doing them..... "Do not linger on the things you can no longer do. Keep being thankful for the things you can still do and try to be content in knowing you are not less of a person because you cannot do certain things any more." In 1982, Woodard was working for an offshore construction company. That June, on vacation in the Ozarks, he flipped a three-wheeler, landing on the back of his head. Woodard injured his neck and, later that fall, back at work, he began having trouble screwing nuts and bolts with his left hand. Initially, Woodard wrote, doctors thought his problems were related to the accident. In June 1983, his hands began to shake when he was eating, and he had trouble striking a cigarette lighter with his right thumb. The doctor who finally diagnosed ALS told Woodard he had never seen the disease in anyone so young and he could not make a connection between the disease and the physical trauma of the accident. Now 42, Woodard was 25 years old at the time of the diagnosis. He was told he would be crippled and his life expectancy was two to five years. Is his positive attitude responsible for Woodard having beaten that five-year death sentence? "I know it is," said his mother, Lura Woodard, who takes care of him at his home in Satsuma. "His outlook on life - he loves life." Because Woodard lives on Social Security and disability retirement income from the company he was working for at the time of diagnosis, he said there isn't money for extras like a computer. He talks to friends on the telephone and each night helps his 12-year-old daughter with her homework. To speak, Woodard must be disconnected from the ventilator. His mother must carefully adjust his trachea tube so that he can both breathe and speak without choking. Still, each word comes slowly, and after a time, his breathing becomes audible. "I don't have a reason to be down. I mean, I have the best person I could possibly have taking care of me," he said. "The main thing with a situation like this is, after you've been diagnosed, don't start dying. That's why my book is called, 'Living With It, Not Dying of It.'" "Adjusting to physical changes will not always be easy. You will need to have patience with yourself and others. When you learn to take your time and adjust to struggling to do minor things, it will sharpen your concentration skills. If you concentrate solely on what you are doing, it takes your concentration away from the effects of your disease. I believe if you are not concentrating on the effects of your disease it will help put your disease in remission, or at least slow down its progress." ALS is more commonly known as Lou Gehrig's disease, named for the famed baseball player who died of it in 1941. It is a degenerative neurological disease affecting nerve cells of the brain and spinal cord. Considered a rare disease, ALS is characterized by a weakening and wasting of the voluntary muscles, leading to paralysis. According to standard descriptions of the disease, ALS is usually fatal in two to five years and almost always strikes after age 40. It does not affect intellectual functioning, but often begins, as it did with Woodard, with weakness in a hand. "I decided that I was not going to let anyone put a time limit on my life. I know my death, like yours, is inevitable. Technically, all of us are dying. But I had the unique opportunity to prepare myself and make peace with everything around me. Many people lose their lives instantly, and do not have the opportunity to prepare themselves for death. Take advantage of this opportunity and prepare yourself. You will find that as your life goes on, this will help prevent you from sitting around, wondering why this had to happen to you, and feeling sorry for yourself. It doesn't matter why it happened to you, the fact is it did happen to you." In many ways, Woodard uses his feet the way the rest of us use our hands, operating remote controls for the television and stereo in addition to running the new computer. "I've been using them for about 15 years," he said. "I learned how to play Nintendo with them, and that's how I got started using my feet." Pneumonia is a common complication of ALS and is usually what brings Woodard to Thomas Hospital, said Carolyn Dickinson, a nurse in the intensive care unit. He travels to Fairhope from Satsuma because his neurologist moved her practice there, and he must stay in the ICU because he and the ventilator need to be monitored closely. Woodard is also on a feeding tube. Woodard and Ms. Dickinson often talked about his desire for a computer. "Each time he came in here, we talked about it. I said, 'We need to do something about this,'" she recalled. Woodard has been an inspiration to his caregivers with his uplifting, positive attitude, Ms. Dickinson said. "Our little aches and pains are nothing," she said. "He wants to do something to help other people, and to inspire other people." After failing to get grants to defray the cost or a donation from a national company, Ms. Dickinson, hospital employees and doctors raised $1,400 to purchase the specially adapted computer, which Woodard received in October. "That was a big shock to me. I had no idea," Woodard said. Not only does he use his feet to send e-mails, surf the Net and play computer games, Woodard also composes letters regarding Medicare's reluctance to pay for all the trachea tubes he needs in the course of a day. He said he may write a postscript to his handbook, covering the period he's been on the ventilator. The ventilator, he said, has actually helped stabilize him and made him healthier. "I didn't start dying when I was diagnosed," Woodard said. "I'm going to live until I'm gone." "Death certainly becomes apparent when you have been diagnosed with a fatal disease such as ALS, so take care of any fear you have within yourself concerning death. Go ahead and get these thoughts clear in your mind, in your heart and in your spirit. After you do this you can really, LIVE! Put an exclamation mark behind LIVE. Underline the word LIVE. Have fireworks shooting above the word LIVE."  Photo: Woodard needs a ventilator to help him breathe, but it has improved his health. News Article Reprinted with permission from Jane Nicholes and the Mobile Register HOME Web site design and hosting furnished as a public service
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