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Al
Butler beating odds against ALS Two and a half years since being diagnosed with amyotrophic lateral sclerosis, often referred to as “Lou Gehrig’s disease,” Al Butler is driving around, joining his grandson on the boat, enjoying the usual summer’s chaos of visits from family, and doing odd jobs around the house. That’s no small miracle, given the disease’s typical progress, which was expected to leave him paralyzed by this time. Al and his wife, Gloria, credit Dr. Rene Espy for keeping the disease at bay. “I honestly feel that if I weren’t going to Dr. Espy I’d be much worse off,” Mr.Butler says. He
travels to Mr. Butler was diagnosed with ALS in December 1999. A progressive neurodegenerative disease, it attacks nerve cells in the brain and spinal cord, leading to the progressive degeneration of motor neurons that reach from the brain to the spinal cord and from the spinal to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With all voluntary muscle action affected, patients in the later stages of the disease become totally paralyzed. Through it all, for the majority of people, their minds remain unaffected. With
no hope of conventional medical relief from the devastating illness, the Dr. Espy’s treatment focuses on kinetic muscle work, involving the use of an instrument which generates a range of microcurrent frequencies to different areas of the body. According to Dr. Espy’s Web site, the method used is called “Body Integration,” a diagnostic and treatment method “whereby the body is seen as a living, biological computer with numerous, complicated functions and an unfathomable data bank. The treatment is combined with a food equivalent system called the Zone Diet, designed to balance protein, carbohydrate, fatty acids/oil, and fluid intake, which in turn improves vitality and well-being. The system demands attention to the type of food being consumed and its role in supporting the metabolism. Mr. Butler also takes an EPA/DHA supplement intended to increase blood flow to the affected areas and help boost his immune system. A neurologist who early on confirmed Mr. Butler’s diagnosed predicted that, within a year at least his right arm would be paralyzed. The disease’s characteristic weakness began in his right hand. At the time, the couple were thinking about how to make the house handicapped-accessible and contemplating the prospect of Al’s living with a breathing apparatus and feeding tubes. But with Dr. Espy’s help, things have held pretty steady. Gloria has changed her shifts at Harbor House; she works now in the evening so she can stay home with Al during the day, keep him company, and help him with the chores he aims to do. “Luckily, we’re pretty optimistic people,” she says. Still, the situation has been a strain on their relationship, especially when Al can’t hold off his depression. Sometimes he just kind of drifts off, and Gloria has to call him back to the present. “Bitter, ugly,” he says. “I’m sure most people would say the hell with it. With other diseases like cancer, at least you kind of know how long you have. But with this, you don’t know if you have one day or one year or what.” “His attitude definitely affects mine,” Gloria says. “I find now that if I have those days, I just have to go through it,” he says. Al’s speech is slurred but still easily intelligible. His most debilitating problem is the weakness of his hands and arms. A master carpenter, cook, and fisherman who loved his active life, he has trouble now manipulating his tools. Still, he comes up with tricks for some things. Unable to hold the safety bar on the lawnmower, he crooks a leg over the bar so he can use both hands to pull the cord. A special button-hooker lets him get dressed by himself in the morning. “What bothers me most is my grip,” he says. He can’t grasp normal workaday things – wheelbarrow, shovel, paintbrush, hammer, etc. “A 1-year-old kid could pull my fingers apart,” he says. Before she changed shifts, Gloria says, she’d go home to find him waiting for someone to come by, to help him with some home-repair task. “He doesn’t want to just sit there in his recliner,” she says. “That’s the way it goes,” Al says. “Life goes on.” On the couple’s Web site (www.albutler.com), Gloria keeps people updated with Al’s treatment. The regimen isn’t easy to stick with, not least because of the depression that can overwhelm him. “As long as you keep busy, you don’t think about it,” he says. “But there are definitely days that are down. Gloria wrote last October that he had stopped the supplements Dr. Espy had prescribed. She continues: “I didn’t realize it for about a month until he started to get bad spasms through his body again and slurring his words more. I guess he decided to go without. Taking the fish oil is the part he hates the most. He says it smells like fish bait. In addition, he said he wasn’t going back to Dr. Espy because it cost too much. I knew I needed to turn him around, so we had a long talk. I reminded him that the money has been raised so he can afford to go for these treatments. I would rather see the fund spent on preventive medicine that seems to be helping him and rejuvenating the muscles and nerves that he lost than to wait and use it when he is worse, in a wheelchair, on breathing and feeding tubes, etc. Why fool around with something that is working?” To force him to start again, she threatened to take Valium “because he obviously has made a decision to give up and …I am going to need something to get through all this. He said, “All right, I’ll be better. I can’t imagine you on Valium; you are flaky enough.” Dr. Espy says her goals to boost the body’s own ability to heal and maintain itself, through proper nutrition and care, and to promote blood flow and nerve transmission so muscle tone and function are strengthened. In a typical ALS situation, she says, “he’d be almost debilitated by now.”
The
At this point, though, the
fund is running low. In order to
help Al continue treatments, donations may be made to the Al Butler Fund, Bar
Harbor Banking and Trust,
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