Word: postpolio
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...eyes to see five federal agents pointing assault rifles at my head. 'Get your hands over your head. Get up. Get up.' I took the respirator off my face, and I explained to them that I'm paralyzed," said Suzanne Pheil, 44, who is disabled by the effects of postpolio syndrome. Her story was broadcast everywhere, since the pro-pot people had basically been waiting for her to be harassed, punching every phone number on their media list minutes after the raid. Pot people, surprisingly, can move pretty fast when they want...
What can be done to help the postpolio sufferers? Not much, unfortunately. There are only experimental treatments. A steroid called prednisone, usually used to treat immune-system diseases like multiple sclerosis, seems to help in postpolio as well, reducing fatigue and increasing endurance. And Dr. Marinos Dalakas at the National Institute of Neurological Disorders and Stroke is experimenting with nerve growth factor, a protein that spurs the proliferation of nerve axons...
...most effective therapy seems to be no therapy at all. Postpolio sufferers are simply advised to take it easy -- to pace themselves, listen to their body and avoid activities that cause them pain. Dr. Halstead, who uses a motorized scooter instead of walking long distances, calls this "babying the motor neurons." His clinic uses sophisticated electromyography equipment that charts the activity of muscle and nerve cells in order to design exercise regimens tailored to each patient's particular weaknesses. The approach is almost the exact opposite of "use it or lose it." Says Dr. Jacquelin Perry, director of the pathokinesiology...
...many patients, postpolio means having to take up the braces and wheelchairs they worked so hard to escape. Stanley Lipshultz, a Washington trial lawyer, is just starting to use the crutches his doctor prescribed. "I had a handicapped license plate on my car for two years before I actually used a handicapped parking space," he confesses. "The hardest part is you feel you're falling apart," says Rena Shnaider, a retired rehabilitative counselor from Oakland, California, who has spent her life in a wheelchair but who drove a car, went to college and had enough control over her body...
...there is a bright side to postpolio syndrome, it is that the illness gives many patients an opportunity to come to terms with feelings they repressed for decades. For many, seeing those braces again stirs memories from the '50s, when they were pulled out of school, sent away for treatment and then brought home to face insensitive peers. "You remember that while everyone else was out playing football, you were watching and wishing you could be with them," says Lipshultz. Through support groups and counseling, many polio survivors are for the first time putting those unpleasant memories behind them. "Many...