When Diane Biddle woke up one December morning in 1990 with a stiff neck, she figured it would subside by the time she started her shift at the factory. Wrong. The ache never disappeared. It only worsened. Doctors, figuring she had arthritis, prescribed muscle relaxants and physical therapy, Eventually, she was diaghosed with what's called spasmodic torticollis. Her neck contorted so much that her head was yanked backward. Daily tasks such as writing, eating and showering became formidable. Walking became difficult. She gave up driving. And quit her job. "This is the most valuable thing I own," says the Racine woman, pointing to the neck brace that pulls her head forward so she doesn't have to constantly stare at the ceiling. "This affects every aspect of my life. My neck feels like it has run a marathon at all times. If I need to rest, I just lie down and put my head down." Spasmodic torticollis is a form of dystonia, the generic term for abnormal muscle tone. Torticollis translates to twisted neck. The disorder can permanently tilt a person's head to the front, back or either side. Why and how does this happen? Dr. Gary Leo, a neurologist with St. Joseph's Hospital in Milwaukee, explains it this way: The basal ganglia, the part of the brain responsible for automatic movement such as walking, is out of whack. That malfunction sends a message to the head and neck that they should be leaning one way or another. "Up until about 20 to 25 years ago, it was a psychological diagnosis," Leo says. The medical community blamed it on people reacting poorly to stress and their environment. "Now we know it's a movement disorder." A cure hasn't been pinpointed, he says. But there are four remedies that can be offered on a solo or mixed basis for relief: 1. Medications such as Artane or clonazepam can help block the improper messages going from the brain to the neck nerves and muscles. Side effects are a dry mouth, constipation and memory difficulties. ., ., .. .s Such treatment can cost up to $150 monthly, depending on the type of medicine. 2. Regimens involving relaxation, biofeedback and exercise can help sufferers because stress makes the condition worse. 3. A complex surgical procedure called denervation detaches nerves from the muscles so the improper messages can't be received from the brain. 4. Botulinum toxin, made from the bacteria that causes botulism, also offers pain relief because it weakens muscles so they can't act on the wrong messages the brain is sending them. In short, it stops the painful contractions. This treatment can cost at least $900 per doctor visit, and most patients go in for four injections annually. "It's a toxin with no side effects," Leo says about the treatment also known as BOTOX. "Sometimes people have trouble swallowing a little bit, but that tapers off. "We usually continue BOTOX treatments if people show a 50 percent improvement. Lessening the pain is what's important." Wisconsinite Dr. Edward Schantz originally developed BOTOX while serving in the U.S. Army at Fort Detrick, Md., during World War II. His mis- IHFO ymptoms of spasmodic torticollis usually first appear among people in their early to mid-40s. It's estimated that at least 85,000 Americans suffer from some form of the disorder. Three tunes as many women as men are diagnosed. Experts aren't exactly sure what stimulates the onset. Milwaukee neurologist Dr. Gary Leo says only about 5 percent of the people with spasmodic torticollis have relatives who also suffer from the disorder. "With 5 to 10 percent of the people, a traumatic event will trigger it," Leo says, adding that a severe blow to the head or shoulders area could cause the disorder. "For most people, it's something out of the blue." HELP IS AVAILABLE: A support group for those suffering from spasmodic torticollis meets at 1 p.m. the third Saturday of each month in Brady Hall at St. Mary's Hospital on Milwaukee's East Side. The next meeting is Saturday. The group has about 400 members in Wisconsin and Northern Illinois. Call 1-800-HURTFUL for more information. That's also the telephone number for the Mukwonago-based National Spasmodic Torticollis Association. sion was to create an antidote in case the enemy used germ warfare. After the war, Schantz continued experimenting with the toxin at the University of Wisconsin-Madison. In the early 1970s, he and Dr. Alan Scott of Smith-Kettlewell Research Foundation in San Francisco collaborated to create the form of BOTOX that relieves dystonia. Spasmodic torticollis sufferer Howard Thiel, 65, is grateful for Schantz's persistence. "BOTOX has given me back my life," says Thiel, about the turnaround he's experienced since beginning injections in January 1988. "I feel fantastic. Life is worth living again." Thiel, who recently moved from the Milwaukee area to Waupaca, goes to The Marshfield Clinic every three months for BOTOX. Before that, he traveled to Detroit and Vancouver for treatments. It costs him about $1,100 per visit. He found out about BOTOX after hooking up with a local support group for torticollis sufferers in late 1987. For the past five years, he has served as executive director of the National Spasmodic Torticollis Association. About 20 years ago, the former insurance agency owner noticed that his head kept tugging toward his left shoulder. Doctor after doctor he lost count after 18 told him it was nerves, stress and strain, a psychological problem or a temporary condition called wry neck. It took physicians more than eight years to figure out what was wrong with Thiel. By then, he was addicted to pills and alcohol in a vain attempt to numb the severe pain. Twice it drove him so close to the edge that he tried to kill himself. Remarkably, regular BOTOX treatments have allowed him to just about straighten his neck. No, he can no longer play golf or handball, but he can accomplish everyday tasks and drive as long as he doesn't have to parallel park. Thiel is aware that multitudes of those suffering from what he calls a disfiguring curse isolate themselves so they won't be ridiculed. "A lot of us bump and fall into things," - . he says. "And people gawk, stare and laugh at us." ' Biddle has found that a simple walk around the block can be dangerous because she can barely see where she's going. Fear of falling keeps her indoors for the most part. She can read or write for short stints before she tires. Even eating is an obstacle because she has to keep her food at arm's length just to make it visible. "After my diagnosis, I tracked down Howard," says Biddle, 52. "I heard his story and it helped me." She went in for one BOTOX injection, but says she can't afford the four-times-a-year treatments. She lives on rather paltry monthly disability payments from Social Security. Her hope is to have Medicare pick up at least a portion of the payments so she can regain the part of her life she's lost. For now, she spends hour after hour cooped up in her Howe Street apartment watching television and videos, puffing on cigarettes and studying the Bible with a friend. "I just try to cope from one day to the next," Biddle says. "And I pray a lot."
John McNamee
ELIZABETH H. McGOWAN Journal Times 13 Mar 1996
When Diane Biddle woke up one December morning in 1990 with a stiff neck, she figured it would subside by the time she started her shift at the factory. Wrong. The ache never disappeared. It only worsened. Doctors, figuring she had arthritis, prescribed muscle relaxants and physical therapy, Eventually, she was diaghosed with what's called spasmodic torticollis. Her neck contorted so much that her head was yanked backward. Daily tasks such as writing, eating and showering became formidable. Walking became difficult. She gave up driving. And quit her job. "This is the most valuable thing I own," says the Racine woman, pointing to the neck brace that pulls her head forward so she doesn't have to constantly stare at the ceiling. "This affects every aspect of my life. My neck feels like it has run a marathon at all times. If I need to rest, I just lie down and put my head down." Spasmodic torticollis is a form of dystonia, the generic term for abnormal muscle tone. Torticollis translates to twisted neck. The disorder can permanently tilt a person's head to the front, back or either side. Why and how does this happen? Dr. Gary Leo, a neurologist with St. Joseph's Hospital in Milwaukee, explains it this way: The basal ganglia, the part of the brain responsible for automatic movement such as walking, is out of whack. That malfunction sends a message to the head and neck that they should be leaning one way or another. "Up until about 20 to 25 years ago, it was a psychological diagnosis," Leo says. The medical community blamed it on people reacting poorly to stress and their environment. "Now we know it's a movement disorder." A cure hasn't been pinpointed, he says. But there are four remedies that can be offered on a solo or mixed basis for relief: 1. Medications such as Artane or clonazepam can help block the improper messages going from the brain to the neck nerves and muscles. Side effects are a dry mouth, constipation and memory difficulties. ., ., .. .s Such treatment can cost up to $150 monthly, depending on the type of medicine. 2. Regimens involving relaxation, biofeedback and exercise can help sufferers because stress makes the condition worse. 3. A complex surgical procedure called denervation detaches nerves from the muscles so the improper messages can't be received from the brain. 4. Botulinum toxin, made from the bacteria that causes botulism, also offers pain relief because it weakens muscles so they can't act on the wrong messages the brain is sending them. In short, it stops the painful contractions. This treatment can cost at least $900 per doctor visit, and most patients go in for four injections annually. "It's a toxin with no side effects," Leo says about the treatment also known as BOTOX. "Sometimes people have trouble swallowing a little bit, but that tapers off. "We usually continue BOTOX treatments if people show a 50 percent improvement. Lessening the pain is what's important." Wisconsinite Dr. Edward Schantz originally developed BOTOX while serving in the U.S. Army at Fort Detrick, Md., during World War II. His mis- IHFO ymptoms of spasmodic torticollis usually first appear among people in their early to mid-40s. It's estimated that at least 85,000 Americans suffer from some form of the disorder. Three tunes as many women as men are diagnosed. Experts aren't exactly sure what stimulates the onset. Milwaukee neurologist Dr. Gary Leo says only about 5 percent of the people with spasmodic torticollis have relatives who also suffer from the disorder. "With 5 to 10 percent of the people, a traumatic event will trigger it," Leo says, adding that a severe blow to the head or shoulders area could cause the disorder. "For most people, it's something out of the blue." HELP IS AVAILABLE: A support group for those suffering from spasmodic torticollis meets at 1 p.m. the third Saturday of each month in Brady Hall at St. Mary's Hospital on Milwaukee's East Side. The next meeting is Saturday. The group has about 400 members in Wisconsin and Northern Illinois. Call 1-800-HURTFUL for more information. That's also the telephone number for the Mukwonago-based National Spasmodic Torticollis Association. sion was to create an antidote in case the enemy used germ warfare. After the war, Schantz continued experimenting with the toxin at the University of Wisconsin-Madison. In the early 1970s, he and Dr. Alan Scott of Smith-Kettlewell Research Foundation in San Francisco collaborated to create the form of BOTOX that relieves dystonia. Spasmodic torticollis sufferer Howard Thiel, 65, is grateful for Schantz's persistence. "BOTOX has given me back my life," says Thiel, about the turnaround he's experienced since beginning injections in January 1988. "I feel fantastic. Life is worth living again." Thiel, who recently moved from the Milwaukee area to Waupaca, goes to The Marshfield Clinic every three months for BOTOX. Before that, he traveled to Detroit and Vancouver for treatments. It costs him about $1,100 per visit. He found out about BOTOX after hooking up with a local support group for torticollis sufferers in late 1987. For the past five years, he has served as executive director of the National Spasmodic Torticollis Association. About 20 years ago, the former insurance agency owner noticed that his head kept tugging toward his left shoulder. Doctor after doctor he lost count after 18 told him it was nerves, stress and strain, a psychological problem or a temporary condition called wry neck. It took physicians more than eight years to figure out what was wrong with Thiel. By then, he was addicted to pills and alcohol in a vain attempt to numb the severe pain. Twice it drove him so close to the edge that he tried to kill himself. Remarkably, regular BOTOX treatments have allowed him to just about straighten his neck. No, he can no longer play golf or handball, but he can accomplish everyday tasks and drive as long as he doesn't have to parallel park. Thiel is aware that multitudes of those suffering from what he calls a disfiguring curse isolate themselves so they won't be ridiculed. "A lot of us bump and fall into things," - . he says. "And people gawk, stare and laugh at us." ' Biddle has found that a simple walk around the block can be dangerous because she can barely see where she's going. Fear of falling keeps her indoors for the most part. She can read or write for short stints before she tires. Even eating is an obstacle because she has to keep her food at arm's length just to make it visible. "After my diagnosis, I tracked down Howard," says Biddle, 52. "I heard his story and it helped me." She went in for one BOTOX injection, but says she can't afford the four-times-a-year treatments. She lives on rather paltry monthly disability payments from Social Security. Her hope is to have Medicare pick up at least a portion of the payments so she can regain the part of her life she's lost. For now, she spends hour after hour cooped up in her Howe Street apartment watching television and videos, puffing on cigarettes and studying the Bible with a friend. "I just try to cope from one day to the next," Biddle says. "And I pray a lot."