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Cindy Schmidt, M.D., of the McGoogan Library of Medicine assists Kathleen Newman, who frequents the library to do research on dystonia. |
It’s the one place where she can go to while away the time between doctor visits and search for answers to the debilitating disorder that’s taken over her life.
In 1993 Newman developed dystonia, a neurological movement disorder affecting the muscles, two weeks after suffering a back injury.
A special education teacher who worked for the Lincoln Public School District, Newman became totally disabled in 2001, losing her job because of the constant pain the disorder causes her.
“Sometimes the spasms feel like the muscles are going to tear right off the bones,” said Newman, who walks with a cane and wears a neck brace. “Some days it’s all I can think about.”
The disorder can cause uncontrollable twisting. It has caused Newman’s head to slowly turn to one side of her body and raised her right shoulder as if she were shrugging.
As a teacher, Newman was hungry to understand all she could about the disorder.
What is dystonia, she wondered?
She found what she was looking for through the Consumer Health Information Resource Service, (CHIRS), a free service offered by the McGoogan Library of Medicine at UNMC.
“What I’ve learned about my disease allows me to communicate more effectively with my doctors,” Newman said.
For example, after undergoing a lumpectomy several years ago, Newman woke up from the procedure only to find her dystonia had gotten worse.
“I went straight to the McGoogan Library to find out why and with the help of the medical librarian did a search on the effects of anesthesia on people with dystonia,” Newman said.
What she discovered was not only enlightening, but helpful.
“I found out that some people develop dystonia after they’ve had general anesthesia,” she said. “Now I’m very careful to talk with my doctor or dentist about any procedure involving anesthesia.”
Through her research at the McGoogan Library, Newman also learned about the variety of ways in which dystonia afflicts other people.
Most of the people with dystonia that Newman knows have had it come on spontaneously, for no apparent reason, she said. Only a small number develop the disorder due to trauma, she said, and certain activities seem to set it off.
“There are trumpet players who have dystonia of the mouth, or pianists who have it in their hands,” she said. “I have focal dystonia, which means it affects specific parts of my body, such as my neck and shoulder.”
While dystonia is not a fatal disease, there is no cure.
Without the help of the medical librarians and the CHIRS service, Newman said she would not know as much as she does.
“Information is comforting,” Newman said. “At least I understand the disorder and don’t feel like I’m left in the dark not knowing what is happening to me.”
When Newman first started going to the McGoogan Library, she felt sheepish, as if she wasn’t supposed to be there.
“I thought it was just for the med students and that I was sneaking in,” she said, laughing.
Now she’s not only looking up articles on her ailment, but on the problems of others, as well.
She acts as the researcher for the Nebraska Dystonia Support Group, writing articles for the newsletter and answering questions sent in by readers, using CHIRS as her main resource.
Newman said she carries a stack of cards with the CHIRS contact information in her purse just in case she runs into someone at the doctor’s office or in the grocery store.
“Because of my condition people will often strike up a conversation with me and ask what happened. When I explain the disorder to them, they are always surprised by how much I know. I tell them I learned it through CHIRS,” said Newman. “I probably make three referrals a week to the service and never had a single person disappointed.”
Newman said the UNMC librarians are good at providing the information needed at a level the consumer can understand.
“You don’t have to go to the library of medicine to access the service, either,” she said. “They have a toll free phone number, a Web site and e-mail, so everyone in the state can use CHIRS.”
In 2004, the CHIRS program was recognized by the U.S. National Commission on Libraries and Information Science (NCLIS) with a blue ribbon for providing accurate, useful consumer health information to the people of Nebraska.
“The CHIRS program exemplifies the role libraries can play in increasing awareness of consumer health-related issues and encouraging healthy lifestyles,” said Rod Wagner, director of the Nebraska Library Commission.
The McGoogan Library has further expanded its consumer-oriented services with Go Local Nebraska, an initiative between the National Library of Medicine, the McGoogan Library and public libraries across the state of Nebraska.
The free service features Web sites, contact information and service descriptions for hospitals, physicians, nursing homes, support groups and many other health resources.
“If a person wanted to know where to find the nearest diabetes clinic, physician or support group in their community all they would need to do is go to the Go Local Nebraska Web site and do a search,” said Marie Reidelbach, associate director of the McGoogan Library of Medicine.
It’s another resource that Ted Smith, director of the Norfolk Public Library, is happy to have.
“The addition of Go Local Nebraska and Medline Plus is going to allow us to provide immediate information to our customers, something they can take home right away, while we do a more intense search through CHIRS,” Smith said.
For Newman, it’s another tool in helping her cope with a disabling disorder.
“I’m an educator, it’s my passion,” she said. “I loved my job. I miss it. My life’s goal is to get back to teaching. Thanks to CHIRS, I’ve been able to help myself and others.”
For more information, or to request health information through the CHIRS program, visit the McGoogan Library Web site at www.unmc.edu/library or call the Reference Desk at (402) 559-6221 or toll-free (866) 800-5209.