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Casey Campbell | Gazette-Times
Dorothy O’Brien has been a medical librarian for over a decade, using her skills to do research in medical books and journals for doctors and nurses.

Medical librarian an ALS advocate
By THERESA HOGUE
Gazette-Times reporter


Dorothy O’Brien has always loved reading, researching and spending time near books. So it was natural for the English major to become a career librarian, combing the stacks for years, from public libraries to school libraries.

For more than a decade, O’Brien has worked as a medical librarian. She started in Gillette, Wyo., and since 1999, she’s been a medical librarian at Good Samaritan Regional Medical Center. Medical librarians do very specific research for doctors and nurses in clinics and hospitals, helping them to find journal articles and papers on everything from the latest surgical techniques to new diseases.

“The most fulfilling part of this job is when doctors call and say ‘the information you’ve provided has really helped this patient,’” O’Brien said.

But O’Brien applied her medical research skills in a personal way two years ago, when she started having some strange symptoms. Her leg muscles began to cramp and ripple, and she was having odd feelings in her limbs.

When the sensations didn’t go away, she began looking in neurology books to find out what her symptoms might mean. She realized that some of them sounded like the degenerative neurological disease ALS (Amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, but she took comfort in the fact that she wasn’t experiencing the muscle weakness that marks ALS. That is, until one morning when she was getting ready for work.

“I was trying to button my pants, but my left hand wouldn’t work,” she said.

Doctors initially dismissed her self-made diagnosis of ALS.

“They said ‘Oh, I don’t think so,’” O’Brien recalled. But in April 2007, an official diagnosis confirmed what she’d long suspected. And in this case, knowledge meant facing a daunting future: ALS affects the brain and nervous system. It has no known cure. There is only one medicine currently available for ALS patients and, at most, it extends life by a few months. Many ALS patients eventually become paralyzed, and the degeneration of the nervous system leads to death. The swiftness of the progression varies from patient to patient.

O’Brien now uses a wheelchair and a walker to get around. After resigning her job shortly after her initial diagnosis, O’Brien has since returned to the work she’s always enjoyed, but only for about eight hours a week. She’s doing what is possible, and then some. She’s taking medication, and she participates in alternative therapies, including acupuncture and studying with a Yogi.

Her illness is evident in the deliberate way that she forms her words, as her agile mind works to force faltering throat muscles to communicate clearly. O’Brien is thinking ahead, recording words and phrases that she later can use in a voice projection system when she can no longer speak.

Right now, she’s doing a lot of speaking for other people with disabilities as a member of the advisory board for the Oregon Public Utility Commission’s Telecommunication Device Access Program. She meets with other groups to advocate for those with speech impairments. She recently won the Robert Ross MDA Personal Achievement Award for Oregon, which she said was an honor. But she downplays her role as an advocate: She’s only been disabled for a year, she points out, while many of the people she’s met this past year have coped with disabilities all their lives.

O’Brien also is an outspoken advocate for the benefits of having a publicly accessible medical library, such as the one at Good Samaritan Regional Medical Center. She said most people don’t realize that they can either drop into the library during business hours or contact librarians with their medical research questions. They can receive help and even check out videos on medical procedures and conditions.

Even when the information is troubling, O’Brien believes that knowledge is power.

The Murray Memorial Library, at Good Samaritan Regional Medical Center is located on the first floor of the center, and is open Monday through Friday, 8 a.m. to 5 p.m.

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