Portlander searches for years to find why her body was deteriorating

03/29/12  Portland, Ore.

OHSU conference speaker saw a range of experts before diagnosis of rare Parkinson’s-like disorder

Labby will speak at the Parkinson’s conference at 10:15 a.m., Saturday, April 7, at the OHSU Auditorium on OHSU’s Marquam Hill campus.

For years, Portlander Lee Ann Labby wondered what was wrong with her.

And for years, the long line of doctors she saw had no idea.

Labby’s health problems started in the late 1990s, when she began having bizarre sleep patterns. While she was dreaming, when the human body is usually paralyzed, her body moved to act out her dreams.

The more significant issues began in the summer of 2005, when she started having problems with her balance and equilibrium. She began having trouble emptying her bladder. Then her balance issues grew worse.

During the next five years, as her health problems worsened, she saw doctor after doctor, who ordered test after test. Neither the doctors, nor the tests, offered any answers.

“I began to think I was crazy — that it was a psychosomatic disorder,” said Labby. “But it was getting worse. I had something seriously wrong with me but nobody was seeing it.”

Then, in August 2010 — after a recommendation from a University of Pennsylvania Parkinson’s specialist she happened to meet at her son’s college graduation party — she went to see Dr. John Nutt in the Parkinson Center of Oregon at Oregon Health & Science University.

After an hour examination, Nutt had an answer for Labby — a painful answer. Labby had a rare Parkinson’s-like disease called multiple system atrophy, or MSA.

In MSA, nerve cells in specific areas of the brain degenerate, causing problems with movement, balance and other basic functions of the body. It’s very much like Parkinson’s — except the deterioration is much worse and much quicker. And the disorder is much more rare — overall prevalence of MSA is estimated at five cases per 100,000 people, compared with about 200 per 100,000 people who have Parkinson’s. People who have MSA usually die within seven to nine years of diagnosis.

Even so, Labby had some level of satisfaction at finally getting an answer.

“MSA can show a variety of symptoms that can take a patient to a multitude of different medical specialties without any real answer,” said Nutt, director of the Parkinson Center of Oregon at OHSU who has studied and treated Parkinson’s and related diseases for more than 30 years. “She was to some extent relieved that there was finally a diagnosis and that she was not ‘crazy.’ It brings some peace to know that you do have something that has a name and that explains all of these features that seem to be unrelated.”

There was a practical effect as well, said Labby.

“It was not a good diagnosis but at least it allowed me to access some health services,” she said. “And it finally gave me a community of people who understood what I was going through.”

Labby wants more people to understand MSA – including, and especially, the medical community. Since her diagnosis, Labby’s focus has been to expand awareness of the disease.

She will be a featured speaker at a two-day conference, April 6 and 7, at the Parkinson Center of Oregon that will train therapists on how to help people deal with Parkinson’s disease and the more severe “PD Plus” diseases like MSA.

And Labby, her friends and family have contributed money to an education outreach effort of the Parkinson Center to help more people understand MSA.

The common denominator among members of the MSA support group with which she has become involved is not symptoms or treatments, “but that we visited so many doctors before we got a diagnosis,” Labby says. “You can go five years or more before you get a diagnosis. And during those five years, people’s physical abilities are declining. What I would hope is that the medical community, especially doctors, would be more aware of it.”

Even while she gets physical, speech and exercise therapy that help some of her symptoms, Labby’s overall health continues to deteriorate.

“I was maintaining OK until probably two or three years ago,” she says. “It's now starting to take more of a toll. Just moving and walking has become more difficult.”

Still, says Julie Carter — who is associate director of the Parkinson Center of Oregon and who, along with Nutt, has treated Labby — “she never once has felt sorry for herself. To me, she epitomizes resilience. She doesn’t want people feeling sorry for her. She just wants to work to be the best she can.” As further evidence that she is a fighter, Labby has also volunteered for an MSA research study examining a treatment to slow the progression of the disease.

Note to editors: Lee Ann Labby is available for interviews prior to and after the Parkinson’s disease conference.

About OHSU

Oregon Health & Science University is the state’s only academic health and research university. As Portland's largest employer with nearly 14,000 employees, OHSU's size contributes to its ability to provide many services and community support not found anywhere else in the state. OHSU serves patients from every corner of Oregon and is a conduit for learning for more than 4,300 students and trainees. OHSU is the source of more than 200 community outreach programs that bring health and education services to each county in the state.