Robyn Davis Sekula

Package of four stories, plus boxes, on Parkinson’s Disease; includes three profiles of people living with Parkinson’s Disease

Stories appeared in a business journal

Stories by Robyn Davis Sekula

Louisville, Ky | June 2007

Carrying on the fight against Parkinson’s

Dr. Irene Litvan has spent her career trying to improve the diagnosis of Parkinson's disease in patients.

Litvan, the Raymond Lee Lebby professor of Parkinson's disease research and director of the movement disorder program at the University of Louisville, became interested in the topic while working at the National Institutes of Health in Bethesda, Md. She began her career studying memory and how memory works.

In the course of doing clinical trials, Litvan had several patients with Parkinson's disease. The trials didn't go quite as she expected, and that's when she began to think more about how Parkinson's disease is diagnosed and treated.

Litvan's clinical practice is at Frazier Rehab and Neuroscience Institute.

Intrigued by research results

“Whenever you study something, you get more questions than answers,” Litvan said. “The patients did not improve as I expected, and I began being concerned about how we are

making the diagnosis.”

Parkinson’s disease is a neurological disorder, Litvan said. “The nerves in the brain die slowly,

faster than when we are aging,” Litvan said. “We don’t know why the nerves die. Certain areas of the brain die that have to do with the motor system. One particular area has to do with how quickly we move, how stiff we are, and it affects other areas that may lead us to have tremors.”

In 90 percent of cases, Parkinson's is a “sporadic” disease for which there is no known cause,

but multiple factors could be involved, Litvan said. Age is a main factor. As the frequency of Parkinson's increases with age, and environmental factors such as pesticides, particularly rotenone, also are a cause.

In the other 10 percent or so, she said, familial and genetic factors are involved. Parkinson’s disease does not result from an accident, such as a blow to the head, but someone can develop Parkinson’s-like symptoms from repetitive head injuries.

Difficult to nail down

Parkinson’s disease is particularly tricky to diagnose, Litvan said, because it can manifest itself in many different ways. Though the public often associates it with tremors, that’s only a small part of how the disease can affect patients.

Patients have trouble moving their arms and legs, develop a stooped, stiff walk, have a soft voice or even lose the ability to speak. They also could find their handwriting reduced to a scrawl. Some patients lose their sense of smell or have difficulty swallowing. Not all of the symptoms show up in all patients, and anyone of the symptoms could be the first telltale sign of Parkinson’s.

Doctors in a variety of specialties can see the symptoms but misdiagnose a patient with Parkinson’s because they lack experience with the disease. Litvan said one of her patients

was told by a psychiatrist that his inability to move his arm was a mental problem. As it turns out, that was a warning sign of Parkinson's disease.

Currently, UofL is participating in five drug trials related to Parkinson’s disease, two of which are for drugs that have been approved and three of which are for drugs that are going through that process, she said.

An additional UofL study funded by the National Institutes of Health is looking at genetic abnormalities in families to try to understand what causes Parkinson’s in successive generations. Another NIH-funded study will look at how to slow the progression of the disease. Litvan hopes the studies will lead to better, more consistent diagnosis of Parkinson’s and better treatment for those living with the disease.

Without a proper diagnosis, Litvan said, patients can’t obtain the medication they need or participate in studies that might help them, It’s also important to have the correct diagnosis early to begin taking the right medications, Litvan said. If the disease is caught and treated quickly, patients tend to fare better. “There is an incredible array of medications that have improved (Parkinson's) symptoms right away,” Litvan said. “Some have the possibility of protecting the body from further symptoms.”

Dr. Irene Litvan (BOX)

Title: Raymond Lee Lebby professor of Parkinson’s disease research and director of the movement disorder program, University of Louisville School of Medicine

Education: Medical doctor, Universidad de la Republica, Montevideo, Uruguay

Career history: Litvan, a native of Uruguay, started her career in Spain and came to the United States in 1986 to work for the National Institutes of Health. She came to the University of Louisville in 2004 as part of the Bucks for Brains, or Research. I Challenge Trust Fund, initiative.

PROFILE 1

Disease causes McLeod to make changes with a creative flair

For nearly 30 years, Carol McLeod has lived with some of the symptoms of Parkinson’s disease, but it wasn’t until 10 years ago that she had a name for it.

When she was in her 20s, McLeod, now 57, developed a tremor in her foot that she believes probably was part of her Parkinson’s.

The tremors got worse, and she developed a stiff walk by the time she was in her late 40s, and she also began to feel that she was losing some of her memory.

She avoided doctors in general because she was afraid she had Alzheimer’s disease and didn't want to deal with that possibility.

“By the time I did go. it took him less than two minutes to diagnose me with Parkinson’s,” McLeod said.

McLeod was shocked by the diagnosis. But she vowed to fight the effects of the disease as much as she could. She takes Requip, which staves off tremors but makes her sleepy, and also Provigil, which keeps her from falling asleep. Vitamin E and Coenzyme Q-lO are supplements she takes.

Crafting a richer life

McLeod also has developed a few new hobbies, such as playing the harmonica and designing Web sites to exercise her brain.

“I was less functional 10 years ago than I am now,” McLeod said. “My doctor thinks, and I think, too, that your brain can learn to get things done if you push it.”

McLeod works primarily as an artist. And she has woven Parkinson’s into her work as a theme from time to time. Her painting called “Five More Years” depicts faces and a clock. It symbolizes the amount of time doctors have told her she has before the disease really affects the quality of her life and also the amount of time some believe will be needed to find a cure for Parkinson's.

McLeod and several other artists recently participated in the Parkinson’s Art Hop, a fund-raiser for the Parkinson’s Support Center in Louisville.

Looking ahead

McLeod has made some major lifestyle decisions, knowing that the debilitating effects of Parkinson’s could find her in a few years. After her husband was killed in a car accident in 2002, she decided to move to the Highlands from her home in Union, a rural Northern Kentucky community. Her home there had almost two acres of land, and that was too much for her to keep up. Also, she knows that she might not be able to drive in a few years, so McLeod wanted a location that would allow her to walk to restaurants, shops and other amenities. The Highlands has suited her well.

McLeod takes her medication and supplements religiously, and she is aware of the effects of the disease. She avoids stressful situations, which can trigger tremors, and she types rather than handwrites notes. As one of the “quirks” of the disease, Parkinson's patients often notice that they don't swing their arms when they walk, so McLeod tries to make sure that she does that in order to provide a more natural gait as she walks.

She refuses to give in to the disease.

“I'm too curious to stay home and too curious to stay in bed,” McLeod said. “I expect to go do things. so I get up and go do them. I don't want to miss anything."

PROFILE 2

Diagnosis leads Speer to re-evaluate his life

Alexander “Sandy” Speer wants the public to understand one thing about his much-publicized retirement as executive director of Actors Theatre of Louisville in April 2006.

He didn’t retire because he was diagnosed with Parkinson’s disease. He retired because he was ready - and it just so happened this was after he was diagnosed with Parkinson's disease.

Speer, 63, noticed about four years ago that he was having trouble moving his left arm. He went from doctor to doctor, and he had “every test known to man” to determine what was wrong.

Speer’s neurologist finally concluded he had indications of Parkinson’s disease, which in his case was an absence of expression in his face and inability to move his arms as freely as he liked.

As time progressed, he's noticed other changes, including a shuffling walk, a soft voice and handwriting that is diminishing to a small scrawl.

Coming to terms with the disease

The diagnosis was a shock. Speer said his first inclination was to keep it secret. His doctor assured him he had 20 years left to live, but to Speer, that wasn’t enough.

“At first, I was just not interested in sharing that information with anybody,” Speer said. “Then, I decided that was stupid. It was a way of not dealing with it.”

The diagnosis made Speer evaluate his life. He had been thinking of retiring anyway to spend more time hunting for antiques, which is his passion, and gardening.

Speer said that if he wanted to, he probably could continue to work. But retirement suits him well. For the current time, he’s turned down job offers and requests to volunteer. He enjoys his life in Goshen, visiting with family and friends on occasion. He considers his condition stable for now.

Making minor modifications

Speer still drives, though he avoids night driving. He gardens, though the kneeling and stooping it takes to tend to his garden are hard on his body.

Mirapax, a drug commonly given to Parkinson’s patients, has helped slow the progression ofParkinson’s, but it’s brought on sleepy spells that have him sometimes battling to stay awake.

Speer lives in a federal-style, 1813 brick home in Goshen, Ky., that he’s remodeling to help accommodate the affects of Parkinson’s. The two-story home needs a first-story bathroom, Speer said, so he won’t have to navigate the narrow, steep staircase very often. He also has help to get the household chores done, including laundry and cleaning.

Any activity that requires fine motor skills, such as buttoning buttons, are more difficult for Speer. Threading a needle is almost impossible, Speer said.

“Getting ready in the morning takes twice as long as it used to,” Speer said. “These are all minor things, but they add up.”

PROFILE 3

Baumann draws on strong will, delivers at Steel Technologies

Little did he know it, but John Baumann’s body was trying to tell him something the day he couldn’t accurately putt on the golf course with his right hand.

The golf pro he was working with had him switch hands, and he was back to his bull's eye aim of golf ball in the hole. That was five years ago.

A year after that, Baumann, who is general counsel and secretary at Steel Technologies Inc., noticed his right arm didn’t swing when he walked. He attributed that to an old soccer injury, and he went to the surgeon who worked on his arm to ask whether it might be nerve damage. The surgeon said no and told him he didn’t know what was wrong.

Then Baumann noticed his handwriting was getting smaller and smaller, and more illegible, and on the day of an important argument before a federal court in Chicago, he discovered he couldn’t write. That was when he decided he needed to find out what was going on, and later that same year, in 2003, he was diagnosed with Parkinson’s disease.

Diagnosis brings worry, fears

In his early 40s at the time and only 46 now, Baumann had never considered that possibility. His first thoughts were for his family.

Would he be able to work and support his wife, a stay-at-home mom, and their two children?

But Baumann started researching Parkinson’s and trying to find ways to combat the disease, which is a progressive, neurological disorder.

Despite his fears, Baumann told his boss and the board of directors of Steel Technologies that he had Parkinson’s. “I know, rightfully so, that I was watched a lot closer for that next year,” Baumann said, but he performed his duties as usual, with some modest modifications.

Making adjustments at work

Baumann doesn’t take notes in meetings anymore because he can't read his own handwriting.

Instead, he listens intensely, and then goes back to his office and types a memo outlining what was said.

He also hires outside counsel for important, higher-level arguments in court. As he sees it, that was never his expertise anyway, so it makes sense to farm it out to someone who argues in front of such courts every day. He exercises religiously, almost every day, in a corporate gym at Steel Technologies on a variety of cardio machines, and he follows a highly regimented schedule

of medicines and nutritional supplements, such as Vitamin E, Coenzyme Q-1O and Carbidopa-Levodopa, a drug commonly used to treat Parkinson's disease.

These measures have allowed him to continue to work. In 2006, Steel Technologies completed the sale of a company in March and the purchase of another in May, and he managed the workload.

“You get a curve ball thrown at you, and you have to make the decision if you can catch it,” Baumann said. “If you are able to perform, you gain the confidence of those you work with."

He also was the legal member of the five-person team that prepared Steel Technologies to be acquired by Tokyo-based conglomerate Mitsui & Co. Ltd. The deal was signed in February and was approved by Steel Technologies shareholders in late May. He led and coordinated the legal documentation negotiation and due diligence in the deal.

This was “one of my most proud professional accomplishments. I was in a performance zone uninhibited by Parkinson's,” he wrote in an e-mail.

HOW PARKINSON'S PROGRESSES (BOX)

Parkinson's disease is a brain disorder. It occurs when certain nerve cells (neurons) in the brain die or become impaired. Normally, these cells produce a vital chemical, dopamine, which allows smooth, coordinated function of the body's muscles and movement. When about 80 percent of the dopamine-producing cells are damaged, the symptoms of Parkinson’s disease appear.

SUPPORT OFFERED (BOX)

About 4,000 people in the Louisville area have Parkinson's disease, and the Parkinson's Support Center of Kentuckiana is there to help, Its Web site is www.pscky.organdthe phone number is 426-0888.

The center came into existence in 2000 after a Derby Eve ball fund-raiser was held to fund the center. Vicki Stanley is the executive director and its only staff member, The center offers educational seminars, exercise classes, a library of materials and support groups. Since 2004, the Parkinson's Support Center has been housed in the Jewish Hospital Neuroscience Center, 4912 U,S. Highway 42, and it has raised more than $500,000 for research, including matched funds.

ABOUT PARKINSON'S (BOX)

It was first described in 1817 by Dr. James Parkinson, a British physician for whom the disease was named.

There is no X-ray or blood test that can confirm Parkinson’s disease. A physician arrives at the diagnosis only after a thorough examination.

Blood tests and magnetic resonance imaging (MRI) brain scans may be performed to rule out other conditions that have similar symptoms.

People who think they might have Parkinson's disease should consider seeking the care of a neurologist who specializes in Parkinson's disease.

RED FLAGS FOR PARKINSON’S (BOX)

Signs and symptoms: Tremors; slowness of movement; rigidity; difficulty with balance; small, cramped handwriting; stiff facial expression; shuffling walk; muffled speech; depression

Who gets Parkinson's disease: Parkinson's disease affects both men and women in almost equal numbers. It shows no social, ethnic, economic or geographic boundaries. Although the condition usually develops after the age of 65, 15 percent of those diagnosed are under age 50.

How many cases: In the United States, it is estimated that 60,000 new cases are diagnosed each year, joining the 1.5 million Americans who currently have Parkinson's disease.