Hizzonor on 'Boss' may be fanciful, but the disease is for real


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Chicago Mayor Tom Kane jumps out of his city staff car and explodes in anger over the deep pothole in the middle of the street. Except there is no pothole.

Without warning, he barks at his staff. At other times he sits at this desk, quietly mumbling. He holds conversations with the imaginary Ezra Stone, the top mayoral aide he had killed. His hand sometimes shakes, or his body freezes in a contorted position on the floor.

Tom Kane is just a character played by Kelsey Grammer on the acclaimed Starz drama "Boss," which wraps up its second season at 9 p.m. Friday. But the progressive disease that Kane is diagnosed with in the first episode -- Lewy body dementia -- is real. Because symptoms mirror those of Alzheimer's, Parkinson's or other conditions, it's often misdiagnosed and is much more common than the story line suggests.

"The awareness is great [in being included in the show]," said Elizabeth Patrick, marketing and communications manager of the Lewy Body Dementia Association, based near Atlanta. "We're definitely getting the mention of the disease out there."

There are approximately 1.3 million people with Lewy body, the second most common type of progressive dementia after Alzheimer's. The association was started nine years ago by caregivers who were trying to build greater awareness about the disease and to provide support for families.

Angela Taylor, the association's director of programs who lives in State College, Centre County, lost her father to Lewy body last year at age 76. A mechanical engineer, he started to show symptoms at age 65 when he was having difficulty solving problems. It took 2 1/2 years for her father's condition to be diagnosed.

She's made it a point to watch every episode of "Boss," which she said exaggerates the symptoms but is helping to get the word out about this misunderstood disease.

"They certainly use a fair amount of creative license," Ms. Taylor said about the writers. "This is not medical education. It's entertainment.

"What you're seeing is not representative of what a family experiences with LBD. But from a public awareness standpoint, it's very important," she said. "I'm happy to see it."

Farhad Safina, creator of "Boss," doesn't see the show as a program about a disease.

The mayor "has this condition, and the most interesting aspect of it for me is that it makes it extraordinarily difficult for him to be a public person and to operate the way he does in this complicated world of allegiances and enmities that he exists in," Mr. Safina said at a press conference in Los Angeles before the debut of "Boss" in 2011.

Mr. Grammer characterized Lewy body as a storytelling tool.

"It's also really a dramatic device," he said, "that's been borrowed for the benefit of raising the stakes in this guy's life and putting a bit of a ticking time bomb in it."

Said Mr. Safina: "When you're looking at the end run, when you've got X amount of time left and you are this person, that's just really interesting. What happens to you? What do you do? That's really what it's there for. We don't treat it with any kind of sort of superfluousness. We actually do take it seriously, but the show isn't centered around the disease, per se."

Despite the national recognition about Lewy body, several caregivers on the association's message board were quick to weigh in about "errors" depicted on the show. First, it's not rare, as was stated in the first episode. And many caregivers were alarmed that Kane was prescribed the antipsychotic haloperidol or Haldol. This is a common treatment for Alzheimer's patients with disruptive behavior, but Lewy body affects patients' brains differently from other dementias and such antipsychotics can worsen symptoms, according to the association's website.

Similarities and differences

Lewy bodies, first identified by German neuropathologist Friederich Lewy in 1912, are abnormal microscopic protein deposits in the brain that disrupt its normal functioning. They cause it to slowly deteriorate.

These are often found in the brains of people who have Parkinson's and other dementias. Lewy body patients also have the plaques and tangles in the brains associated with Alzheimer's disease.

Among symptoms that differentiate Lewy body dementia from Alzheimer's are REM sleep behavioral disorders, in which people act out their dreams; unpredictable levels of cognitive ability, attention or alertness; changes in walking or movement; and visual hallucinations. Some people start out with the cognitive problems (mimicking Alzheimer's), others start with motor problems affecting gait, stiffness in arms or legs, tremors (mimicking Parkinson's). Some begin with hallucinations.

Regardless with how it starts, the patient eventually may display symptoms in all three areas: cognitive, motor and behavioral. There is no cure or definitive treatment. It has an average duration of five to seven years.

Oscar L. Lopez, a neurologist and director of the University of Pittsburgh Alzheimer Disease Research Center, is on the Lewy body association's scientific advisory board. He said Lewy body can present disturbing symptoms, particularly the complex visual hallucinations.

"It's extremely traumatic for families," he said. "What you don't want is for the patient to suffer. When you have someone with visual hallucinations for a week, that is devastating, especially for spouses."

Hallucinations can be quite vivid. "Some people, they think that the FBI is coming to arrest them. They barricade the home. They can see cars, they can see a SWAT team, but they're not there," he said.

Recognition of Lewy body as a disease is relatively new; the first clinical criteria were developed in the 1990s, Dr. Lopez said.

The baffling part is that patients can seem perfectly fine one day and have problems the next. He tells the story of being in Newcastle, England, when the clinical guidelines were written. At a dinner at the event, he sat next to an older gentleman

"We had a normal conversation. I asked him why he was there. He said, 'I'm the patient.' "

"When the person is normal, he is normal," Dr. Lopez said. "Obviously there is a pattern of decline over time."

The key, according to both Dr. Lopez and Ms. Taylor, is to get patients diagnosed as early as possible to ensure proper treatment and support for families. Diagnosis usually is done by neurologists or psychiatrists with the use of brain scans and other tools.

"Getting early treatment maximizes quality of life and makes it easier on caregivers," Ms. Taylor said. It allows for proper long-term planning, as well as addressing safety issues, such as driving.

Early diagnosis also ensures that patients are prescribed the correct medication.

Getting the word out

To help build awareness, Mr. Grammer has shot a couple of public service announcements about the disease that have appeared on Starz and the association's YouTube channel. The organization also is working with an agency to get it placed on TV and radio stations, said Ms. Patrick, the association's communications director.

It's also hosting educational conferences, patient information sessions and fundraising events such as 5Ks and awareness walks. A few years ago the Lewy body association picked a campaign color -- purple -- and designated October as its awareness month.

Part of the goal, of course, is to get families and primary care physicians to recognize symptoms earlier.

"A whole lot of puzzle pieces have to be put together to diagnose LBD," Ms. Taylor said.

There's no word yet whether Starz will renew "Boss" for a third season. It has a small but growing audience.

Still the association is grateful for the recognition the show has brought to the disease.

"Thank you for putting a face/character to Lewy body dementias," said one caregiver on the association's message board. "Speaking for a family that endured the ups and downs of this disease for almost a decade, it gives me hope to know that more families may question/investigate the care for their loved ones as a result of your production."

For more information:

Lewy Body Dementia Association:

912 Killian Hill Road, S.W., Lilburn, GA 30047

LBD Caregiver Link:

1-800-539-9767; National Office (Atlanta): 1-404-935-6444; www.lbda.org

There are several patient support groups for Lewy body dementia but none in Western Pennsylvania. The organization has a support team to help anyone who would like to get one started in his or her region.

health - tvradio

Rob Owen contributed. rowen@post-gazette.com or 412-263-2582. Virginia Linn: vlinn@post-gazette.com, 412-263-1662.


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