Dealing with Lewy body dementia, the second most-common form of degenerative dementia

photo Peggy Hamby cares for her father, Martin Hamby, 85, who was diagnosed with Lewy body dementia last July. He had been showing serious symptoms since 2006, but because LBD is a relatively unknown disease, doctors believed he had Alzheimer's. After his most recent diagnosis, he was prescribed new medications that dramatically improved his condition. He has since deteriorated and now is under hospice care.
photo This 2009 photo shows the late Robin Williams arriving at the Los Angeles premiere of "World's Greatest Dad," in which he starred.

FAST FACTS• LBD affects an estimated 1.4 million individuals and their families in the United States.• LBD is the second most-common form of degenerative dementia and is widely under-diagnosed. Many individuals who have LBD also are misdiagnosed, most commonly with Alzheimer's disease if they have a memory disorder or Parkinson's disease if they have movement problems.• LBD affects every aspect of a person - their mood, the way they think and the way they move.• The most common symptoms of LBD include dementia, hallucinations, cognitive fluctuations, Parkinson-like symptoms, severe sensitivity to anti-psychotic drugs and REM Sleep Behavior Disorder, in which people act out their dreams with vocalizations and body movements that include running, punching, thrusting, hitting, kicking or falling out of bed.• The symptoms of LBD are treatable. All medications prescribed for LBD are approved for a course of treatment for symptoms related to other diseases such as Alzheimer's disease and Parkinson's disease with dementia.• Early and accurate diagnosis is important because LBD patients may react to certain medications differently than Alzheimer's or Parkinson's patients. A variety of drugs, including anti-psychotics, can worsen LBD symptoms.Source: lbda.orgA new face of the diseaseAccording to his wife, Robin Williams was in the early stages of Parkinson's disease before his death earlier this year. His autopsy report confirmed that the comedian also suffered from Lewy body dementia.What is it?According to lbda.org, "Lewy body dementia is a progressive brain disorder in which ... abnormal deposits of a protein called alpha-synuclein build up in areas of the brain that regulate behavior, cognition, and movement."Symptoms can include problems with thinking, memory, moving, sleep and/or changes in behavior, to name a few of the physical, cognitive and behavioral symptoms."LBD also affects autonomic body functions such as blood pressure control, temperature regulation and bladder and bowel function. Progressively debilitating, LBD can also cause people to experience visual hallucinations or act out their dreams."TO LEARN MOREVisit the Lewy Body Association's website, www.lbda.org, for an LBD diagnostic checklist and more information about the disease.

It was in 2006 when Peggy Hamby began noticing a dramatic personality change in her father. Martin Hamby, a normally calm man, would go from anxious to depressed to wild, she recalls.

The family took him to numerous doctors and medical facilities where he was treated for everything from dementia to depression, to Alzheimer's and more. Medicine never helped and neither did the short period of time he was kept in a psychiatric ward at a local hospital. At one point, a doctor suggested shock therapy, Hamby says.

Nothing worked.

It took eight years for the family to finally get an accurate diagnosis - Lewy body dementia (LBD), a degenerative condition in which nerve cells in the brain are blocked by protein clumps that interfere with function. Often misdiagnosed as Alzheimer's, it's a disorder that recently came to national attention when it was revealed that actor/comedian Robin Williams, who committed suicide in August, had been diagnosed with LBD. He also was suffering from Parkinson's disease, his wife said.

Yet, despite its relatively unknown status, LBD is the second most-common form of degenerative dementia, according to the Lewy Body Dementia Association website. Most people die within five to seven years after initial diagnosis.

Hamby, a kindergarten teacher at Bess T. Shepherd Elementary School in Chattanooga, says Dr. Larry Keen, a geriatric psychiatrist at Neurobehavioral and Memory Services at Erlanger North in Red Bank, diagnosed her father, now 85 years old, with LBD last July.

"When I first talked to Dr. Keen and told him about Daddy's behavior changes and that he used to scream out and scratch himself up during the middle of the night, Dr. Keen immediately suspected Lewy body dementia and put him on medication and got him stabilized," Hamby says.

"We struggled for years to try to figure out what was wrong with him, but it was a relief to know it had a name."

Keen is now retired and was unavailable for comment, but Dr. Carol Lippa, professor of neurology and director of the Memory Disorders Program at Drexel University College of Medicine in Philadelphia, Pa., says there are several reasons why people, including those in the medical profession, aren't familiar with the disease.

"It has been hard to diagnose," says Lippa, a member of the Lewy Body Dementia Association Scientific Advisory Board. "The clinical features are different, unusual, and we haven't had the diagnostic ability to be sure of all the symptoms."

And, like it was with Hamby's father, sometimes LBD is confused with Alzheimer's, she says. While there are some similarities, the two are different, Lippa says.

"Where Alzheimer's causes forgetfulness, Lewy body causes problems with emotions, attention, complex thinking."

Those are the very symptoms Martin Hamby exhibited over the last eight years, his daughter says.

"We first noticed the depression, then he became anxious, would physically shake and act wild," Hamby says of her father, a retired home builder. "He'd moved everything around in the house. He took all the pictures off the wall, took the air-conditioner vents out of the floor, moved furniture everywhere, pulled the TV over, all kinds of things."

According to the Lewy Body Disease Association website, every person with LBD will manifest different degrees of the symptoms. Some will show no signs of certain features, especially in the early stages of the disease. Symptoms may fluctuate moment-to-moment, hour-to-hour or day-to-day.

The Mini-Mental State Examination (MMSE), which is often used to screen for signs of Alzheimer's, cannot be relied upon to distinguish LBD from other syndromes. Some patients meet the criteria for LBD, yet score in the normal range of cognitive assessment tools such as the MMSE.

In 2007, just after her father started to exhibit symptoms of LBD, Hamby's mom, Iona Hamby, who died in 2009, was diagnosed with amyotrophic lateral sclerosis (ALS). She died in 2009.

"During the time when we were caring for my mom, Dad wasn't doing well at all," Hamby says. "He was depressed. He wanted attention and was upset that Mother was getting a lot. It was so frustrating to my brother and me because he wanted us to stop taking care of Mother to take care of him.

"He would say things to me like, 'If you'd ever come over here, we could get something done.' But I was there whenever I wasn't at work. He didn't realize I had been there. It was like he forgot. The Daddy I knew would never have said that."

Research for LBD is ongoing, Lippa says, but there is no medication, to date, that can cure the disease. It can be treated, though.

"We don't have meds yet that will reverse the biology or slow the disease down, but we have a lot of medicine for the patients that will help with the hallucinations and psychosis, as well as medicine for the cognitive symptoms and movement problems," Lippa says.

Hamby says the medication Keen prescribed was phenomenal, changing her father's behavior almost immediately.

"He got so much better and had been doing well. He was calm, more like the Daddy I used to know," she says.

About a month ago, however, his physical health began declining and, though he can no longer walk, he is mentally alert.

"He can still talk. He knows who we are, and he told me the other day how much he loves me and how much we've done for him," she says.

"I can't help but wish we had seen Dr. Keen eight years ago," she says. "I feel certain that, if (her father) had been given the right medication in the beginning, maybe he would have done better for longer."

Through the attention surrounding the death of Robin Williams, Lippa hopes more people become educated about LBD.

"I think it might improve our visibility and awareness," Lippa says. "Sometimes it takes a famous celebrity to get on the radar screen - like Ronald Reagan and Alzheimer's and Michael J. Fox and Parkinson's - but's it's wonderful for visibility."

Until recently, the disease was thought to mostly affect the very elderly and mostly males, Lippa says, but that's no longer the case because it has been found in females and in those in their mid-6os. It has not been found in children.

One of the keys to treatment, however, is for more physicians to understand what LBD is - and isn't, notes lbda.org.

"An increasing number of general practitioners, neurologists, and other medical professionals are beginning to learn to recognize and differentiate the symptoms of LBD from other diseases," the website says. "However, more education on the diagnosis and treatment of LBD is essential."

Contact Karen Nazor Hill at khill@timesfreepress.com or 423-757-6396.

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