Kathy Fowler knew something was wrong after her husband, Philip, had quadruple heart bypass surgery in 2003.
He was different, not himself.
"I noticed that he would become confused," Fowler said. "I remember talking to him on the phone one day shortly after he left work to come home. He said, ‘I can't get out of the parking lot.' But when asked about (the episode) later, he had a good story to cover up.
"As time went on, his behaviors were so bad that I thought, ‘I don't know this person. This is not the gentle, kind man I have known.' We'd been married 37 years at that time, but I didn't know him," Fowler said.
"Once, following one of his dreams which he frequently acts out with jerks and jabs, he almost knocked me out of bed by a whop to the head," Fowler continued. "Another time he was upset with me and stared at me with the eyes of a stranger; he frightened me. The person I saw was not Philip. I had to find help. We went to doctors, to doctors, and to more doctors," Fowler recalled. "There was no help there. And that's what a lot of people experience. The stress on me, personally, put me in the hospital twice before Philip was accurately diagnosed."
Doctors finally determined that he had Lewy body dementia, an incurable, progressive disease that causes motor, cognitive, sleep and behavioral symptoms.
"My friends thought it was a rare disease," said Fowler in a recent interview. "LBD is not a rare disease. Nearly 1.3 million people in the United States alone suffer from it, and it is the second most common cause of degenerative dementia in the elderly after Alzheimer’s disease, and if not correctly diagnosed, various medications prescribed for its symptoms can be very bad, even fatal."
Lewy bodies are microscopic protein accumulations first reported in 1912 by Dr. Friederich Lewy, who identified them in autopsies in the brainstems of people with Parkinson’s disease. In 1817, Dr. James Parkinson had discovered a "shaking palsy" that "spared the intellect" which we know as Parkinson’s disease.
Many individuals with Parkinson’s also developed cognitive impairment that progresses to dementia. In 1961, the protein deposits (now called Lewy bodies) were also linked to progressive dementia that did not start with Parkinson’s disease, and by 1990, researchers across the world were using different names to describe a single disease that had motor, cognitive, and psychiatric symptoms. In 1996, an international consortium established a single set of diagnostic criteria for the disease now known as "dementia with Lewy bodies."
The Fowlers got their diagnosis in 2007, from Dr. Karuna Shah, a local neurologist, who ordered a PET scan and psychoneurological tests.
That was four years after their ordeal began. By that time, friends and relatives had noticed his tremors and falls, symptoms that are ‘parkinsonisms’ but not Parkinson’s disease.
Early diagnosis is key to successful management of Lewy body dementia. Early diagnosis provides physicians an opportunity to minimize exposure to medications that may aggravate symptoms, such as traditional medications used to treat hallucinations.
Patients with Lewy body usually have other medical conditions for which they are being treated. Because Lewy body is a complex disorder affecting cognition, mood, sleep, movement and behavior, its symptoms are best addressed by a team of collaborating physicians.
Kathy Fowler has stepped up to the challenge of educating physicians and other healthcare professionals about Lewy body dementia, and to giving hope to other caregivers like herself by starting a chapter of the Lewy Body Dementia Association in Newton County. Fowler has delivered dozens of information packets to doctors and to others who might be able to get the word out.
Life has changed for the Fowlers since the diagnosis.
"My behavior has changed, and I have changed more than Philip has," she said. "We’ve had to change our plans for the future which includes thinking about powers of attorney and other legal matters. But there is great relief in knowing what the problem is, and we have excellent support.
"Lewy body does not affect one’s innate personality," Fowler said. "It has not affected his intelligence or even his dry sense of humor. But Philip is happier when he is doing things he is familiar with and enjoys. If he can be outside he is happier. In fact, our son Brad has taken his father on a weekend hunting trip with friends."
