Originally posted Tuesday, December 18, 2018 by RODNEY HO/rho@ajc.com on his AJC Radio & TV Talk blog
When CNN founder Ted Turner made the bombshell announcement on "CBS Sunday Morning" in September that he had Lewy body dementia, the general reaction was: "What's Lewy body dementia?"
Unlike the most common type of dementia, Alzheimer’s, LBD (as it's commonly called) is not particularly well known and is often misdiagnosed by doctors in part because there is no simple test for it.
"It can look like other disorders," said Angela Taylor, director of programs for Lilburn-based Lewy Body Dementia Association. "It can look like Alzheimer's in its early stages or other psychiatric disorders. It's tough to tease out if not all symptoms are present or if the doctor is not familiar enough."
She said many symptoms resemble Parkinson’s and often features persistent and recurring hallucinations.
Robert Bowles, a 71-year-old retired pharmacist from Thomaston, said at first, it seemed like he had Parkinson's. "I'd stand up, take a few steps, pass out, sometimes lose consciousness," he said. But when docs gave him anti-psychotic drugs, he turned him catatonic.
It took 18 months and a battery of tests and doctors to come to the conclusion he had LBD. His mindset quickly went dark. “I thought I was issued a death sentence,” Bowles said. “I struggled for almost a year feeling hopeless. I didn’t see a path forward. I had to decide whether I wanted to live or die.”
At 1 a.m. one morning, he asked God for guidance because he felt like he was unduly making his family suffer. “God spoke to me,” Bowles said. “He said, ‘I’m not through with you. Just as you loved, cared, educated and encouraged patients at the pharmacy, you now have a mission.’”
So Bowles began speaking out about the disease at public forums and conferences. He did 20 last year. William Hu, his doctor and an Emory neurologist who studies dementia, calls Bowles a "one-man crusader to get the word out."
Taylor said there needs to be more Bowles out there because there is a broad lack of awareness of LBD despite the fact it impacts at least 1.4 million Americans, based on her group’s estimates. It’s the second most common type of dementia behind Alzheimer’s, which impacts an estimated 5.7 million people.
On Nexis/Lexis, which tracks a broad range of news sources, the phrase “Lewy body dementia” was mentioned 1,758 times in news stories in 2018. In a mere ten-day span from December 22 to January 2, 2019, in comparison, “Alzheimer’s disease” was referenced 1,705 times.
There are more than 200 non-profit groups that include "Alzheimer's" in their name on Charity Navigator. There are just two for Lewy body including the Lilburn group, which raised $1.6 million in funds in 2017, according to its 990 filing with the federal government. In comparison, the Alzheimer's Association brought in more than $326 million in 2016, according to its most recent 990.
LBD did get a boost of publicity after comic and actor Robin Williams, who had an especially aggressive version of the disease, took his own life in 2014 at age 63. Casey Kasem, the radio DJ known for hosting American Top 40, died of the disease the same year at age 82. And former Georgia governor Zell Miller, who passed last year at age 86, also suffered from Lewy body.
Turner, in the CBS interview, downplayed his diagnosis of Lewy body dementia in a way that infuriated those familiar with the disease.
"It's a mild case of what people have as Alzheimer's," Turner told Ted Koppel. "It's similar to that. But not nearly as bad. Alzheimer's is fatal."
Hu, a 42-year-old neurologist at the Emory Clinic who has researched dementia the past decade, said Turner’s interpretation is not uncommon. “I think everybody has such a fear of Alzheimer’s disease now that when they hear its not Alzheimer’s disease, they feel a sense of relief,” he said.
Unfortunately, Lewy body disease is just as fatal as Alzheimer’s and some of its most common symptoms are even worse, especially the potential psychotic episodes.
Meg Girouard, a school teacher in Sagamore Beach, Mass. said her father Anthony Arena began having hallucinations a few years ago. He'd see people and animals that weren't there. "He woke us up at 5 a.m. and insisted the house was on fire," she said. "He felt like those things were real."
Then he got paranoid, followed by bouts of aggression. One time, he insisted on driving a boat, ran over a mooring ball and messed up the propeller. “He got mad at me and basically beat me up,” she said. “That was the last straw. We had to put him in a memory care facility.”
But Girouard said it’s worth it. Arena gets social interaction, a nutritional diet and medical supervision. He has structure and is no longer aggressive.
“If we brought him back home, he probably wouldn’t last very long,” Girouard said. “He’d run off. He was running away from us. We’d call the police and he wouldn’t get in the car.”
Finding ways to alleviate or reverse any type of dementia has been elusive to date. The last time the FDA approved a drug to treat Alzheimer’s was 2003. LBD faces its own special challenges, Hu said.
Hu compares a Lewy body diagnosis to the story about five blind monks feeling an elephant. Each specialist sees a different part of the disease, making it difficult to see the big picture. “You rarely find two people with exactly the same set of symptoms,” Hu said.
While Alzheimer’s typically attacks cognitive function first, he said Lewy body isn’t consistent. It may start with vision issues or hallucinations. It’s not atypical for a patient of his to see multiple specialists before coming to him.
Sidny Hieronymus, 70, of Sandy Springs, said her husband Jim - a kind, gentle man who worked in insurance - first began exhibiting a common early symptom around 2010: he'd begin "acting out" his dreams for real, flailing his arms and hitting her.
By 2014, he was told he had vertigo. Soon, he was taking extensive naps and had difficulty accomplishing basic tasks. Doctors said him he probably had Alzheimer’s. But after some research, Sidny wasn’t so sure. She thought it was Lewy body.
When the Integrated Memory Care Clinic at Emory University did tests on Jim in late 2016, they agreed: Sidny was right.
Over time, he no longer wanted to leave the house. With his neurological issues, his movements became jerky. He fell a lot.
“He was frustrated but calmly frustrated,” she said. “He was also depressed. He would just sit and watch the news.”
In early 2017, he started having hallucinations. Soon, he couldn’t read. And later in the year, he could no longer speak clearly. Sidny loved her husband and took care of him as long as she could until he needed round-the-clock care.
By the fall, Sidney reluctantly placed her husband in a memory care facility, where he spent his final nine months. “That broke my heart,” she said. “I visited him everyday but it was like a kick in the gut. He’d be in his wheelchair and when he saw me, he’d try to stand up and walk to me with a big smile.”
During visits, she’d sit him by the window and play him jazz music by the likes of John Coltrane off Pandora. (He was a drummer back in the day.)
“I was striving for him to be at ease,” she said.
For better or worse, he was well aware of what was going on until the end, something that is not necessarily the case with Alzheimer’s.
“It’s a terribly cruel disease,” Sidny said, “because there is that awareness.”
Jim passed away last July at age 74. They had been married 38 years.
Hu said there are only a handul of medicines to help folks with LBD His patient Bowles takes just two. “We are focusing on improving general brain health whatever the cause of the disease. It’s about exercise. It’s about reducing stress. It’s about having a purpose in life. It’s about social and cognitive interactions. These in clinical trials have proven to improve brain health.”
Bowles, now six years since diagnosis, can still walk okay and speak at functions about the disease without too many complications. He eats out three or four times a week, shops at Walmart and goes to church.
But new symptoms pop up every so often. He is now super sensitive to loud noises and wears earplugs. Sometimes, when his brain tells his legs to move forward, they go back or to the left.
He is planning to cut back on his speech schedule this year. It takes a lot out of him now. “Brain gets tired,” he said.
“Body, too,” his 68-year-old wife Judy added.
Judy is his rock, but they are aware there may be a day she won’t be able to take care of him “We have visited 10 assisted living homes just to be prepared,” he said.
As awareness of LBD grows, there is more money going into dementia research, said Rob Reisenberg, who founded the Atlanta Medical Research Center in 1982. Pharmaceutical companies hire his company to hold clinical trials on different issues such as depression, anxiety, schizophrenia and ADHD. He has eight trials related to dementia going on right now, two connected with Lewy body disease.
He said getting volunteers for Lewy body trials have been challenging. “A volunteer has to be a giving person,” he said. “They might receive a placebo and not even receive the drug.”
Reisenberg said dementia research is still in its relative infancy.
Nobody has even come up with a test to identify Lewy body, much less a cure for it. They’ve tried nasal and gut biopses to no avail, Hu said.
But Hu is confident within 10 years, “we will be able to have an objective way to diagnose people with different types of neurological disease.”
And Bowles has one simple mission to try to change people’s perceptions of dementia. “People tend to think about late-stage dementia,” he said. “They imagine once they’re diagnosed, it’s over. It’s not. It will take people like me living with dementia who will change the culture of dementia.”
