Healthy Living

What It's Like To Love Somebody With Lewy Body Dementia

Inside the disease that contributed to Robin Williams' death.
Pat and John Snyder at their son's wedding at Duke Gardens in Durham, North Carolina, in April 2004.
Pat and John Snyder at their son's wedding at Duke Gardens in Durham, North Carolina, in April 2004.

Pat Snyder tried 12 doctors over seven years before she found one who could properly treat her husband, John.

John Snyder began experiencing lapses in memory, a change in personality and muscle rigidity in 2000, when he was 61; he'd been suffering from severely disrupted sleep since his 40s. After diagnostic twists and turns that included suggestions like thyroid issues, low testosterone, depression and blood pressure problems, his 11th doctor finally diagnosed him in 2007 with Lewy body dementia, a progressive brain disease that's commonly mistaken for Alzheimer’s and Parkinson’s disease.

But then the doctor refused to treat John, saying that he was afraid to make a mistake.

"Some doctors don’t treat it because they don’t know how to treat it," Pat Snyder told HuffPost from her porch in Forest City, North Carolina. "That’s part of the dilemma -- it’s a very common disease, but it can be very unknown."

Doctors describe Lewy body dementia as “the most common disease you’ve never heard of,” citing symptoms like visual hallucinations, sleep disorder, muscle rigidity and dementia that are easily mistaken for other conditions. The National Institutes of Health estimates that more than one million people in the U.S. have LBD; the Lewy Body Dementia Association pegs it at 1.4 million. Like Alzheimer’s and Parkinson’s, there is no cure -- only treatment -- for LBD.

Beloved actor Robin Williams had the disease, though that was only confirmed after his death. Williams' widow, Susan, described the LBD as a “nightmare” that eventually took her husband's life in a recent interview with ABC. Like John Snyder, Williams reportedly experienced a year of baffling and seemingly unconnected symptoms before his doctors tentatively arrived at a diagnosis for Parkinson’s Disease.

"Her story is our story," Snyder said. "You’re playing whack-a-mole, getting symptoms you don’t understand [and] you’re going to doctors who don’t understand, don’t diagnose it. I am thrilled that she has been willing to step out and tell the story and make America more aware of this, because it’s very common."

“You’re playing whack-a-mole, getting symptoms you don’t understand [and] you’re going to doctors who don’t understand.”

- Pat Snyder

Thankfully, John's 12th doctor, Daniel Kaufer of the University of North Carolina School of Medicine, knew exactly how to approach his care. Because of the treatment regimen Kaufer recommended, the Snyders were able to extend the milder "early" stage of LBD for five years before John's mind and body began giving way to the more severe aspects of the disease.

Kaufer was different from the other doctors, Snyder said, because he gave the couple hope that certain LBD symptoms could be treated, with the goal of preserving as much of John’s “personhood” as possible for as long as possible. John died five days ago on Nov. 5, eight years after his diagnosis. It was precious time he was able to spend with his wife, their two children and four grandsons.

Strange and confusing symptoms

John’s symptoms began in 2000, soon after surgery to remove his thyroid. Because he'd just had an operation, his doctors chalked some symptoms up to hormone imbalances related to the gland’s removal. But in retrospect, said Snyder, the symptoms of LBD started long before his surgery -- about 20 years before. Like many people with LBD, John developed REM sleep behavior disorder, a condition in which sleep becomes violent and disruptive. His sleeping body began acting out the fantastical dreams he was having -- like being a pirate in a sword fight on a ship, or a fleeing soldier in a world war -- and the sleep-movements would knock him out of bed. Other times he would laugh in his sleep.

Pat and John Snyder at his birthday party in March 2013.
Pat and John Snyder at his birthday party in March 2013.

As the disease progressed, John's body stiffened up, and he began walking with a shuffle. The highly intelligent, inquisitive trial lawyer started off his days "sharp as a tack" and would end them lost in a foggy confusion, Snyder said. He started to withdraw from family gatherings, sitting alone in a chair when previously he would have been right in the middle of the party. The scariest moment for Snyder came when John called police to deal with a bear on their property. It turned out to be a tree stump.

"That’s when I had a meltdown," Snyder recalled. "I was like, 'Oh my goodness, you’re working with these police and telling them you saw a bear, and there’s no bear!'"

This confusing set of symptoms is typical of LBD, explained Dr. Joe Quinn of the Parkinson’s Disease and Movement Disorders program at Oregon Health and Science University. It’s why doctors and even some brain experts struggle to initially diagnose the disease, named for abnormal packets of protein called Lewy bodies that appear in the brain.

There is no cure, but there is treatment

Because there’s no blood analysis or brain scan to test for the condition, physical confirmation comes only in death, when doctors performing an autopsy analyze slivers of brain under a microscope. In this way, too, LBD is very similar to Alzheimer’s disease, which is confirmed in autopsy by finding plaques and tangles in the brain, and to Parkinson’s disease, which is confirmed in autopsy by Lewy bodies in the areas of the brain that affect movement.

While a patient lives, however, clinicians are left to sort through a mess of symptoms that might seem like Parkinson’s (muscle rigidity, which Quinn called “Parkinson-ism") or Alzheimer’s disease (dementia).

“If you have the combination of Parkinson-ism and visual hallucinations, and the person is having trouble thinking clearly, that’s an instance where you make a diagnosis of Lewy body dementia with great confidence.”

- Dr. Joe Quinn

Quinn sometimes explains LBD symptoms to others as a blend of both diseases: Patients will struggle to move, and may also suffer mentally. He himself has initially diagnosed patients with Alzheimer’s, only to revise that diagnosis to Lewy body dementia a year later when more symptoms come to light. One major tell for LBD is visual hallucinations that aren’t caused by medication or pre-existing mental illness.

"If you have the combination of Parkinson-ism and visual hallucinations, and the person is having trouble thinking clearly, that’s an instance where you make a diagnosis of Lewy body dementia with great confidence,” he said.

But for people like John, whose visual hallucinations didn’t come until much later on in life, that Lewy body diagnosis can be a long time coming.

Often, as Snyder discovered, educating doctors about LBD fell to her as the caregiver. For instance, she had to monitor medications because many doctors didn't realize that common antipsychotics prescribed for the hallucinations are actually very dangerous for people with LBD.

"It’s just a very complex disease to treat, and there are very medical people who just don’t have an understanding," she said. "And that causes huge stress for caregivers."

As John’s disease progressed, Snyder slowly transformed into a de facto expert on the disease. She did her own research on the brain and figured out how to unlock parts of John’s mind that were slipping away to dementia.

When he started to lose his ability to speak, she learned that parts of the brain that control singing can escape the brain damage from certain diseases. She had some success drawing John’s words out of him by singing the “Happy Birthday” song, she said. And she worked hard to keep positive and proactive about John’s care, which she credits for the five years he managed to remain suspended in the earliest stages of LBD.

Brain scans could one day provide a more accurate diagnosis

Hope for a better diagnosis process may be on the horizon, said Quinn. Scientists have made progress with PET scans to identify plaques in the brain of a living patient who has Alzheimer’s disease, and Quinn hopes that parallel efforts to create brain scans for Lewy bodies can one day help neurologists diagnose LBD early and with certainty.

Until that day, Snyder hopes that going public with her family's experience -- and the Williams family speaking of theirs -- can raise awareness and put the condition front and center for doctors who may encounter this set of puzzling symptoms in a future patient.

In 2012, she self-published a book about her experience, and for a year has moderated an online support group for spousal caregivers of LBD. Indeed, when HuffPost reached Snyder by phone for this story, John had died only the night before, but she insisted on maintaining the interview to get the word out about LBD.

For now, though, she’s taking a moment to savor the 41 years of marriage she enjoyed with John, and is surrounded by family in their home. Because she managed to stay so close to her husband throughout the progression of his disease, she was able glimpse moments of his "personhood," as she called it -- jokes, smiles and a “twinkle in his eyes” -- to the very end.

"He told me two days ago that he loved me so very much, and he said it so clearly with so much expression," she said. "And just so you know, he was one sweet guy, and that showed to the very end."

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