TYLER, Texas (KLTV) -Lewy Body Dementia: The Disease You’ve Never Heard Of
It’s the second most common type of dementia, after Alzheimer’s, yet many remain unfamiliar with its challenges.
“The most common disease that people have never heard of.”
That’s how 73-year-old Don Kent of Tyler describes Lewy Body Dementia. Kent, who spends many days at the Alzheimer’s Alliance of Smith County sharing his story, was diagnosed in 2017.
“I went to neurologists in Dallas, Tyler, New Orleans, was told nothing was wrong with me,” he recalls.
His diagnosis finally came after a visit to the Mayo Clinic in Minnesota. “I had never heard of it,” he says.
What is Lewy Body Dementia?
LBD is characterized by the buildup of abnormal protein deposits, called Lewy bodies, in the brain. These deposits disrupt normal brain function, leading to a range of challenging symptoms:
Cognitive Issues: Problems with problem-solving, planning, and potentially memory. Motor Symptoms: Muscle stiffness, similar to Parkinson’s disease.Psychiatric Symptoms: Depression and, most distinctly, vivid hallucinations.Sleep Disturbances: Patients often act out their dreams, leading to restless nights. “People start moving, kicking, punching, they’re acting out their dreams,” explains Dr. Kushboo Verma, a neurologist with UT Health East Texas.The Challenge of Misdiagnosis
Dr. Verma highlights that LBD is often misdiagnosed due to its symptoms overlapping with other conditions. “Well, I don’t know which kitchen item goes in which kitchen cabinet, some issues like that, and then eventually as the protein spreads in the brain it can affect memory,” she notes, illustrating the subtle cognitive changes that can be attributed to other causes initially.
While drugs can help manage symptoms, there is currently no cure for Lewy Body Dementia.
Don’s Purpose: Advocacy and Hope
Despite the challenges, Kent has found a profound purpose in sharing his experience. He travels locally and nationally, speaking at conferences and continuing to hike, all while advocating for greater awareness.
“My purpose is to tell people about Lewy Body Dementia… to help people living with it, and I believe I’m serving my Lord and Savior while doing it,” he shares, embodying resilience and hope.
It’s estimated that around a million Americans live with Lewy Body Dementia.
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