The late actor and comedian Robin William, who died in 2014, had a neurological condition called Lewy Body Dementia (LBD). His wife Susan Schneider Williams once called LBD “the terrorist inside my husband’s brain.”
According to the National Institute of Neurological Disorders and Stroke (NINDS), it afflicts more than one million Americans. However, it is regularly overshadowed by other common neurological disorders called Alzheimer’s and Parkinson’s, often leading to misdiagnoses in patients with LBD.
Like many other patients, Williams, who actually had LBD, was misdiagnosed with Parkinson’s. Even the CNN founder Ted Turner, who announced his LBD diagnosis in 2018, was mistakenly diagnosed with bipolar disorder.
In recent years, the awareness of this neurological disorder has increased – thanks to William’s documentary “Robin’s Wish.”
LBD is a complicated neurological disorder and it takes years to diagnose the condition.
Lewy body dementia is one of the types of progressive dementia. It is the second most common form of progressive dementia after Alzheimer’s, according to Norma Loeb, the founder of the Lewy Body Dementia Resource Center.
In this condition, there is the deposition of the protein alpha-synuclein, also called Lewy bodies, inside the neurons, damaging certain parts of the brain, resulting in cognitive decline and memory loss.
The symptoms of LBD are somewhat similar to Parkinson’s and Alzheimer’s. Other characteristic symptoms of LBD include anxiety, depression, insomnia, sleep disorders, and hallucinations. Loeb said, “Patients often develop hallucinations of people or small animals.”
According to NINDS, people with LBD may live anywhere between two to 20 years from diagnosis to death.
Given the symptom similarities of LBD, Alzheimer’s, and Parkinson’s, it becomes difficult for doctors to diagnose the condition.
Loeb said, “It can take quite some time to get the correct diagnosis and it is not unusual, unfortunately, for it to take 1 to 3 years.”
She pointed out that it is important for family members to keep track of all symptoms. In William’s case, his wife pointed out that “a sudden ad prolonged spike in fear and anxiety can be an early indication of LBD.”
Despite sharing symptoms, LBD has a few characteristic symptoms that differentiate itself from Alzheimer’s and Parkinson’s.
Loeb said, “People with LBD, unlike early Parkinson’s, will exhibit cognitive impairment, behavior issues and have fluctuations in alertness.”
Like other neurodegenerative diseases, LBD has no known cure.
Some medications used for Alzheimer’s and Parkinson’s may help with symptoms related to cognition or movement, but there are a few risks attached, which is why, Loeb explained, people with LBD are extremely sensitive to medications. She said, “Given the wrong drugs, particularly older antipsychotics, can add to or create hallucinations and can contribute to a much worsened, dangerous condition.”
