Robin Williams’ suicide shocked the world, as few people knew about his private battle with disease. Sadly, no one would correctly diagnose his Lewy Body Dementia (LBD) until it was too late. While nearly 1.5 million Americans suffer from LBD, it’s a widely underdiagnosed condition that few people know about.
The Road to Diagnosis
In an article written by the late actor’s widow, Susan Schneider Williams, she explained that Robin’s condition started with a series of seemingly unrelated symptoms: heartburn, insomnia, constipation, and intermittent hand tremors. These symptoms increased in frequency and severity over time, adding memory problems, paranoia, and delusions. In the coming months, he would endure test after test, only to receive negative test results that showed nothing concrete. He was ultimately diagnosed with Parkinson’s disease. It was only months after his death that the coroner was able to determine LBD was the cause behind so many of the symptoms he’d encountered.
Unfortunately, Robin’s tale isn’t a unique tragedy – it’s how most cases of LBD play out. That’s because the symptoms of LBD are so varied that they’re easily mistaken for something else. These scattered symptoms are commonly mistaken for other diseases, causing treatment to be delayed for months. Only after a long string of negative test results and treatments will a lucky few finally learn what has caused their illness.
While there’s no cure for LBD, early diagnosis is important to maximizing your quality of life. This is partially because so many people with LBD have poor reactions to the medications commonly used to treat symptoms of dementia. But more importantly, appropriate treatment may help many people with LBD see improvements in symptoms, or even slow the progression of their disease.
Lewy Body Dementia Explained: What is Lewy Body Dementia?
Lewy bodies are a protein that belong in the brain stem, but become diffused to other areas of the brain in LBD. As the brain’s chemistry reacts to these abnormal proteins, changes occur in thinking, perception, and behavior. The full range of over 40 symptoms that this can cause is widely varied, ranging from cognitive issues like forgetfulness and disorganized conversation, to physical symptoms like tremors or a shuffling walk.
Technically speaking, LBD is actually an umbrella term that includes both Parkinson’s and Lewy body disease. While the earliest symptoms of these diseases differ slightly, both will lead patients down a very similar road. Diagnosis is usually made on the basis of which symptoms appear first. Doctors generally look for the symptoms of dementia in addition to other supportive features, like spontaneous features of Parkinson’s, REM sleep disorders, and recurrent visual hallucinations.
A Hopeful Future
While it’s currently difficult to obtain Lewy body dementia diagnosis, researchers are hard at work to develop new methods to distinguish LBD from other forms of dementia. Recent research at Ohio State University has already uncovered significant correlations in patient data, which may help develop better diagnostic criteria for future physicians. Although there’s no cure in sight, early diagnosis is one concrete step we can take to improve the lives of those who suffer from LBD now and in the future. And with it, tragedies like those that befell Robin and Susan Williams might just be prevented in the future.
Do you have a loved one who suffers from LBD? How was it finally diagnosed? How long before you received a diagnosis? How are you and your family helping your loved one cope with the disease? We’d greatly appreciate you sharing your story with others in the comments below.