Robin Williams graced our screens in movies that we loved, including Dead Poet’s Society, Jack, Aladdin, and many more. The man that brought us many laughs and heartfelt moments left a void in the world when he committed suicide in 2014.
But, what seemed like a confusing way to die was just the tip of the iceberg. In this article, we’ll demystify Robin William’s death and his battle with Lewy Body Dementia. We seek to do what the documentary, Robin’s Wish, aims to do. That is to enlighten what went on in the screen legend’s struggle with Lewy Body Dementia—a neurogenerative disease.
Understanding Lewy Body Dementia (LBD)
While you might not have heard the name very often, it’s one of the most common forms of dementia out there. LBD happens because the normal brain protein, alpha-Synuclein, misfolds and forms toxic deposits in the brain.
A misfolded protein (aka prion), Synuclein, can also move from cell to cell within the brain, producing widespread toxic deposits. These harmful deposits cause damage to the brain, resulting in symptoms such as memory loss, inability to reason, and inability to control voluntary movements, etc.
These abnormal Synuclein deposits in the brain are known as Lewy Bodies, and they cause cells in the brain to act abnormally. As a result, the person dealing with Lewy bodies will have a multitude of issues, including:
- Reduced ability to remember things
- Increased difficulty completing daily tasks
- Inability to focus
- Language challenges
As Lewy body disease progresses, the intensity of the above symptoms escalates.
Two Type of Lewy Body Disease
There are two categories of Lewy Body disease:
- Parkinson’s – PD is the disease that took hold of the late boxer Muhammed Ali.
- Lewy body dementia – LBD afflicted the comic legend Robin Williams.
Let’s take a closer look at PD and LBD below:
Parkinson’s Disease (PD)
Someone with Parkinson’s disease has issues controlling their muscle movements and rigidness. How many people are affected by PD? There are more than 1 million people with PD in the US and 10 million worldwide. Learn more about Parkinson’s Disease here.
Lewy Body Dementia (LBD)
LBD is a form of Lewy body disease that affects both movement and thinking/cognitive disabilities. These overlapping symptoms between Parkinson’s and Alzheimer’s are what we refer to as ParkinZheimer – our new paradigm in looking at neurological diseases in general.
How prevalent is LBD?
There are more than 600,000 people in the US with Lewy Body Dementia.
How does Lewy body damage the brain?
As time goes on, Lewy bodies spread to all areas of the person’s brain until no place is left untouched, as in Robin Williams’ case.
What causes Lewy Body Disease?
As discussed above, misfolded Synuclein’s buildup produces an overabundance of Lewy Bodies, causing the disease to unleash its deadly plight.
What are the critical risk factors of Lewy Body Dementia?
Here are some known risk factors for LBD:
- Gender – Studies show that males are more likely to develop Lewy Bodies than females.
- Age – Aging is another significant risk factor of LBD. People 60+ have an increased risk. Robin Williams was only 63 years old when he passed.
- Family history – Genetics may represent the third key risk factor for LBD.
“If a person has a history of dementia-related diseases in their families, the likelihood that they will suffer from diseases that are similar increases dramatically.”
How Is LBD Diagnosed?
While it would be easy to say that a single test can diagnose Lewy Body Dementia, traditional diagnostic tests have not been up to this task.
One reason is that many of the LBD symptoms can also suggest other types of brain diseases, making it challenging for even the most experienced healthcare professionals to pinpoint what’s going on, particularly in the pre-symptomatic stage.
Research has proven that neurological diseases, including Alzheimer’s, LBD, and Parkinson’s, occupy a long asymptotic stage, sometimes over multiple decades.
Thanks to molecular science innovation, biotech companies like Amprion have made stunning advancements in diagnostic tests.
In May 2019, the FDA awarded Amprion Breakthrough Device Designation for detecting misfolded alpha-Synuclein. The company expects a market rollout of biomarker testing for Lewy Body Dementia in May 2021. And we’re thrilled to finally offer such a precise test to people at risk of LBD for early preventive care.
The most significant advantage for Amprion’s biomarker-based diagnosis is that we now enable doctors to help patients by detecting Lewy Body Disease in the early stages (or pre-symptomatic stages). This accurate diagnosis allows early prevention and treatments to slow the progression.
Just as importantly, it helps drug companies innovate new treatments targeting the misfolded Synuclein biomarker, slowing down LBD as early as possible.
Proper diagnosis is crucial since misdiagnosis may lead to mistreatment, which in turn may cause the disease to worsen.
“Did you know that misdiagnosis of neurogenerative diseases is estimated between 20% to 50%? Read the full article here.”
How does Amprion’s biomarker test work?
Amprion’s groundbreaking Prion Detection Science detects the prion-protein Synuclein in the brain at the earliest stages. The biomarker, alpha-Synuclein, drives the overproduction of Lewy Bodies. Learn more about the six steps of our test.
Why test for LBD when there is no cure yet?
One may ask why anyone would want to take the test for LBD when there is no cure yet for LBD? Well, this question is a significant one to address. Consider the following:
While cures for LBD are still under development, there are effective treatments available that may lessen the symptoms at the early stages of the disease.
Early prevention can delay the onset of symptoms
Combining proper medication and early preventive care such as lifestyle/diet changes, people at risk or showing early signs of LBD are better positioned to delay the early onset of symptoms. Because most diseases are more treatable at the early stage. So early diagnosis and prevention play an essential and positive role here.
In addition, an LBD test in the early stages offers a clear and precise diagnosis, eliminating the frustration and worry about an uncertain diagnosis. Or worse, a misdiagnosis from the get-go can lead to prescribing the wrong medications. Neurologists and other physicians can now order this biomarker test and provide patients with a more confident diagnosis sooner rather than later.
Another crucial benefit of Amprion’s biomarker testing is to improve and speed up research and development for new generations of effective drugs.
Molecular test results give our scientists a clearer understanding of how misfolded Synuclein works in driving LBD’s progression and how to manage and care for the patient. The resulting data put research on a fast-track to develop, test, and produce treatments targeted at these biomarkers. Understanding how LBD works on a molecular level is the holy grail to find a cure for Lewy Body Dementia.
The closer we get to the cure for LBD, the less likely it is that others will have to endure traumatic situations like Robin Williams. The sad truth is—our beloved entertainment icon suffered from LBD, which unfortunately went undiagnosed until after his death.
How Is Lewy Body Dementia Treated?
Patients with LBD often present with a mix of symptoms suggesting a combination of Alzheimer’s and Parkinson’s. The Parkinson’s-like motor symptoms in LBD often respond to Parkinson’s medications, and the Alzheimer’s-like cognitive symptoms may benefit from certain Alzheimer’s drugs.
However, for these medications to work correctly, it is critically important to have an accurate LBD diagnosis since some common Alzheimer’s drugs may worsen the patient’s symptoms.
Physical therapy can help LBD patients with Parkinson’s-like symptoms by stretching out their limbs and minimizing stiffness. As tasks become increasingly challenging to perform, it’s essential to help patients find ways to perform daily chores.
With occupational therapy, a person can maintain as much independence as possible even while the disease progresses.
Mental health therapy
Mental health therapy helps alleviate and process the negative emotions or feelings brought on by the debilitating disease.
Preventive care such as diet
Recent studies suggest that a diet rich in Vitamin C and Vitamin E may help reduce Parkinson’s- likes symptoms and slow the disease’s progression.
This change in diet may also benefit cognitive symptoms in LBD since both are caused by the accumulation of misfolded Synuclein and Lewy Bodies in the brain.
While all of the above therapies might help improve a person’s quality of life, there is currently no definitive cure for Lewy Body Dementia and other progressive neurodegenerative diseases like Alzheimer’s and Parkinson’s.
Symptoms of Lewy Body’s Dementia
Knowing the symptoms that you or your loved ones might be experiencing can help you better explain to physicians what’s going on. These symptoms can also help develop a treatment plan to slow the disease’s progression.
Cognitive Decline and Memory Loss
The memory loss and cognitive decline in LBD patients may be similar to those observed in Alzheimer’s patients. As the memory losses progress, these symptoms can cause someone to become entirely dependent on others and change them into a person that loved ones barely recognize.
Parkinson’s and LBD patients frequently develop tremors. There are specific areas of the body that patients might experience these tremors more frequently.
When tremors begin in the foot, it’s usually when a person is resting, and in severe cases, the entire leg might appear to be shaking violently.
When the tremors are in the hands, they begin at the person’s fingertips. When the tremors are identified in someone’s jaw, it may give the appearance or make the sound as if a person’s teeth are chattering uncontrollably.
In some cases, people might find that chewing gum or food reduces the tremors in the jaw.
Seeing things that aren’t there is known as visual hallucinations. If a person hears things that aren’t there, it’s known as auditory hallucinations.
When someone is suffering from either of these hallucinations, it can cause them to become increasingly paranoid that someone or something means to do them harm. Hearing things and seeing things that aren’t there can cause a host of other problems.
If you’re suffering from hallucinations, you might begin to have trouble sleeping at night because one place where it’s challenging to escape these problems is when you’re asleep.
One factor that might suggest someone is suffering from Lewy Body Dementia or Parkinson’s is the prevalence of nightmares accompanied by movements that act out the nightmares.
This type of sleep disorder can occur before receiving a diagnosis and may worsen as their disease progresses. Someone with LBD and PD might begin to talk in their sleep or move about violently during their nightmares.
These patients tend to spend more time in REM sleep, which is the phase of sleep characterized by rapid eye movements. People who spend too much time in REM sleep often wake up in the morning less rested than they intended to be.
As people age, they cannot move as quickly or as fluidly as they once could. As Lewy Body diseases progress, movements can become even slower.
This slowness is a direct reaction to the stiffness that patients experience in their muscles. This stiffness can cause a host of issues, including problems with posture and challenges in walking.
In closing – Demystifying Robin Williams Fight With Lewy Body Dementia
“Please, don’t worry so much. Because in the end, none of us have very long on this earth. Life is fleeting. And if you’re ever distressed, cast your eyes to the summer sky.” – Robin Williams
While Robin Williams is no longer with us, his legacy and how he made many feel will continue to live on.
With this article, we hope you are better informed about Lewy Body Dementia and other types of mixed brain disease. You can also learn more about other misfolded proteins, such as Abeta and Tau, and how they play a role in neurodegenerative diseases.
To help raise awareness for early detection for LBD, we offer brain health awareness quizzes on our website. We are here to provide you with the help and support you need to fight for brain health together.