Beloved comedian and actor Robin Williams’ suicide in 2014 shocked the world–and left his widow, Susan Schneider Williams, looking for answers. It wasn’t until three months after his death that the autopsy report revealed the presence of Lewy bodies throughout his brain. Like many of the 1.4 million Americans with Lewy Body Dementia (LBD), Robin Williams’ battle with health problems did not lead to a timely or accurate diagnosis. Susan Schneider Williams now serves on the Board of Directors for the American Brain Foundation with the goal of helping physicians gain a deeper understanding of LBD so individuals may receive appropriate treatment. Here’s what we can learn about LBD from Robin Williams’ experience:
LBD Can Be Difficult to Detect
When Robin Williams’ symptoms began, they seemed unrelated: sleeplessness, insomnia, and an unusual level of stress and anxiety were a few of his early signs of LBD. Later, symptoms similar to Parkinson’s disease emerged, including a weakening of the voice and a hand tremor. According to Susan Schneider Williams, her husband’s fear and anxiety had “skyrocketed to a point that was alarming.” Despite access to the best medical care, Williams’ brain disease went undiagnosed. To those familiar with LBD, Robin Williams’ story doesn’t come as a surprise, as this condition’s symptoms often mimic signs of other physical or mental disorders. Since many health care professionals lack experience with LBD, it can take months before a diagnosis is determined.
LBD Is Often Challenging to Diagnose
Robin Williams was diagnosed with Parkinson’s disease before his death, based upon the classic signs, including a slow, shuffling gait, hand tremor, and weakened voice. Although he experienced severe depression and anxiety during the last few years of his life, doctors believed these symptoms were related to his past history with depression. However, LBD often presents with a host of mood and sleep disorders and may exacerbate existing or previously well-controlled mental illness.
The Condition May Progress Quickly
Once the onset of symptoms becomes noticeable, many individuals with LBD begin to experience rapid cognitive decline. This was the case for Robin Williams. Despite excellent medical care and a wellness regimen that included yoga and meditation, Susan Schneider Williams describes his decline as “steep and rapid.” The speed of progression is different for each individual. To learn more about the distinct stages of LBD, please visit this page.
As Robin Williams’ story indicates, Lewy Body Dementia is often an elusive disease that is difficult to determine and treat. Its progression can be gradual or rapid, depending upon the severity of the spread of Lewy bodies. If you believe that a loved one may be experiencing symptoms of LBD, prompt attention by a qualified medical professional is crucial. This journey certainly isn’t easy, and our team is here to provide insight and resources for those with LBD and their care partners. If you’d like to learn more about Lewy Body Dementia or need support or assistance, we’re here to help. Please contact us via email or call our helpline at 516-218-2026.
I’ve never heard of this in all my years in nursing. I would like to learn more!!
Thank you for writing and for your interest in learning more, Alison. Unfortunately, you are not alone in not hearing of Lewy Body Dementia even though it is the second most common form of progressive dementia after Alzheimer’s disease. Over 1.4 million Americans have LBD. We would be happy to speak to you by phone at 516-218-2026. This is our helpline number which operates from 8am to 8pm EST time seven days a week. We have much more information on our website as well at: http://www.lewybodyresourcecenter.org
my mum had this and died by suicide also
are there statistics about the link between the disease and suicide?
Dear Kiri,
I am so very sorry to hear about your mum. There are very few statistics about LBD and suicide at this time. From my understanding and experience of working work caregivers for many years, it is thought to be a low percentage. However, there is no reliable data as yet. I know there are some groups studying it right now.
To whom it may concern,
My name is Rania Sahas and I leave in Greece. I heard about LBD from my cousin Marisa Stefatos whose mother was diagnosed with LBD and unfortunately she isn’t with us anymore. I am 39 years old and unfortunately where I leave there isn’t enough information about LBD.
If there is any chance you could send me some information I would deeply appreciate it.
Rania, thank you for your email and your interest. Your cousin Marisa is one of our founding members. We work together to bring as much awareness to LBD as possible. I think the easiest way for you to gain information would be from our website which contains all the helpful information you would need to understand the disease. Please go to: http://www.lewybodyresourcecenter.org We also have a helpline at 516-218-2026 which is based in New York. Please don’t hesitate to write again with any questions.
THANK YOU for this informative e-mail. My husband was diagnosed with LBD after a long and stressful series of visits with different doctors-over many many years. My husband also had Parkinson’s disease since his early forties. After thankfully being referred to a neuropsychiatrist and having thorough and extensive testing, observation, and patient history, a diagnosis of LBD was made. That was 15 years ago and LBD was not widely known or familiar to the entire medical community. Yet, as my husband’s caregiver, the symptoms were indeed very different, severe, and with sudden outbursts from other forms of dementia. I struggled to get a doctor to truly listen to what I was describing–blaming everything on my being stressed- that constant denial by doctors of my concerns and my description of my husband’s symptoms was harder for me than the actual daily caregiving. More info has definitely been coming into the news and so much more is needed to help patients, caregivers, families, and the medical community. My husband passed several years ago yet his struggle -and mine- are burned into my memory.
Dear Ruth,
Thank you for taking the time to write this for everyone. I am sorry to hear of your husband’s passing. You are right that more information is now coming out. We work everyday to bring as much awareness about LBD to the general public and health care practitioners as we can. Our hope–while searching for a cure–is to have it recognized and treated correctly much more quickly.
I have those symptoms
Hi Latanya,
If you have any of these symptoms, please be sure to make an appointment with a neurologist. If you need help in locating one, please let us know.
My 67 yr old Father was diagnosed with Lewy Body Dementia a few years ago. His initial symptoms were anxiety, paranoia and then right handed tremors. He also had a significant hx of Afib since his late 40s. Unfortunately my father sustained a self inflicted injury the day after Easter and we had to remove life support last week. I’m looking for more information of any correlation between LBD and cardiac arrhythmias/ cardiomegaly.
Dear Melissa,
I have so sorry to hear about your father. Unfortunately, I don’t think there has been enough research on this topic as I haven’t seen any that show a specific correlation. Though there is research being done currently on LBD, there isn’t much at this point on further topics, such as this. If you do find something, please do share it. Sending support to you and your family, Norma
My husband has had early onset parkinson’s for 10 years abd he is 50. The cognitive symptoms started about a year ago abd a punch biopsy confirmed Lewy Body.
All I can say is you don’t ever want anyone in your family to endure this devastating disease. It robs them of everything and can be really horrific at times. I am still in shock that this is our life now.
Dear Mandy,
Can you tell us where he had the punch biopsy done? It hasn’t been confirmed. One research study suggests this may be an accurate way to diagnose but enough research hasn’t been done yet. The one research does speak about finding it in people who are younger.