Nov 5, 2015

Lewy Body Website Crashes as Public Responds to Robin Williams Story

I brought this story up because it indicates how worried the general public is becoming about Alzheimer's and related dementias like - Lewy body dementia.

Robin Williams Story Lewy Body Dementia | Alzheimer's Reading Room

Consider this.
  1. More than 100 million American's have provided care or assistance to a relative, friend or neighbor with Alzheimer's.
  2. More than 50 million have had a family member or close friend with Alzheimer's disease.
  3. More than 175 million are worried or concerned about Alzheimer's or a related dementia.
Overall, most American's feel unprepared or feel they will be unable to meet the care needs of a person living with Alzheimer's or a related dementia.

Yesterday, Susan Williams, Robin Williams’ widow, spoke on Good Morning America (GMA) and in other media, about it taking the past year for her to learn that Robin was suffering from Lewy body dementia (LBD).

She believes that Lewy Body Dementia led Robin to take his own life.

Susan Williams explained that the original Parkinson’s diagnosis did not cover all of his symptoms, and he was unaware of the LBD diagnosis when he died.

Dr. Dan Kaufer, a member of the Scientific Advisory Council for the Lewy Body Dementia Association (LBDA), the only national health organization dedicated to LBD, explained that
LBD is commonly mistaken for Parkinson’s or Alzheimer’s disease, or a psychiatric disorder because of overlapping features.” Dr. Kaufer is Director of the Memory Disorders Program at the University of North Carolina in Chapel Hill, 
“Patients who are misdiagnosed may not receive potentially beneficial medications or are prescribed medications that make symptoms worse.”
“The LBDA has diligently shared this and other news about LBD for years to educate the healthcare community and families, but awareness has been slow in coming,” said Michael Koehler, president of LBDA’s Board of Directors. “Because Robin Williams was such a universally beloved actor and comedian, Susan Williams’ story has a significant impact in expanding awareness.”

This was clear to the Association shortly after the GMA interview aired, when calls came into the Atlanta offices of the LBDA from CNN, Time Magazine, The Guardian, and The New York Times, requesting interviews.

By day’s end the website crashed and was down for several hours. It is back up and running.

The website provides detailed information about differentiating LBD, Parkinson’s and Alzheimer’s symptoms; online and in-person support groups; research; treatment, and many other resources.

Lewy Body Dementia affects 1.4 million people and is the second most progressive dementia after Alzheimer’s disease.”

Custom Search - Lewy Body Dementia

About the Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is a nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families and caregivers. To learn more about LBD and LBDA, please visit

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