Actor Robin William's widow has published a letter that doctors say could help thousands

Posted at 6:11 PM, Oct 04, 2016
and last updated 2016-10-04 18:11:22-04

To the world, Robin William's was a funny man full of life. But to his wife, Susan Schneider, her best friend struggled with demons.

Doctors told Schneider her husband suffered from Parkinson's disease. Now, in a letter published in the Journal of the American Academy of Neurology, we know that's not true. An autopsy revealed her husband suffered from Lewy Body Disease.

She titled the letter, "The terrorist inside my husband's brain"

Tampa Neurologist Dr. Rosanna Garner says LBD affects 1.5 million Americans. It typically strikes at around 60, but can start as early as 50.

"It's not really rare but it can be hard to diagnose," said Dr. Garner.

Florida's aging population means there's more patients in this state. Garner said Schneider's honesty could have a far reaching impact.

"This may help increase awareness to the public," said Dr. Garner.

The biggest impact of early detection, regulating medication. Dr. Garner said these patients should not take certain pills, including some antipsychotics and even Benadryl.

"It can make them much more paranoid," said Dr. Garner.

Schenider wrote that's exactly what happened to her husband, he showed bouts of paranoia and anxiety. She's not sure if a proper diagnosis would have saved his life. But she would have known what to look for.

Dr. Garner said her letter could help other families. It's also a reminder to doctors to stress one specific early indicator of LBD that sets it apart from other neurological diseases like Parkinson's

"When people are asleep they get up and start acting out their dreams," said Dr. Garner.

Right now there is no cure for LBD. But Garner feels the letter also offers hope.

William's celebrity name could help with research funding.

It reignited her fight to help fight a cure and she feels strongly it resonated with other neurologists

"It basically encouraged us to continue the fight," said Dr. Garner.

Read the letter here: