TIBURON (KPIX 5) — A powerful essay from Robin William’s widow sheds light on the painful neurological disorder that made the beloved actor take his own life.

When Williams died at his Tiburon home in 2014, a simplistic rather narrative emerged about his lifelong battle with depression. With the emergence of Susan Schneider’s heartbreaking essay, we now know it was much more complicated than that.

She titled the letter, “The Terrorist Inside My Husband’s Brain,” and published it in the medical journal, Neurology.

The genius movie star and comedian’s widow pens a poignant essay addressed to the scientists who are working on a cure for the disease that killed her husband.

Schneider writes that Williams was misdiagnosed at first. Doctors believed he had Parkinson’s Disease, and that’s what he thought he had when he committed suicide two months later.

But subsequent autopsies revealed another disease had ravaged Robin’s mind. It’s called Lewy Body Dementia, or LBD, which has a strange variety of symptoms. It sent him into bouts of anxiety and paranoia.

“He would thrash at night and had terrible insomnia,” she wrote. “At times, he would find himself stuck in a frozen stance, unable to move and frustrated when he came out of it.”

“They didn’t have the answers to what was going on until after he died and that’s an all too common story,” says Doctor Kate Possin, a UCSF professor of Neurology.

Possin has spoken to Schneider, and the fact that he didn’t know quite what was ailing him was a major contributor to his death.

“As we’ve learned from that really beautiful letter from Susan, they were suffering with a lot of symptoms they didn’t have the answers to, struggling with unknown reasons for feelings of extreme anxiety as well as other symptoms like gastrointestinal symptoms or spacial dysfunctions — other memory problems that they didn’t understand.” says Possin.

“This took over their lives. And I understand from Susan that this is why he decided to take his life.”

Would a proper diagnosis have made a difference? Schneider has mixed feelings. On the one hand, LBD has no cure so it would have been a very cruel way for Robin Williams to die. On the other hand, it might have given them peace to know just what was breaking down his mind.

Schneider says she shared their personal story in hopes it would help doctors understand patients grappling with LBD, their spouses, and their caregivers.

“Perhaps this will add a few more faces behind the why you do what you do. I am sure there are already so many… Not only did I lose my husband to LBD, I lost my best friend.”

Comments (8)
  1. Dr. Oral says:

    Thank you Susan, for the inner strength that it took of you, to come forward with this information, and share it with everyone here. While you were the most close to your husband, know that there are thousands, if not millions, that miss your husband, and the contributions that he made …. my best rememberance is “The Christmas Show” from Mork & Mindy …. explaining that it IS NOT material gifts that mean something, but the memory of things which make us all happy. Thank you and the doctors, for understanding what happened, so that others in the future, might be treated correctly ….. even if there is not medical treatment ….. at least the treatment of love and compassion given to the one who is suffering and to provide as much love and support from friends and family that can be given. Not only I thank you Susan …. but everyone who reads the article will say thank you for doing what you did. May you find and be granted inner peace with what you did …. for we all stand behind you ….. and are here for you. Sincerely, Clarence

  2. Marley says:

    How much has the family actually donated to combat this disease? Who cares about a letter? How does this advance science? Oh wait, it doesn’t.
    Nothing will change and all this letter does is increase the demand for Robin William movies which will put even more money into the pockets of the Williams family.

    1. Seth V says:

      This letter sounds like nothing more than a publicity stunt for the family to get media coverage. Yeesh!!!!!!!!!

      1. Darren says:

        I doubt that LBD is even a real thing. This is simply a pity piece so that more of his movies will be in demand and royalties will flow to the movie companies.

  3. Bobby Booby Gee says:

    With all the important news in the world, who cares about some comedian who made more money than most people will ever have in their entire lives?

  4. Kristal Ford says:

    I decided to share this to help someone out there who is still held with Parkinson’s.
    My dad suffered from parkinson’s for 18 years and we traveled round the world from one hospital to another neurologist and spent thousands of dollars and even got scammed in this process of seeking a cure and the problem still persisted. He acted weird and aggressive and this was so scary. All thanks to Dr Lusanda who was able to use his herbal medicine to cure him permanently. He is one of the Honest men out there. If you want to contact him on how to get this herbal medicine or for info just reach him directly on drlusandaherbal(AT)gmail(dot)com or website on www(dot)drlusandaherbals(dot)weebly(dot)com Thanks admin.

  5. Trish George says:

    OMG! What kind of people are you to post such horrible comments! Pathetic, jealous losers! Robin’s wife wrote the letter to help others and to bring Lewy Body disease some much needed attention. My brother died of this horrible disease last year and yes it is real Darren! Your ignorance is unbelievable.
    Shame on all you you haters……I truly hope no one that you love ever suffers from this disease.