Robin Williams Had Dementia

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(CNN)Comedian Robin Williams' widow, Susan Williams, said she and her husband "were living a nightmare" in the months leading up to his death.

 

"My best friend was sinking," an emotional Williams told ABC's Amy Robach in an interview that aired Tuesday, her first since Robin Williams killed himself in August 2014.

 

Williams said she's spent the last year trying to get to the bottom of what led him to take his own life. Contrary to what most people think, she said, it wasn't depression, nor was it a re-emergence of his longtime struggles with alcohol and drug addiction.

 

Robin Williams had no alcohol or illegal drugs in his system; he'd been sober for eight years, his wife said.

 

 

What drove her husband to suicide, "was what was going on in his brain," Williams said.

 

"The chemical warfare that no one knew about."

 

'Chemical warfare'

 

That "chemical warfare" that doctors conducting Robin Williams' autopsy discovered was Lewy body dementia.

 

Though not nearly as well known (or talked about) as Alzheimer's disease, which accounts for more than half of dementia diagnoses in the United States, Lewy body dementia, or LBD, is the second most common type of progressive dementia.

 

Nearly 1.4 million Americans are known to have the disease, but because it's a relatively "young disorder," Angela Taylor, director of programming for the Lewy Body Dementia Association said, that number is likely much higher.

 

 

LBD is caused when normal proteins in the brain begin to aggregate, forming clumps called Lewy bodies that, as they spread, "muck up the ability for the brain to transmit signals," said Cleveland Clinic neurologist Dr. James Leverenz.

 

Robin Williams: Full of demons, full of heart

 

Like Alzheimer's disease, symptoms of LBD include cognitive problems like confusion, reduced attention span, and memory loss, Taylor said.

 

But LBD also affects a patient's movements, as well as their mood, making it a "triple threat," Taylor said.

 

"It's not just memory, it's not just movement, and it's not just behavior. It's a combination of all three, which makes it difficult to diagnose and difficult to treat," Leverenz said.

 

 

Susan Williams recalls thinking her husband was a hypochondriac, when, starting in November 2013, every month he seemed to complain about a different ailment.

 

Williams visits a sick child in a scene from the film Patch Adams in 1998.

 

Williams donates blood at the Irwin Memorial Blood Center in San Francisco on September 11, 2001.

 

 

Upon his death, Williams; wife, Susan Schneider, said, This morning, I lost my husband and my best friend, while the world lost one of its most beloved artists and beautiful human beings. I am utterly heartbroken

 

e critically acclaimed "Patch Adams," he played a doctor who used humor to help heal his patients

Actor-writers Matt Damon, left, and Ben Affleck, right, pose with Williams, holding the Oscars they won for "Good Will Hunting" at the 70th annual Academy Awards in 1998. Damon and Affleck won for best original screenplay, and Williams won for best supporting actor.

Williams donates blood at the Irwin Memorial Blood Center in San Francisco on September 11, 2001.

U.S. Postal Service team rider Lance Armstrong rides with Williams during training on a rest day of the 89th Tour de France cycling race in Vaison La Romaine on July 22, 2002.

Williams plays Rainbow Randolph in the 2002 black comedy "Death to Smoochy."

Williams and Oscar host Billy Crystal perform at the 76th Academy Awards show in 2004.

Williams poses for pictures with U.S. soldiers at the main U.S. base at Bagram, Afghanistan, on December 16, 2004.

Williams in 2007's "License to Wed."

Williams and Susan Schneider arrive at the premiere of "World's Greatest Dad" in Los Angeles on August 13, 2009.

Williams at the pre-premiere party for "Happy Feet Two" at the Grand Connaught Rooms in London on November 20, 2011.

Williams poses for photographs in Sydney, Australia, on December 5, 2011. He and Australian director George Miller were in Australia to promote "Happy Feet Two."

Upon his death, Williams' wife, Susan Schneider, said, "This morning, I lost my husband and my best friend, while the world lost one of its most beloved artists and beautiful human beings. I am utterly heartbroken."

<a href="http://www.cnn.com/2014/08/14/showbiz/robin-williams-advice/">Robin Williams</a> died August 11, 2014, at age 63. Williams&#39; peers regarded him as a brilliant actor and comedian. His friend <a href="http://www.cnn.com/2014/08/19/showbiz/tv/david-letterman-robin-williams-tribute/index.html">David Letterman remembered him</a> as "nothing we had ever seen before." Click through to see moments from the beloved actor&#39;s remarkable life.

Williams first shot to stardom with Pam Dawber in the sitcom "Mork &amp; Mindy" in September 1978.

Williams attends the Robin Williams Opening Party on April 11, 1979, at Studio 54 in New York City.

This 1982 file photo originally released by Warner Bros. Pictures shows Williams as T.S. Garp from the film "The World According to Garp."

Williams and his first wife, Valerie Velardi, join a huge number of photographers packed into singer Paul Simon&#39;s apartment to celebrate Simon&#39;s wedding to actress Carrie Fisher in New York City on August 16, 1983.

Williams, center, takes time out from rehearsal at NBC&#39;s "Saturday Night Live" with cast members Eddie Murphy, left, and Joe Piscopo on February 10, 1984. Williams would appear as guest host on the show.

Robin Williams was honored during 2014&#39;s Emmy telecast with a tribute led by friend Billy Crystal, who hosted the "Comic Relief" benefits with Williams and Whoopi Goldberg (seen here in 1986).

Williams enjoys music through a headset in a scene from the film "Good Morning, Vietnam" in 1987.

Williams portrayed a teacher in the movie "Dead Poets Society" in 1989, one of his first mostly dramatic roles.

Williams went to all lengths to stay with his children in the 1993 movie "Mrs. Doubtfire."

From left, Bonnie Hunt, Bradley Pierce, Kirsten Dunst and Williams hold one another in a scene from the 1995 film "Jumanji."

Comedians and co-hosts, from left, Billy Crystal, Whoopi Goldberg and Williams sing and dance the 1940s-era opening number to "Comic Relief VII" on November 11, 1995, in Los Angeles.

Jay Leno laughs as Williams jokes around during a taping of "The Tonight Show with Jay Leno" on November 13, 1995, at the MGM Grand Hotel in Las Vegas.

Williams and Nathan Lane starred in the film "The Birdcage" in 1996.

 

 

Like a game of "whack-a-mole," Robin Williams was wrought with a severe pain in his gut, sleeplessness and constipation, she said.

 

After months of heightened anxiety and paranoia about his health, Susan Williams said, Robin Williams felt a small "sense of relief" when he was diagnosed with early onset Parkinson's disease in May 2014.

 

While Parkinson's disease, which like Alzheimer's has no cure, is hardly good news, Susan Williams said it was nice to have a possible answer for her husband's seemingly "endless parade of symptoms."

 

Parkinson's, a nervous system disorder that affects movement, could be blamed for the tremor in Robin Williams' left hand, but Susan Williams said it didn't explain everything.

 

Williams' powerful advice

 

'I miscalculated'

 

Susan Williams breaks down as she remembers what she witnessed on July 24, 2014, just months after Robin Williams was diagnosed with Parkinson's.

 

She was in the shower when she noticed her husband lingering by the sink. She opened the door to find him holding a bloodied towel, a severe gash on his head.

 

"Robin, what happened?" she screamed.

 

She said he motioned toward the door, and said just two words, "I miscalculated."

 

Though she didn't know it then, Susan Williams said LBD had affected his vision and his ability to recognize and identify objects, like the door.

 

Susan Williams said despite his diagnosis, her husband of three years was happy.

 

"Lewy body dementia killed Robin," she told Robach.

 

Robin Williams' daughter speaks out about depression

 

Changing capacity to do things

 

As Lewy bodies form and take over different parts of the brain affecting body movement, mind and mood, patients suffering from LBD experience symptoms of a person with both Alzheimer's and Parkinson's, conditions that alone are devastating.

 

Because Robin Williams was a very active and very successful person, it's understandable that he would have grown depressed about his "changing capacity to do things he used to do," Leverenz said.

 

 

At age 9, she met Robin Williams while at a camp for sick children. In 1999, she got to perform with the comedian at a fundraising gala. "He was hilarious. I wish he had known how much we appreciated him, she said.

She and her family met Williams while on set. He struck me as a man who was kind and cared about children,; she said.

While stationed in Pakistan in 2002, she was thrilled to meet the comedic actor. Although they only spoke briefly, Dayrit said he could tell how genuine and sincere [Williams] is as a human being.

 

While serving in Afghanistan in 2002, Shelor attended one of the comedian;s performances for the USO. After the show, Shelor had the privilege of sitting next to Williams on a flight to Manas, Kyrgyzstan. During the flight, Shelor told Williams he was flying to Manas to find a woman he had met before, and was hoping to win her heart over.

Members of the U.S. Navy say meeting Robin Williams aboard the USS Harry S. Truman was one of thier fondest memories from their 2004 deployment in the Persian Gulf.    He met Williams and former U.S. astronaut Buzz Aldrin at a charity function in Canada in 2005. He loved watching Williams and Aldrin interact. (Williams) was this humble person who found himself speechless when another American icon had asked him for his autograph, he said.

He realized Williams was watching from the back entrance. Their producer invited Williams to come on stage, and he did a set with the whole group.

In 1996, was working with Robin Williams on the movie, Tyler, was playing with his Genie puppet on set when Williams walked over and did an impromptu puppet show for the boy and the 300 people who had gathered to watch.

Tuttle ran into Williams at the Los Angeles restaurant Spago. Afterward, he said he witnessed Williams giving money to a homeless man nearby.

 

His decision to use a belt to hang himself from his bedroom door was, in Susan Williams' opinion, his way of taking his power back, a painful choice for which she immediately forgave him.

 

After emergency responders realized they couldn't revive him, Susan Williams got to see him.

 

"And I got to tell him, 'I forgive you 50 billion percent, with all my heart. You're the bravest man I've ever known.'"

 

 

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I only briefly heard this mentioned yesterday, but if dementia is true, then I can only imagine how that must have made him feel. He had an incredibly quick and sharp mind, and the thought of slowly losing that would have been devastating.

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Yes DP. I was lucky enough to have dinner with him twice and he was not only hilarious but sharp as a tack.

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What causes Lewy Body Dementia?  Is it inherited?  Can drug use cause it? I wonder if that's what I've got?  My s/x's are so similar to what Robin Williams had going on:  gut pain, sleeplessness, constipation, memory, movement, behavior problems, etc.  My father had the same s/x's and had early-onset dementia.  I've got dementia and all those physical s/x's, too, brought on by the benzo's.

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What causes Lewy Body Dementia?  Is it inherited?  Can drug use cause it? I wonder if that's what I've got?  My s/x's are so similar to what Robin Williams had going on:  gut pain, sleeplessness, constipation, memory, movement, behavior problems, etc.  My father had the same s/x's and had early-onset dementia.  I've got dementia and all those physical s/x's, too, brought on by the benzo's.

 

Becks: Do you have these symptoms? Also first a list of risks for getting it.

 

Risk factors

By Mayo Clinic Staff

 

Although the cause of Lewy body dementia isn't clear, several factors appear to increase the risk of developing the disease. They include:

 

    Being older than 60

    Being male

    Having a family member with Lewy body dementia

 

 

Symptoms

By Mayo Clinic Staff

 

Lewy body dementia signs and symptoms may include:

 

    Visual hallucinations. You may see visual hallucinations, such as colors, shapes, animals or people that aren't there. Hallucinations may be one of the first symptoms of Lewy body dementia. Some people also may experience sound (auditory), smell (olfactory) or touch (tactile) hallucinations.

    Movement disorders. You may experience symptoms similar to those of Parkinson's disease (parkinsonian symptoms), such as slowed movement, rigid muscles, tremors or a shuffling walk.

    Poor regulations of body function. Blood pressure, pulse, sweating and digestive process are regulated by a part of the nervous system that is often affected by Lewy body dementia. This can result in dizziness, falls and bowel issues.

    Cognitive problems. You may experience thinking (cognitive) problems similar to problems experienced in Alzheimer's disease, such as confusion, reduced attention span and eventually memory loss.

    Sleep difficulties. You may have a sleep disorder called rapid eye movement (REM) sleep behavior disorder that can cause you to physically act out your dreams while you're asleep.

    Fluctuating attention. You may have frequent episodes of drowsiness, long periods of staring into space, long naps during the day or disorganized speech.

    Depression. You may experience depression sometime during the course of your illness.

 

   

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I don't have hallucinations ever.  I don't act out my dreams.  Thanks for the info.  I guess I just have nerve damage from the benzo's and Z-drugs.  I've been very sick since I got off the benzo's and Z-drugs with similar s/x's as Lewy Body Dementia.  I definitely have the dementia.

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What a pity , this man was incredible :'(. A cruel joke on all of us that we have to go thru these horrible diseases when we get older so we can leave this earth. My sister committed suicide when she was in her 40s, never knew why. I was in Germany at the time (were deployed there with the Air Force) My mother got ovarian cancer and refused all treatments and died within 5 years , to me that was suicide also. And now i have breast cancer.

Life is not easy. Praying for all of us!

Why Im so angry at times.

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What a pity , this man was incredible :'(. A cruel joke on all of us that we have to go thru these horrible diseases when we get older so we can leave this earth. My sister committed suicide when she was in her 40s, never knew why. I was in Germany at the time (were deployed there with the Air Force) My mother got ovarian cancer and refused all treatments and died within 5 years , to me that was suicide also. And now i have breast cancer.

Life is not easy. Praying for all of us!

Why Im so angry at times.

 

 

Geez lonetree. I guess I would be angry too. I bet if my mom had cancer she would refuse treatment too. You have too much on your plate. :'( I'm so sorry you also have cancer. I hope it can be fixed.

 

Becks: If you had dementia you would not remember this site, or the above posts.

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lonetree, I'm sorry about all your woes in your life and your diagnosis.  I hope you will get better.

 

benzogirl, I have dementia now and it's getting worse.  I've lost a great deal of my cognitive functioning within the past 3 years.  My friend told the doc when I went last April that I used to be intelligent with a good mind and now am barely functional. I have this website set as my homepage which is why I know how to get to it.  I can't really remember other ppl's post so don't address what they've written specifically, just generally usually.  I make many mistakes typing and have to keep changing things until it's somewhat understandable.  I burn dinner and can't cook much at all anymore.  I can't figure out how to put shoes and socks either.  I have trouble brushing and flossing my teeth, etc.  I don't wear outside street clothes because I can't figure out what to wear, I get confused and start to cry.  Yes, I've got dementia.  I can't even talk anymore without stuttering and crying.  I have brain and nerve damage and it's quite severe.   

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Sheesh, I'm sorry becks. Did you think once you heal it will get better? Or have you healed as much as you can? Now I am sacred for myself.  Me. A high dose long time user. You should sue, sue, sue.

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benzogirl, don't worry because I've gotten worse in the past 3 years since I jumped.  I haven't had the environment that allows me to heal.  I have extreme noise problems from outside, money issues, no health insurance, roof leaks, and no support here at home.  Plus, dementia and anxiety runs in my family.  My father started becoming forgetful in his 50's and was diagnosed with anxiety and hyperventilation syndrome when he was younger and drank alot of beer to try to calm his anxiety.  I have bad genes from him.  I had bad anxiety before I even took the benzo's.  I'm sure that's why I'm having a hard time.  Plus, I was on Z-drugs too and in tolerance and interdose w/d for years before I jumped off.  I think Z-drugs are especially nasty and no one talks about them much except on the Z-drug support thread.  I also didn't even do a good microtaper like I should have.  I have too many thing working against me externally all the time to heal.  I'm sure you'll be fine. 

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I hope so. I still hope for you. Luckily there is no history of dementia in my family. But some bad genes. But your posts seem right on to me. I would never have guessed.. :'(

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  We are all different Benzo girl. I posted on Becks blog about my friends mother that pass away in Sept. She had dementia and her symptoms were horrible. Biting and hitting, completing forgering every single thing. It would take 3 or 4 people to get her to shower or eat. My friend had to put her in hospice b/c she could not take it any longer.

People shouldn't be saying that they have this or that disease (dementia) without been dignose by a Dr or specialist on the matter , all it does is scare other people , specially on this forum.

I can only imagine a newbie reading something like this. Not every one that take or have taken benzos go crazy. I healed once and I would heal again, God willing.

    Regards and blessing

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I did go to the docs this past April and the doc told me and my friend that I wouldn't be able to live on my own much longer because of my low level of mental and physical functioning now.  I have a degree in the medical field and worked in the medical field.  I know what dementia looks like.  I have dementia.  Most ppl. don't get dementia when they get off the benzo's, but I did.  I may have had a stroke too.  I was diagnosed with Thrombophilia as well, so I'm at risk of stroke.  I think the benzo w/d stress may have caused a stroke.  Doc wants me to get a brain MRI, but I'm too disabled to get back in there to get one done.  Doc suspects a stroke or something else.  I know it was brought on by the benzo w/d.  Everyone's benzo condition is different.   

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I'll be praying for you Becks and I hope that someday you can moved out of the environment that you are in now. I think you will heal quickly . I dont know but I think having a crazy nabe may be fun sometime LOL.

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I wonder if Robin Williams had ever been on benzos??

 

God rest his soul.

 

With his Parkinson diagnosis he must've been very afraid?

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I wonder about that, too, Gard. if he had been on benzo's or even Z-drugs and then got the dementia, Lewy Body from that but the docs didn't know it was caused by the benzo's? 

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I wonder if Robin Williams had ever been on benzos??

 

God rest his soul.

 

With his Parkinson diagnosis he must've been very afraid?

 

From what I have read, Robin was happy with the DX of Parkinson's. He believed this was his trouble and could still work. When he found out he had dementia, that's when he hung himself. :'( :'(

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  We are all different Benzo girl. I posted on Becks blog about my friends mother that pass away in Sept. She had dementia and her symptoms were horrible. Biting and hitting, completing forgering every single thing. It would take 3 or 4 people to get her to shower or eat. My friend had to put her in hospice b/c she could not take it any longer.

People shouldn't be saying that they have this or that disease (dementia) without been dignose by a Dr or specialist on the matter , all it does is scare other people , specially on this forum.

I can only imagine a newbie reading something like this. Not every one that take or have taken benzos go crazy. I healed once and I would heal again, God willing.

    Regards and blessing

 

Lonetree: I know what is it like to have dementia because my next door neighbor has stage 3. I visit her often to keep her company and she does not make any sense at all. She is constantly fretful and asks the same questions over and over and over again. She does not recall having a husband of 40 years. And in the sense of the matter, Becks should know what he knows about himself. His doctor told him as much. I hope he is wrong. And he has been here since 2012 and you only from this June. So people like him may call you the newbie.

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Hi benzogirl,

I do belive becks is a lady and for been a newbie, I'M NOT. Have been reading this forum for years, I just starting posting recently.

BTW wish me a happy Veteran's day. Careful with the zeroquel and the trazadode.

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I have those problems, too, benzogirl, with not being able to remember or understand things.  I had to ask my friend what I should do with my mail when I'm done reading it because I couldn't figure it out.  Ppl. with dementia do fret and have anxiety because we know we are losing touch with reality and can't accomplish things anymore and are trapped inside our bodies and minds.  I put a bunch of papers out in the recycle bin and then realized they were all important papers with my name and other info. on them.  I panicked and realized I shouldn't have done that and then went out and got them and shredded them.  That's the signs of mild dementia.  I used to be able to make those decisions easily and now I can't.  Some ppl. with Parkinson's do have dementia.  My nabe has Parkinson's and I talk to him and he's alot like me:  doesn't talk much, can't remember things, trouble walking, etc.  I visit with them sometimes and his wife tells him what to do all the time since he can't make his own decisions.  I talk to him sometimes and he doesn't understand what I say either very well and then his wife will just answer me.  I can't express myself anyway anymore very well.  I wonder if Robin Williams had trouble expressing himself eventually?  He was brave to take his own life before he got really bad.  It's a horrible way to die, having dementia.  One friend's mother had dementia in the hospital she was in and used to cry and scream alot.  It's so sad.  I cry alot too because I get so confused and can't figure out what to do to take care of my responsibilities here anymore.   

[[Ga...]]

I wonder if Robin Williams had ever been on benzos??

 

God rest his soul.

 

With his Parkinson diagnosis he must've been very afraid?

 

From what I have read, Robin was happy with the DX of Parkinson's. He believed this was his trouble and could still work. When he found out he had dementia, that's when he hung himself. :'( :'(

 

I just read a new article by his wife.

 

She said he had started running into things.

 

It was part of the lewy body thing?

 

I think hidd probs were more serious than we knew.

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I heard about that, too, his loss of balance.  It's so cruel being damaged in the body.

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Hi benzogirl,

I do belive becks is a lady and for been a newbie, I'M NOT. Have been reading this forum for years, I just starting posting recently.

BTW wish me a happy Veteran's day. Careful with the zeroquel and the trazadode.

 

Happy Veteran's Day! I suppose you were lurking as a guest... I not so worried about the Traz, but very worried about this S, which I should never have taken in the 1st place. But my horrible insomnia got the best of me. Sorry, I forgot to look at Becks' profile.......

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I heard about that, too, his loss of balance.  It's so cruel being damaged in the body.

 

I heard about that as well, a while ago. I didn't know dementia caused that. I assumed it was his Parkinson's. Becks, I hope you have a hubby or a partner or family or a good friend to help you through this trial. From what you posted, it does see like early dementia to me. But then again I do not know how old you are. Anyway you cut it, this is very bad news indeed. I think that is the worst disease out there. :'( :'( I think I would prefer to have cancer instead. My own mom is starting to get cloudy now. But at least she is still able to watch Jeopardy.