Robin Williams’ Widow Writes A Devastating Account Of His Final Year

[Stellar]

More :HuffPo

Susan Schneider Williams, Robin Williams’ widow, wrote a devastating account of her husband’s final year of life before he died by suicide in 2014.

An autopsy revealed that Robin Williams had Lewy body disease, an umbrella term used to describe both Parkinson’s disease dementia and dementia with Lewy bodies. In a letter this week addressed to neurologists, Susan described the “terrorist” who lived inside her husband’s brain and caused him to forget his movie lines, plagued him with delusions and paranoia, and engulfed him in fear, anxiety and depression.

Her account of his medical journey illustrates just how difficult it is for a typical Lewy body disease patient to get properly diagnosed, how prescribed medicines for misdiagnosed conditions may have exacerbated his symptoms, and how patients who are properly diagnosed have no cure for their disease.

“I am not convinced that the knowledge would have done much more than prolong Robin’s agony,” she wrote. “Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin’s steep and rapid decline was assured.”

Physical symptoms lead to cognitive pro

[B2G]

1. This is so tragic

He was a genius. I can't imagine what he must have gone through. So incredibly sad...

[Stellar]

2. It makes me so sad!!!

[LWolf]

3. His suicide hit me so hard

that I haven't been able to watch him on screen since. It helps, I guess, to put a name to what was torturing him.

[Stellar]

5. That gave me chills..Me either!

I can't watch him on anything. From Mork and Mendy to the last movie I've watched of his, 'Good Will Hunting'. I've been trying to catch up on his other movies but I can't...

[ailsagirl]

19. I'm the same-- can't watch anything with him in it

Too sad

[TexasBushwhacker]

23. I'm able to watch him

But it often brings a tear to my eye. "Awakenings" was especially poignant.

[LWolf]

25. It would be.

I keep thinking that eventually I'll be able to watch him again; maybe this news will help that happen.

[mnhtnbb]

4. The neurologist who is following my husband

was one of the docs who was asked to review Robin Williams' medical records.

There really is great difficulty in diagnosing LBD. At our last visit, the doc handed me a book written by
the wife of a former LBD patient (now deceased). She documented that they'd been to 11 docs before
the LBD diagnosis was made--and confirmed by the 12th--the neurologist we're seeing.

If anyone is interested in reading more about the disease, the LBD Association website is a good place to start.
If anyone has a family member that they suspect might have LBD and would like to talk to someone who is
going through this--although my husband is in the early stages--please pm me.

https://www.lbda.org/category/3437/what-is-lbd.htm

[Justice]

11. I am sorry - you are so kind to offer to help others.

[mnhtnbb]

13. Thanks. Friends-- whose parents were diagnosed with LBD long after

they'd been having all these strange symptoms that would come and go-- put me on to LBD. I'd never heard of it.
My dad developed a post-operative dementia when he was 89 and my mom never had any dementia symptoms
even though she lived to 91.

I can say that when I read the list of symptoms on the LBD website almost two years ago, everything fell into place. It really does make a difference
to get an early diagnosis because there are medications to avoid that can make symptoms much worse.

My husband is currently on several meds that are really helping. And that's the approach with the disease at this point--to extend
the early stages of the disease to maintain a "normal" life for as long as possible--because it is progressive and there is no cure.

[smirkymonkey]

6. How tragic!

It must have been awful for him in his final days. I can't imagine his agony.

[MicaelS]

7. How terrible.

I never even heard of this disease before. RW was a genius.

[lonestarnot]

8. Such sadness we endure in life at times.

[Iggo]

9. As I approach an age that's closer to sixty than fifty...

...I try not to be afraid of what may happen if my brain and body turn against me like that.

Some days I'm more successful than others.

[awoke_in_2003]

21. Losing my brain

scares me much more than body.

[Guilded Lilly]

10. Still don't want to admit he is gone.

The unfairness, the sadness, the deep tragedy.
Life can be so monstrously cruel.
He brought such rampant joy to so many people.

I miss his glow.

[FrodosPet]

22. Robin Williams is not gone

Only his body is. Which will make it a hell of a lot harder to shoot any more movies. But he already has a pretty damn good collection to keep us and future generations for a LONG time.

Please, to honor him, laugh at him, don't cry about him

[BlancheSplanchnik]

24. Laugh with him...

Laugh at him didn't sound quite right, even though I know what you meant.

You're right, he was all about laughter.



Doesn't hurt to grieve the loss, though. Sometimes you just can't hold it in.

[dembotoz]

12. we still deny the hell that long term care givers go thru

the person you love is on a highway to incapacitation and there ain't nothing you can do.

when we stopped being a fun to be with couple due to my wifes cancer most of the friends just sort of drifted away.

not that it bothered me much...i was kept busy with her decline.....but she would have loved some visits.

the ones i feel sorry for are those who battle each and every day for years and years....
more guts and strength than i have

[fleabiscuit]

14. Heartbreaking. nt

[Rex]

15. I am still fucked up from his suicide.

Robin Williams was my everything growing up and became a security blanket as I got older. I relied on him being him and always making me smile or laugh. I guess it was stupid to think he would be around forever.

[nolabear]

17. Not stupid. The Robin that lives inside you still can be there. That's important too.

I used to believe a very sustaining story about an ancestor when I desperately needed to hang onto something that made me feel as if I had more inside me than what I was having to live through with family. I found out eventually that the person was not what I'd believed. But the story was still there, in the ways it had shaped me and helped me to feel pride and to draw strength.

I'm sorry for what you lost. But I'm glad for what you had, and still do.

[Rex]

18. Thanks nolabear, we all have a part of Robin inside us.

That kid that wants to show off in front of the crowd and make everyone laugh. Williams was a very special person, once in a lifetime imo.

[nolabear]

16. I also sorry this happened to him. I hope his family finds some peace and understanding.

Suicide scares us. It's always tempting to believe things could have gotten better or the victim was able to think of the pain they caused others. That's often just not the case, and the only path to follow is one of tenderness and sympathy for everyone involved.

[Boomerproud]

20. He was such a pure, special soul it's so hard to think he's not here anymore.

Those blue eyes. I pray he has peace.

[Hoyt]

26. On top of all that, he had to struggle with considering suicide. We need legal Euthanasia.

It might have given him a bit more time, at least relieve people of worrying about their future and families when they are no longer able to care for themselves in any respect.

Sad story.