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Support & Insight for the Autumn of Life

Robin Williams’ Wife Shares Their Lewy Body Dementia Journey

VIDEO:

“Neurology,” the prestigious brain journal, published insights from Robin Williams’ wife, Susan, into Lewy Body Dementia. Watch Susan join “The American Brain Foundation” for a TV interview about Robin’s battle with dementia.



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  • CBS News
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Anonymous
Anonymous
6 years ago

My mom was not properly diagnosed and because she was 85,no autopsy was performed. She had some many of the LBD symptoms, but the most telling one was that she knew something was wrong. This terrible disease took her August 10, 2016. PLEASE don't just settle for a diagnosis of Alzheimer's.

Icantbreathe.blog
Icantbreathe.blog
6 years ago

I agree. My husband's third or fourth neurologist stopped at Alzheimer's but it didn't still right with Mr after reading the book, "Still Alive.". This was different. So, moving to the next one who did a DAT scan for dopamine levels could distinguish between Alz and Lewy Body. Different progression, symptoms, treatment, etc. Not that there is a cure but the shame if we had accepted one diagnosis. His quality of life, and mine, alone, never mind life span, etc. could all have been negatively affected. Be your own best advocate!

Mame
Mame
5 years ago

My daughter was diagnosed with PPA one of the Dementia diseases, meaning "Primary Progressive Aphasia". We searched endlessly looking for answers to her symptoms that had presented. I have learned much since the beginning of this dreadful journey. She was diagnosed at 52, and of course it had been coming on for years it is written but the family had no idea. It is heart breaking as she is losing her cognitive skills like speaking, writing, reasoning, and memory. She now has problems opening doors with keys, using computer and cell phones. She got into an elevator yesterday and forgot to punch floor 3, just stood there. She will turn 55 on Sept 8 and I am trying to get her moved into my apt complex for seniors. I want her to keep as much independence as long as possible but be close to me for observing her mood, abilities. The time will come when she will need someone living with her, I'm afraid that could be approaching and it breaks my heart. I lost my youngest daughter 9 years ago to breast cancer and fought an 8 year battle. She passed at 42. This was horrible and took a toll out on my daughter with the dementia the doctors said. They were very close. I pray for a cure, surely we can beat this and save lives. This daughter was like many, the sharpest knife in the drawer, accomplished, corporate admin asst to the executives until the Dementia showed up on her door step. Please pay attention I am educated that this is in epidemic stage and it could wipe us out. Donate your money for research we, must find the cure, or we are all doomed.

B. Berger

B. Berger

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