What on earth is Lewy Body dementia?

Everyone was Dad’s friend.

The sad story of Karen and Danny

Until well into my dad’s dementia, I had never heard of Lewy Body.   My first exposure to the disease was when my friend Karen’s husband became forgetful, angry and stubborn.  Karen was confused; Danny, her mild-mannered husband in his early 60s, had never exhibited such behavior.  They went from doctor to doctor, seeking a solution.

Initially Danny was diagnosed with Lewy Body dementia, an unusual name for a disease.  I learned about Lewy from Karen.  My husband befriended Danny; when they went out for lunch my husband ordered and managed the payments.   When Danny entered the nursing home my husband faithfully visited him and watched him deteriorate mentally and physically.  Eventually they concluded Danny didn’t have Lewy Body dementia; he was latently diagnosed with frontal-lob dementia.  Lewy and other dementias are sneaky and deceitful.

Danny died in his 60s and Karen became a widow.  At his funeral she played “Somewhere Over the Rainbow”.

The Scientific Description of Lewy Body

Per Web MD:  Lewy bodies are named after the scientist who discovered them, and are made of a protein called alpha-synuclein. When they build up, they keep your brain from making the right amount of two important chemicals. One of them, called acetylcholine, affects your memory and learning. The other, called dopamine, affects how you move, your mood, and your sleep.   Lewy Body dementia

There you have a mini-scientific explanation.  It falls short of the physical toll ravaging body and mind. It doesn’t touch the emotional and financial impact on families.

Recent celebrities having Lewy Body include:

  • Robin Williams the great comedian committed suicide, possibly related to his undiagnosed dance with Lewy. Robin suffered from depression, anxiety and delusions.  Lewy imparts those symptoms on its victims.  Robin William’s widow wrote about Lewy in “The terrorist inside my husband’s brain.” The Terrorist Inside.
  • One of my best teen memories is driving around listening to Casey Kasem’s “Top 40”.  Top 40  Casey Kasem’s voice was silenced because of Lewy.   That is another insidious trait of Lewy, silencing its victims.  I cried when I heard of this diagnosis that tore his family apart.
  • Ted Turner, the founder of CNN, recently revealed he has Lewy Body dementia. He couldn’t remember the name, however, because Lewy steals the memory.   Turner said, “It’s a mild case of what people have as Alzheimer’s. It’s similar to that. But not nearly as bad. Alzheimer’s is fatal.” Ted Turner Interview

Oh my, Ted Turner, I knew another man who had similar thoughts.  Be thankful you don’t know the future.

If I am ever diagnosed with Lewy Body disease, don’t tell me.

My next blog will be the end. Not the end of the blog, but the end of the dance.



4 comments on “What on earth is Lewy Body dementia?”
  1. Anonymous says:

    Well written and interesting. I didn’t know your Dad had this. I look forward to reading more! I loved my uncle!


  2. Debbie says:

    The above message was from me.


    1. Nancy P says:

      Thanks Deb. Love you cousin.


  3. Melissa Seestrom says:

    Thank you for sharing Nancy!


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