LAS VEGAS, Nevada – It could have been out of a movie: Susan Schneider Williams passionately addressing a crowd of more than 300 people — many with Lewy body dementia in a large conference room on the bottom floor of the iconic Caesar’s Palace.
I know I’m safe with that one.
I believe, a record was set.
The name of the deadly brain disease ‘Lewy body dementia’ was uttered more in an 8-hour conference than it has ever been uttered. At least, I’m pretty sure. Maybe it’s the ‘most times Lewy body dementia was uttered in a casino’ record.
It’s working out OK by the way: dozens and dozens of people with dementia walking around a maze of a building. Some on medicines whose side effects include loss of impulse control in areas regarding sex, gambling and shopping.
(Talk about a demographic, the Caesar’s event planner was probably thinking when booking the Lewy body group..)
Of the 300 or more attendees at the International Lewy Body Dementia Conference there seemed to be equal parts academics and those living with Lewy body and their caregivers.
You see, Lewy body, the second most prevalent form of degenerative dementia after Alzheimer’s has an identity problem. Few know what it is.
So saying the word is important in a world of acronyms representing diseases. In fact the Lewy Body Dementia Association is working on reassessing the verbiage. A task force is focused on ‘Nomenclature’ is in the works. Names are important because if no one names it, no one funds it – except through the trickle-down theory.
Susan Williams talked about how she met Robin in an Apple Store, he was wearing Camo. “He loved Camo,”she said.
Like when the National Institutes of Health last year released its announcement about 10’s of millions in funding for “Alzheimer’s and other dementias”
Williams, the daughter of a pathologist,said her husband had a bad case of Lewy body and he thought he was losing his mind. He had never felt anxiety like he felt, she said.
” Robin was an extreme case of LBD with deep concentration of Lewy bodies in his amygdala had very high cortisol,”she said. His depression made LBD diagnosis harder.
Williams described it as ‘Whack A Mole’ — you knock down one symptom and another pops up.
In 2013, they spent 10 months chasing symptoms before his death Nov. 3.
“He never knew his diagnosis” she said.
More to Come …
Thanks to Lori Oliver, freelancer, for her help.