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meet larry

after 6 years of misdiagnosis, Larry Gross was diagnosed with Lewy Body Dementia

Larry's neurologist, at this time, indicated that he was somewhere in between mild cognitive impairment and clinical dementia. Following his diagnosis, he had a hemorrhagic stroke on Feb 2, 2020 which led to 2 weeks in ICU, 2 weeks on the neuro floor and 1 month in a post acute care center for rehab where we noticed the hallucinations and anxiety were at an all time high. When he was released to go home the first week in April is where our journey to find some answers and help truly began. Having been thrown into this upside down disease, tensions arose, but we scrambled to do the best for our dad. We decided to talk to his neurologist and this is what he told us. He wished he could refer us to somebody that knew how to help but we were informed that there were NO resources that he knew of currently available. NONE. So with “screwy Lewy" and all his friends (and enemies)”, we began a new life that we knew little to nothing about. We delved into books, web sites, support groups, etc. and decided to put the information we gathered together in a concise format for anyone who is affected by the disease of dementia.
When one hears of Lewy Body dementia most people only hear the word “dementia” and think they know what that looks like. Although all dementia can be devastating to not only the person being diagnosed but to all the loved ones surrounding them. We hope to be a part of your journey and help however we can.

Dementia with lewy bodies is the most misdiagnosed of dementias

If you are reading this you have probably been informed that you or a loved one has been given a diagnosis of dementia. However, not until an autopsy of you or your loved ones brain can a diagnosis of Alzheimers or dementia with lewy bodies be accurately given. There are signs and signals that can separate the two. It was explained to us that dementia with lewy bodies is a back and forth of totally normal days to bottoming out days, then back to normal days. Whereas, Alzheimers is a gradual decline.
The Larry Gross Lewy Body Awareness FND is a registered 501(c)3 organization.
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