“ I wanted to reach out to let you know I received my care package yesterday. THANK YOU! Within a few minutes of just glancing through it yesterday I have seen a lot that grabbed me. I am now sitting here reading the packet. I have it ready to carry every where I go.” - Mickey “I received my package yesterday. What a sweet surprise! I needed a mile on my face. trying to stay strong but sometimes I just break down. What a horrible disease this is. I’m afraid we have a tough road ahead of us. My honey is only 61 years old. No one deserves this!!” -Janice “I just got done reading all the information in your care package, next I will pass this along to my mom and my sister! This is great information and is extremely helpful. I’m eagerly starting the book today too! You both are doing such a wonderful job in spreading awareness and I too plan to do the same in the future. I believe my dad is in the late stage, coincidentally his name is Louie (thankfully spelled different than “screwy Lewy”). My mom had a stroke 3 years ago yet she loves to read so having this in writing is going to help her understand. I’m sure your dad was an amazing dad, it shows in all the work you are doing to help others manage this horrible disease! THANK YOU!” - Lisa “Our package arrived today. Thank you so much. It’s such a wonderful thing you are doing. I truly appreciate all of the information. Hopefully my daughters will find it helpful too. We’re all still trying adjust to this new life we have and it’s hard on all of us but arming ourselves with as knowledge as we can will help.” - Carolyn “I received you box of resources. It’s tremendous what you have done and all that you have put together. This book, is the same one that I had been eyeing. I’m thrilled to have it. I’m flying to see my parents tomorrow and taking these items with e to share. Thank you!!” - Candy “Just got my package. It is a lovely presentation. I am grateful to you. I was just planning on printing out the GEMS chart and to m delight you have included it in your folder. I am excited to share this information with my HomeHelpers. Again, thank you.” - Bo “Good Morning! Thank you again for your care package! I finally sat down and got through some and not only is it valuable information but it helped us, my sisters and I, not feel so alone. Thank you for everything!” - Amy “I just received the care package. I cannot thank you enough! I cried just browsing through the contents, it means so much that you and your family care enough to create all of this to help others. Thank you ever so much. What a wonderful thing you are doing!” - Beth

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About our organization

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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