“ 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

CAre Package Impact

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Definitions and Acronyms

LO: Loved One

LBD: Lewy body dementia, also known as: Lewy body disease, diffuse Lewy body disease and cortical Lewy body disease (cognitive issues first followed by Parkinson’s like physical symptoms)

DLB: Dementia with Lewy bodies

PDD: Parkinson’s disease with dementia (physical symptoms first followed by cognitive decline

ANS: Autonomic Nervous System This is the part of the nervous system that regulates key functions of the body including the activity of the heart muscle, GI tract, urinary tract and other internal organs.

CAPGRAS SYNDROME: A delusional misidentification visual misperception in which the patient delusionally believes that someone close to him (spouse, caregiver) has been replaced by a similar-appearing imposter. (Heartbreaking, this happened daily with our dad who TRULY believed our mom, his wife of almost 60 years, looked like his wife, had all the stories, but was NOT our mom.)

DELUSIONS: False, often paranoid, beliefs that can appear alone or accompany dreams, hallucinations, or actual events.  Typical delusions include this of abandonment, loss, persecution, grandeur, control, or misidentification.

HALLUCINATIONS: A sensory experience in which a person can perceive what is not there. Visual hallucinations are the most common with dementia and particularly with lewy body. Hallucinations can also be auditory (hearing), gustatory (taste), kinesthetic (body movement), Lilliputian (people and and things appearing smaller than normal), musical (auditory hallucination concerning music), olfactory (smell), or tactile (touch). 

SHOWTIME: A period of time, usually in the presence of someone other than his care partner, when the person with dementia involuntarily appears more aware than usual.

ADVERSE REACTION/PARADOXICAL REACTION: An unexpected, unwanted, or dangerous reaction to a drug, and usually the opposite of the usual effect.  

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