Menu
“ 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
We didn’t start out looking for a dementia diagnosis. We started out looking for explanations. As daughters caring for our dad, we entered a season filled with appointments, referrals, second opinions, and more questions than answers. We became note-takers, researchers, medication trackers, and advocates. We documented patterns. We compared “good days” and “bad days.” We printed articles. We learned how to describe symptoms clearly and concisely to doctors. Eventually, we learned we were navigating Lewy body dementia (LBD). But getting there took time.
Lewy body dementia shares symptoms with both Alzheimer's disease and Parkinson's disease. In fact, it is the second most common type of progressive dementia after Alzheimer’s, yet it remains one of the least recognized. Because no single test confirms LBD, diagnosis depends heavily on clinical observation and detailed symptom history.
Because the symptoms overlap so widely, families often spend months — sometimes years — searching for answers.
If you’re noticing unusual cognitive fluctuations, vivid hallucinations, sleep disturbances, or unexplained movement changes in someone you love, document everything. Patterns matter.
If a diagnosis doesn’t fully explain what you’re seeing, ask again. Seek specialists. Research clinicians familiar with Lewy body dementia. Not all providers are equally trained in recognizing it. If you are walking this road, keep asking, keep documenting, and keep advocating.
The emotional toll is real. The uncertainty is heavy. The constant questioning can feel relentless. But when the diagnosis finally came, there was clarity. Not comfort - but clarity. And clarity matters.
If you or someone you love is navigating Lewy body dementia, our organization is here to provide trusted resources, education, and compassionate support so you don’t have to walk this journey alone. We would also be honored to mail a complimentary care package to families who need encouragement and practical tools during this season.
