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
For many families, the first time they hear the term Lewy Body Dementia, it raises an immediate question: What exactly are Lewy bodies? Understanding the name is often the first step in understanding the disease itself.
The Science Behind Lewy Bodies
Lewy bodies are abnormal clumps of protein that develop inside nerve cells in the brain. These clumps are primarily made up of a protein called alpha-synuclein, which, under normal circumstances, plays a role in how brain cells communicate. However, when this protein begins to misfold and accumulate, it forms deposits inside neurons. These deposits are what we call “Lewy bodies,” named after Dr. Friedrich Lewy, the scientist who first discovered them.
Over time, these protein deposits interfere with normal brain function. They disrupt signals between cells, affect chemical balance, and eventually lead to the death of brain cells. What makes Lewy bodies particularly complex is where they appear in the brain.
They can affect areas responsible for:
Because they impact multiple systems at once, the symptoms that develop are often wide-ranging and can feel unpredictable.
Why Symptoms Can Look So Different
Unlike some other neurological conditions that follow a more consistent progression, Lewy Body Dementia can present differently from person to person. This is because Lewy bodies do not affect just one part of the brain. Their presence in different regions leads to a combination of cognitive, physical, and behavioral changes.
For families, this can feel confusing. Symptoms may seem to come and go. Clarity may exist one moment and disappear the next. This variability is not random. It is a direct result of how these protein deposits disrupt the brain’s normal function.
The Challenge of Diagnosis
Because the symptoms of Lewy Body Dementia overlap with other conditions, diagnosis is often one of the most difficult parts of the journey. It is not uncommon for individuals to initially receive diagnoses such as Alzheimer’s disease or Parkinson’s disease. In many cases, it takes time, multiple evaluations, and a deeper look at the full range of symptoms before Lewy Body Dementia is identified.
This period of uncertainty can be incredibly frustrating for families. They know something is changing. They see patterns that do not quite fit. They are searching for answers that are not immediately clear.
From Understanding to Caregiving: Finding Clarity in the Journey
While the science behind Lewy bodies explains what is happening in the brain, it does not fully reflect what families experience each day. Caregivers of those with Lewy Body Dementia often navigate a condition that is complex and constantly changing. The path to diagnosis can be uncertain, and even after answers are found, the need to adapt never stops.
This kind of caregiving requires resilience, flexibility, and ongoing support.
Understanding what Lewy bodies are does not remove the challenges, but it does provide clarity. It helps explain unpredictable symptoms, validates what families are experiencing, and reminds them that they are not alone in the journey.
