Some people prefer Facebook more than websites. In the interests of broader public education, a new Lewy Body Dementia page on Facebook has been launched. Whenever I see something that is significant or valuable to the community, it will be posted there. Every post will be personally analyzed to ensure a higher level of trust and legitimacy and will have a summary or comment to allow very quick scanning, to keep the page easy to search, and to save you time in case a specific article is not going to be what you’re looking for.

Below, you’ll find the five most recent posts, which is automatically updated. There is a great deal of online content that is specifically intended to manipulate, provoke, deceive or get visibility for the wrong reasons. Finding, reading, researching, and analyzing each article takes significant time, and I want only the best and most trustworthy to appear.

Click the Facebook page and “like” it to see most of them on your Facebook timeline as they are added. I will ensure that this is never overwhelming, off-topic, or insensitive.
Disturbing dreams and dementia connection? The respected journal The Lancet indicates there is a connection. But when interpreting all research, critically assess correlation vs causation.
Nevertheless, this is an interesting development.
- From the article:
“Distressing dreams predict cognitive decline and all-cause dementia in middle-aged and older adults without cognitive impairment or Parkinson’s Disease - especially amongst men.”
They don’t mention LBD specificss as lot, but I suspect there would be a stronger connection to that than other dementias proportionally.
- Towards improved understanding. Timothy Hudson
I recently met Dr. James Galvin at the International Lewy Body Dementia conference in the UK. Smart, committed, and rather unexpectedly, very, very funny.
- Among many other things, he's advocating for improved diagnostics for Lewy body dementia (LBD). I'm fully on board for that! The article below has a 2.5minute audio clip that's geared towards clinicians, but is worth knowing no matter what your connection to LBD.
- Diagnosis is difficult, and typically "the average patient had to see more than three physicians on multiple visits, over the average duration of 18 months, before they finally received a diagnosis. An incorrect first diagnosis was given around 75% of the time.....and....To complicate matters, LBD can share symptoms with Alzheimer’s, Parkinson’s, schizophrenia, and other psychiatric conditions, making it challenging to diagnose."
- He is trying to remedy this by guiding "clinicians to an LBD diagnostic module, which more precisely delineates the symptoms associated with it and gives providers and researchers better tools to identify the disease.
- As many know, "misdiagnosis is a common problem that can have tragic consequences. In addition to not receiving the best treatments, misdiagnosed LBD patients can have severe reactions to incorrect medications, including death."
" "Previous diagnostic approaches lacked the granularity to make differential diagnoses between LBD, Alzheimer’s, Parkinson’s, and other diseases. We believe this new module will provide the necessary information to delineate these very different conditions and drive more rapid and precise diagnoses."
- Here's to improved diagnoses, that are faster, more accurate, and lead to better outcomes.
- Strength and courage to all! Timothy Hudson
One of the most common concerns I hear from my fellow family carers of persons with dementia, is that they feel their own memory is declining, and that it's the first stage of LBD or something similar. I chalk up many, if not most, of my own cognitive lapses to many acute, intense and prolonged stresses, which seemed to "cook by brain" for a long time. Much has improved as those stresses diminish.
- But how to know whether these are normal, or more worrisome signs, and what to do to prevent or delay onset of dementia? The featured neurologist differentiates between forgetting where you put your keys, for example, and what if you eventually find them inside the fridge? “That’s often the first sign of something serious – you open up the refrigerator door, and it’s the newspaper, or your car keys, inside. That’s a little bit beyond forgetful.”
- To delay or prevent cognitive decline, he implores people to remain socially active. Not always easy: and doubly so for carers. Keep your eyesight, read complex material, make sure your ears are tested and maintained to be able to hear and converse, and stop or reduce alcohol consumption.
- To all that I'd add a few: stay physically active, learn constantly and improve your diet. But this is good advice, and actively try to do these things myself.
- Strength, courage and health to all. Timothy Hudson
The connection between the stomach/gut and the misfolded alpha-synuclein proteins associated with Lewy Body diseases (including LBD and Parkinson's Disease) is gaining further traction in research.
- This article suggests that there could be both potential preventive, and treatment options by carefully attending to the gut biome. "A quality probiotic formulated with metabolically active strains and demonstrated to support gut health can be key. Quality probiotic formulations list the individual constituent strains used (Genus species strain), which allows for easy identification of any related research. For example, studies demonstrate a number of healthful mechanisms associated with specific strains:
+ Increased short chain fatty acid production: L. casei W56, L. acidophilus W22, L. paracasei W20, L. salivarius W24, L. plantarum W62, Lc. lactis W19, B. lactis W51/W52, and B. bifidum W2325
+ Strengthened intestinal barrier: B. bifidum W23, L. acidophilus W37, L. brevis W6326
+ Reduced bacterial toxin load and pathogen colonization: Lc. lactis W19, B. bifidum W23, L. acidophilus W3726"
- I firmly believe there's distinct health benefits for people with LBD by dietary modification, and this supports the premise in specific ways. Here's to improved treatment options as a result.
- Strength and courage to all. Timothy Hudson
We had great outcomes from exercise during the long dark of Lewy. It was never easy to maintain, frequently difficult to motivate, and always a challenge to do with safely, due to the Parkinsonisms (posture, imbalance, cogwheeling, fluctuating strength, sudden weakness, etc). Mood, digestion, functional mobility, and, I believe, cognition, all benefited significantly.
- Here's a small study that corroborates our experience. One key finding, buried in the details, is that "There was a significant improvement (lower score) in functional independence for all participants, with four participants improving by an amount equivalent to reversing the expected annual decline with disease progression. Additionally, there were significant improvements in physical function and strength, including sit-to-stand, total balance time, and maximal strength on the bilateral leg press and leg extension." I'd take that anyday!
- Hoping you can all keep as active as possible, and find a way to bump things up, somehow. Strength to all. Timothy Hudson
Hospice is often avouded because it feels too final, and like “I’m giving up.” It shouldn’t be. Please see if it might benefit you, and if you are eligible.
- After many years, and countless comments and posts in my support groups, one of the very most common is “I wish we’d got hospice involved much sooner.”
- from the article, “It includes regular visits by nursing staff, social workers, and clergy and is provided at the patient’s residence, an assisted living or nursing home, a dedicated area of a hospital, or a freestanding hospice.”
- There are often financial assistance options available as well.
- Well worth a read, and also considering if it’s time, or to be prepared for the future. Strength and courage to all. Timothy Hudson

I am not entirely sold on the idea of Facebook, but I absolutely agree it is critical to get information out to the broader public. If this doesn’t work well, it will be retired. Make sure you join a support group for Lewy Body Dementia — there are options online, by email, phone or in-person.

Strength to all!
Timothy Hudson

Updated September 21, 2018