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.
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
Excellent article that clearly explains the differences between Lewy Body Dementia (LBD) and Alzheimer's Disease (AD). This would be particularly useful to explain the differences to people who are most familiar with AD, but have likely never heard of LBD.
- It covers age of onset (earlier for LBD), life expectancy (shorter for LBD), quality of life (lower for LBD), treatment options (better for AD), and gender differences (more men have LBD, more women have AD).
- One particularly interesting tidbit is the belief that the shorter life expectancy has to do with the falls that so often occur in people with LBD. I'd not heart that before.
- Worth sharing with those newer to the condition, particularly.
- Strength and courage to all. Timothy Hudson
A huge number of people have their first encounter with Lewy Body Dementia after a hospital stay for another reason, but during which delirium becomes profound.
- here’s an interesting case study that appears to suggest that an EEG scan of a person who is hospitalized and experienced delirium will be different, and that it can be used as a prodromal indicator of later developing LBD.
- In all my many years of very active LBD support group participation and administration, hospital-induced delirium is the most common predecessor of the LBD that soon becomes evident.
- Here’s hoping delirium can be more effectively avoided, and that might help act neuroprotectively, delaying any further Lewy symptoms.
- Strength to all! Timothy Hudson
Young onset Lewy Body Dementia is challenging, particularly since its very rare, and unexpected, and diagnosis is challenged by, logically, looking for another cause, since only 4% of diagnoses of LBD occur for people 65 or younger. Capgras Syndrome ( a false belief that an identical duplicate has replaced someone or some thing significant to the patient) is a symptom that accompanies LBD between 8% and 40% in clinical cases.
- This is an interesting example of a 53 year old male, and may illuminate the experience of others. Like many who experience this condition, Seroquel/Quetiapine (a non-traditional anti-psychotic) was used as primary treatment. The patient was unable to tolerate cholinesterase inhibitors due to a separate health issue, which would typically be used before going to an anti-psychotic drug.
- Strength to all! Timothy Hudson
Although this article is about the experience of hallucinations and delusions in Schizophrenia, the premise holds also for LBD: that merely identifying whether a person has them at all does not give much insight, and may lead to a very inaccurate understanding of the experience, which can also affect treatment.
- For example, diagnosis of both mental illness and dementia tends to rely at least partially upon, as the article says, "conditions (that) are defined like scorecards: You must have X of these Y symptoms for Z months to have a particular mental illness." For example, it seems utterly arbitrary that a diagnosis of Parkinson's Disease Dementia (PDD) or LBD is exclusively based on the order of presentation of symptoms, when the actual condition is fundamentally identical after about one year.
- It is possible that Artificial Intelligence (AI) and machine learning can help tease out the subtleties that subjective descriptions of large numbers of people provide into quantifiable datasets that can then be applied more effectively.
- Better understanding of individual's experiences should help analyze how best to treat them. This is being done increasingly with dementia it seems, where treatment is not begun if a person has hallucinations, but when they become upsetting. But there's always room for active improvement: getting better insights, and having those with direct, lived experience providing those insights seems indispensable to improving treatments.
- May we all become better equipped to hear, with open ears, and with more depth, towards enlightened outcomes. Strength 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