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.
Covering the mouth with a mask loses SO much meaning our faces can express. I was impressed with how effective it is and was astounded at how much more could be understood of emotion, expression and voice when the mouth is visible.
- I hope the prices drop and availability increases as this becomes more common. (40 masks cost $60USD, and in case you wonder, I do not get anything from the company for sharing the link, and have no affiliation whatsoever).
- Stay healthy and safe! Strength to all. Timothy Hudson.
Agent Orange and dementia: Lewy Science for Viet Nam vets. This new study does NOT show a causative effect, only a correlation. Here's a few highlights....
- Exposed vets were 1.68 times more likely to be diagnosed with dementia and were on average 1.25 years younger at diagnosis (67.5 years old versus 68.8 years old).
- If patients express concern about their history of exposure to Agent Orange, clinicians can suggest that it may be possible to offset their increased risk by engaging in a healthy lifestyle. Previous research has suggested that dementia risk may potentially be reduced through physical activity, cognitive activity, social engagement, and treatment of conditions such as depression, hypertension, and diabetes.
- Agent Orange contained the chemical Dioxin, which can remain in adipose tissue for decades after exposure. Myelin, the coating of nerve fibers, contains a high percentage of fat, and the dioxin in Agent Orange is highly lipophilic, so the herbicide could have a direct toxic effect on the white matter of the brain. And because dioxin remains in the body decades after exposure, Agent Orange could gradually impact the brain long before clinical manifestations become evident.
- I certainly don't take this as conclusive, and it does not differentiate in any way between the types of dementia, but considering the higher incidence, and that it's in veterans, I expect further research.
- Strength to all! Timothy Hudson
Here's a beautifully written, long tale of the author and his wife of 50 years, describing their life journey, and how Lewy gradually, and completely envelopes the woman. It includes very vivid descriptions of hallucinations (which they call "illusions," which I like) and delusions, the progression of the condition, the ups and downs, heartbreaks, and final destination.
- This may be the most beautifully woven yarn I've read on the subject. And I've read quite a few.
- Not an easy read, and will bring tears to many, I'm sure: so only read if you feel up to it. But so poignant and powerful it is.
- It might be suitable to send to others who are at the periphery, to give them an idea of what it can be like as a carer, and the horrendous toll it can take. But above all, this is a tale of deep, profound love and Lewy, and it is for that reason it's worth the time to read it.
- Strength to all! Timothy Hudson
Lewy medication news: Quetiapine/Seroquel is a commonly prescribed, non-traditional anti-psychotic drug commonly prescribed to treat psychoses in persons with Lewy Body Dementia, and other conditions.
- A small new research study that compared persons with Parkinson's Disease and LBD showed that 90% of the test group with LBD had partial to complete resolution of psychosis over the duration of quetiapine use, while motor worsening was noted at some point in 27% of participants.
- They concluded that "Long-term quetiapine use was generally well tolerated in this ... DLB population. Mild motor worsening occurred in some patients. No significant difference in long-term efficacy and motor worsening associated with quetiapine treatment was noted between the PD and LBD.
- There's certainly a need for effective treatments, and I hope that new ones come very soon, because although the research shows positive outcomes for most, this is a small sample, and many people living with LBD have few choices, and experience unfortunate outcomes with anti-psychotics of any type currently available.
- Strength to all! Timothy Hudson
COVID has made living with LBD, as a person with the condition, as well as those who care for them, extremely challenging. A long NYTimes article gives some insights, recognizing that…“With dementia, a caregiver is kind of the extension of the mind of the patient. They fill in where the person with dementia can no longer exercise their moral agency and moral experience.”
- The isolation many experience is magnified exponentially, with the intent of health and safety, but at what cost?
- One doctor thinks that blanket bans on dementia caregivers are akin to taking away a wheelchair from a person with physical disabilities. But all of a sudden, the people who would come there and help their minds function were taken away. Some geriatricians describe this separation as unfortunate and damaging, but necessary. Others believe that we should have allowed for a gentler nursing home quarantine, one that recognizes caregivers as “essential” parts of dementia health care.
- “What Covid has laid bare is that in general, for older adults with functional and cognitive impairments, we think it’s OK for them to languish in bed without any stimulation for days,” said Dr. Ariel Green, an assistant professor of medicine at Johns Hopkins University. “In pediatrics, for example, we understand that this is not acceptable.”
- Nice to see my friend Curry Whisenhunt, who is living with LBD, recognized in the article. I appreciate his good works.
- There seem to be so few solutions, simple or otherwise. In the meantime, strength to all! Timothy Hudson
Lewy Science and genetics: An interesting, but technically intense new study from the UK found that the sequences of five genes may help determine whether a person will suffer from Lewy body dementia. It doesn’t get into details of the potential to inherit the condition, although it touches on some rare variants’ inheritability.
A few excerpts follow (and are better than my mis-representing or oversimplifying the research).
- “Lewy body dementia is a devastating brain disorder for which we have no effective treatments. Patients often appear to suffer the worst of both Alzheimer’s and Parkinson’s diseases. Our results support the idea that this may be because Lewy body dementia is caused by a spectrum of problems [with genes] that can be seen in both disorders,” said Sonja Scholz, MD, PhD, an investigator at the NIH’s National Institute of Neurological Disorders and Stroke (NINDS).
- A growing body of evidence suggests genetics may play a role in the disorder and that some cases may be inherited.
- Initially, they found that the sequences of five genes from the Lewy body dementia patients were often different from those of the controls, suggesting that these genes may be important. Some or all of these genes may also have ties to Alzheimer’s and Parkinson’s diseases.
- Further analysis suggested that changes in the activity of these genes may lead to dementia and that the GBA gene may have a particularly strong influence on the disease. The gene encodes instructions for beta-glucosylceramidase, a protein that helps a cell’s recycling system break down sugary fats. The researchers found that both common and rare variants in the GBA gene are tied to Lewy body dementia.
- “These results provide a list of five genes that we strongly suspect play a role in Lewy body dementia,” said co-investigator Bryan J. Traynor, M.D., Ph.D.
- They found that the genetic profiles of the patients [with LBD] in this study had higher chances of [also] suffering from either Alzheimer’s or Parkinson’s disease than the age-matched control subjects.....“Although Alzheimer’s and Parkinson’s disease are molecularly and clinically very different disorders, our results support the idea that the problems that cause those diseases may also happen in Lewy body dementia,” said Scholz.
- Here’s to new knowledge, and, more importantly, prevention and improved 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