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 LewyBodyDementia.ca 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.


LewyBodyDementia.ca
LewyBodyDementia.ca
A specific test for LBD? Not exactly.
A skin biopsy test to diagnose neuro-degenerative disorders seems to be a great leap forward. However, it's worth keeping in mind that this test only confirms (with high accuracy) the presence of the protein alpha-synuclein. It does NOT differentiate between the five conditions associated with this abnormal protein. A clinician needs to analyze which one, or ones, are involved, based on clinical information, that include:
- Parkinson’s disease (idiopathic PD, typical PD)
- Dementia with Lewy bodies (DLB/LBD/Lewy Body Dementia)
- Multiple system atrophy (MSA)
- REM sleep behavior disorder – oft considered a prodromal symptom of the above
- Pure autonomic failure

The big plus to me is that the test should be able to specifically identify synucleinopathy is involved, instead of a too-broad suggestion of "a dementia," or mild cognitive impairment, and should help provide more targeted treatments, and avoid ones that could have catastrophic outcomes.
- Strength and courage to all. Timothy Hudson
LewyBodyDementia.ca
LewyBodyDementia.ca
Dementia will impact 3x as many by 2050 as it does today. That's , 150+ million people, mostly women, with disproportionate increases in the developing world.
- Improvements need to go far beyond recent ones in the rich world, where " in North America and Europe, the incidence of dementia—that is, the percentage of people of any given age with the condition—has fallen noticeably, perhaps because of better access to and quality of education and improved cardiovascular health.... However, increases in obesity, smoking and high blood pressure in some countries will more than offset that...."
- How to fund education, awareness, prevention/delay, and -- most importantly -- care. A big question that's becoming the real "elephant in the room."
- Strength and courage to all! Timothy Hudson
LewyBodyDementia.ca
LewyBodyDementia.ca
Loss or lessening sensations, sight, sound, smell, touch should all be taken seriously, assessed and treated actively. Loss of smell is frequently seen years before an LBD diagnosis, for example, and is now considered a "prodromal" symptom.
- Hearing and vision, for everyone -- especially for carers -- needs to be attended to. As the article states, the "Lancet Commission on Dementia ranking hearing loss as the single largest potentially modifiable risk factor for dementia." That makes it so much more critical to get your hearing treated.
- Loss of clarity of vision also leads to very bad outcomes.
- An interesting, broad ranging article worth reading. And even more worth protecting your hearing and sight, and getting them treated if there's problems. Strength to all! Timothy Hudson
LewyBodyDementia.ca
LewyBodyDementia.ca
Lewy Science: Although this is still VERY preliminary, there continues to be work towards a vaccine that will hopefully be effective against the aggregation of alpha-synuclein proteins, which are thought to be the cause of Lewy Body Dementia.
- Keep in mind this is a press release, and as such, can often give the impression that things are much further along than might be reasonable to assume.
- Regardless, the researchers seem to have had success in diminishing the clumping of three types of the offending protein -- in mice -- but are nowhere near ready to roll this out broadly.
- Anything towards a potential treatment is welcome! It can't come soon enough.
- Strength and courage to all. Timothy Hudson
LewyBodyDementia.ca
LewyBodyDementia.ca
The Cleveland Clinic continues to actively research Lewy Body Dementia. This is a good intro article to the condition, as well as having some very interesting perspectives from Dr. James Leverenz. One was him saying how prevalant the condition is in men, versus women, “So much so that when I see a woman come to me with the diagnosis I always wonder,” he said.
- While three quarters of Lewy body dementia patients are men, in Alzheimer’s disease, approximately two thirds of them are women.
- One of their goals is to diagnose the condition before symptoms appear, partly to ensure proper medications are used, but also to ensure, perhaps more importantly, that incorrect medications are definitively avoided.
- Here's to tangible results! Strength to all. Timothy Hudson
LewyBodyDementia.ca
LewyBodyDementia.ca
Excessive Daytime Sleepiness (EDS) is very, very common with LBD. In addition to REM Sleep Behaviour Disorder, my mother experienced what I considered to be Narcolepsy, or something akin, as well (would fall asleep instantly, and would be unable to be awakened). In addition, her numerous falls may have had connected in some way with Cataplexy (losing control of all muscles, but remaining conscious), although both of those conditions are conjectural on my part.
- This is a very interesting development that I've never seen connected with LBD, but warrants consideration.
- The researcher found that a neurotransmitter, Orexin was absent in people with Narcolepsy and Cataplexy. This neurotransmitter seems to be absent because it's attacked by the person's own immune system, comparing "the biology of narcolepsy to that of Type I diabetes, in which the body’s immune system destroys insulin-producing cells." Wow!
- Genetic factors that underlie human narcolepsy and the autoimmune processes can be triggered by certain influenza strains, that lead to orexin deficiency, and there are investigations into now underway into the role of autoimmunity in other neurodegenerative disorders, such as Alzheimer’s and Parkinson’s diseases.
- I'd definitely like to see more on this, and whether any potential for treatment of this condition could be applied in some cases to individuals with LBD. Thanks to Narcolepsy Ireland for the link.
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