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.
LewyBodyDementia.ca15 hours ago
Lewy Science: There has long been a suspected connection between gut bacteria and Parkinson's Disease (PD), which is caused by Lewy Bodies in the brain, but manifests in a somewhat different progression than LBD. The theory is that bugs in the stomach somehow travel to the brain, damage it, and disappear, leaving the damage which doesn't show symptoms for some time, by which time the original infecting agent has long gone.
> In this research with mice, viruses had previously been linked to the development of PD which have travelled from the peripheral nervous system into the Central Nervous System (CNS) and on to higher levels of the neuro-axis. The surviving infected animals displayed changes reminiscent of human PD, long after resolution of the infection, when virus DNA was no longer detectable. This “hit and run” mechanism would be especially challenging to detect. A very interesting premise worthy of more study, but still no cure or prevention method on the near horizon.
> Strength to all! Timothy Hudson.
LewyBodyDementia.ca6 days ago
Writing your will and expressing your final wishes is both critical, urgent, and hard -- from many angles. This is a great, simple start -- and would go a fair way towards at least having an idea of what you'd want, and presents a way that might not be so threatening to start a conversation with your loved one as well.
> From personal experience, once things progress past a certain point, getting a will and POA are no longer possible. So do it now. But if you can't, and I fell into that camp as well, these points can give you some clarity, so that you would have an idea of the most important elements.
> This is for us as carers as well as those we care for. The mortality rate of caregivers is rather worrisome, so do this for yourself, and your loved one. It's doing everyone a favour.
> Strength to all (and with that strength, do a full POA, Will and Living Will if you can -- there may be less time than you think, no matter how busy you are). Timothy Hudson.
LewyBodyDementia.ca1 week ago
Learning the triggers of difficult behaviours and how to react is twice as effective as using antipsychotic drugs.
> Coping with behaviours such as wandering, sleeplessness and anxiety or aggression is super hard. Research shows that antipsychotics are much less effective than non-drug treatments in controlling many challenging symptoms of dementia.
> After examining more than two decades of scientific studies, the treatments that showed the best results were the ones that trained caregivers how to communicate calmly and clearly, and to introduce hobbies or other activities for the patient. Not exactly surprising to me, but a great reinforcement of what should be done as often as possible.
> Caregiver interventions work because they train caregivers to look for the triggers of the symptoms, and when they see the triggers of the symptoms, they will hopefully learn to both avoid those triggers from happening, and know what to do if they cannot be avoided.
> Not at all easy, but the best possible solution. Strength to all! Timothy Hudson.
LewyBodyDementia.ca2 weeks ago
Sit. be quiet. Few know what to say or how to "be present" with one who is profoundly ill or dying. This is a long, thoughtful and valid article that might help some of your "absent" friends understand what might be best, since for many, it is overwhelming and cause people to retreat instead of step up to the situation
> I found this particularly poignant, perhaps more so because I am rather a chatterbox. "There are many beautiful gifts that arise from this prescribed silence. We avoid saying the often thoughtless things that first arise in our minds in times like this. Conversations about ourselves and the external world cannot serve to distract us from the sacred space the bereaved inhabit. And we have the opportunity to wait and see what they would like to say – if they would like to say anything at all."
> it is not a short read, but perfect for a quiet moment. We can always learn. Strength to all. Timothy Hudson.
LewyBodyDementia.ca2 weeks ago
The brains of our loved ones can teach us, even after they’re gone. Brain donation is a powerful legacy to both know what was happening with the condition, which may surprise you, and most importantly, to help ensure that future sufferers will have improved treatment based on invaluable brain research. Since clinical diagnostic accuracy varies from 22% to 86%, post-mortem investigation is the only sure way to know the pathology.
> The Brain Support Network can help you arrange for brain donation — they’re done it already for 400+ families. They work to make things as smooth as possible, working with the Mayo Clinic, UCSF, Columbia U, U of Miami, etc.
> And they have profiles of some of the people who were donors, and it gives perspective on who is afflicted by LBD. A fascinating cross section including a dual-degree-holding author, a paralegal and published writer, art teacher, and air force and 747 pilot.
> If you can, I highly recommend reviewing your options and prepare in advance. The passing of your loved one is always highly emotional, and fraught, so having things in place in advance will make things much easier, and hopefully give you some peace of mind and added confidence that their death will lead to greater understanding by their gift of their brain.
> Strength to all - this is a difficult topic. Timothy Hudson.
LewyBodyDementia.ca2 weeks ago
Visiting a person who is profoundly impacted by dementia is similar to visiting one who is dying. Often people just stop coming. Encourage others never to do so — this is one of the most desperate times, and whatever presence is possible, on terms that will be good for the afflicted person will be transformation.
> Typically great UofMichigan article gives specific tips from a carer whose husband died of LBD, and who has ALS herself, with the intent of leaving this list for people who visit her when she can no longer communicate, so it has additional legitimacy and poignancy. She requests the following for herself:
“ 1. Keep visits short: About 20 to 30 minutes. Being with people is tiring.
2. Visit with a buddy: It’s hard to converse with someone who can’t respond. You two can talk to each other; I can listen.
Speak clearly and not too quickly: My brain has slowed down.
3. Respect my dignity: Don’t speak about me when I appear to be sleeping. Even on one’s death bed, it is said that hearing is one of the last senses to go. Either talk to me as if I could respond or leave the room if you want to discuss my condition.
4. Don’t tell me to “be strong”: I’ve been strong all my life. When I’m at the end, I’m at the end.
5. Don’t try to be strong yourself: If you want to cry or get emotional, it’s all right. It’s an upsetting time.
6. Clean my eyeglasses: vision is profound and dirty glasses are confusing
7. Monitor my comfort: If I’m slumped down in my wheelchair, ask me if I want to be repositioned before you start moving me. I may feel more comfortable in a slumped position than sitting upright.”
8.Play my favorite music: find out what that is before I’m unable to tell you.
> I hope that this would be done for me, if possible. I hope it doesn’t get to that point, but all of those points are ones I followed with my own loved one, long before I read this, and know that they helped. I hope they work for you. 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 May 7, 2017