The Whitworths of Arizona, bringing science to you in everyday language.

Friday, May 10, 2013

Blogs and FaceBook Pages about LBD

When I first met Jim and became involved with the LBDA in 2005, it was the only game around. No books, no blogs, no other websites about LBD. Well, there was one book: Dementia with Lewy Bodies, edited by John O’Brian, David Ames and Ian McKeith came out that year.  It was written by the best experts in the field and is still probably one of the best books for professionals. But with its clinical language and high price ($130), it isn’t a book for caregivers. The only reason we have one is because every 2005 LBDA Board member received one a gift. Jim was President that year and he still prizes this book. However, a lot has happened in the nearly a decade since that book was written. It is no longer current although the information in the book is still accurate—it’s just that researchers have found out so much more.

Now there are many books for LBD caregivers. I named several in a couple of recent blogs. In this blog I’d like to list some other resources. All of the following blogs are in the blog list on the right of this page. Do check them out.

3 Years and 13 Dumpsters is hosted by Joy Walker. You may recognize the name. She wrote a book with the same title. Joy is a surviving LBD caregiver, who kept on giving even after her father passed. Now she is a LBDA Support Group facilitator and Helpline responder. Her latest blog was about hospice, and well worth the read.

Sharing my life with Lewy Body Dementia is hosted by a man who calls himself Silverfox. He and his wife also write several other blogs. Silverfox has LBD and he posts about his experiences with it. Caregivers hear a lot about what other caregivers think, but it isn’t often you find an articulate person with LBD who is willing to share his/her thoughts with us. I wish he added more feelings, but after all, he is a man....Even so, his stories may help you understand your loved ones better.  His blog received a Healthline Best of the Web award.

Living with a Thief named Lewy Body Dementia is another winner of a Healthline Best of the Web award. This is hosted by Kathy Lowrey, whose husband of 31 years was diagnosed with LBD in 2007 and is still living at home. Her experiences will resonate with your own!

Living Well with Lewy Body Dementia is hosted by UK blogger Ken Clasper, who was diagnosed with Early Onset Lewy Body Dementia. Ken’s writing is more political than personal, but nevertheless, interesting. One of his latest blog was about “assistive technology,” specifically GPS tags for people with dementia. His take is that if it helps, and cuts costs as well, do it and quit worrying about “civil liberties,” which he says, he lost when he was diagnosed with LBD.

The new trend seems to be Facebook pages that act as a forum. Here are a couple:

Dementia: The Journey Ahead is hosted by Susan Scarff, author of a book by the same title. This is another book I reviewed recently and the blog is every bit as good. Lots of good suggestions for websites and some good discussions as well.

Memory People  is hosted by Rick Phelps, who has Early Onset Alzheimer’s Disease (EOAD) but people with all kinds of dementia, including LBD, post. This is another place I go to when I want to know the patient’s view. Patients and caregivers both post which provides a well-rounded view of the issue discussed. This is a closed site so as to maintain privacy. From your FB home page, type “Memory People” into the search bar.  Then click on Memory People, and follow the instructions.

Our website:
Bookstore: LBD Book Corner


  1. There is also Treasures in the Darkness, an online blog on Facebook by Pat Snyder, author of the book by that name.

    I have also found that the posts at Forget Me Not - Lewy Body Dementia forum by three men with LBD/dementia who have such positive outlooks (David Kramer, Norm Mac, and Harry Urban) provide so much insight from the perspectives of people who have LBD.