Get Your Free E-Book!

We are doing it again! We are giving away digital copies of Responsive Dementia Care: Fewer Behaviors Fewer Drugs. The promotion starts Thursday at 12:01 am December 5 and ends on Monday, December 9 at noon.Just go to Amazon and "buy" the book for free anytime during the promotion. All we ask is that you read it and write a review. (BTW, in this time of phishing and scams, know that Amazon does not give us your name when you get this book. It really is free! We give it away so more people will read it, like it, tell others about it and perhaps even buy a paperback copy they can mark up.)

Pat Snyder, author of Treasures in the Darkness and a LBDA Lewy Buddy calls this her favorite of the Whitworth books and says it addresses the most frustrating part of LBD symptoms in a clear-cut practical way. Rosemary Dawson, the administrator of Caring Spouses and long term LBD advocate, says that this book provides care partners with the knowledge to implement non-drug approaches in a comprehensive yet clear way.

To repeat: From 12/5/2019 to noon on 12/9, you can go to Amazon and "buy" Responsive Dementia Care: Fewer Behaviors Fewer Drugs for free. Please do read the book and give us an Amazon review!

BTW, while you are on Amazon, check out our newest book, Lewy Body Dementia Manual for Staff. This is an up-to-date revision of our old Riding a Roller Coaster with Lewy Body Dementia. This book is a great gift for your caregiver or helper or for the care facility where your loved one lives. Click here to get it for even less when bundled with our other books.

Finally, while we are in sales mode, don't forget that we self publish most of our books. This means we can sell them in bulk for much less than full price. We can also customize them for facilities and groups. If you would be interested in this, see our 11/22 blog.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Kirk Hall

In March we spoke at a Parkinson’s conference in Colorado where we met several fascinating people. One of the most interesting was Kirk Hall. Kirk is a man who has refused to let Parkinson's, and now MCI, stop him from enjoying life and continuing to be productive.  He is also the author of two children’s books about Parkinson’s, both of which are listed in our website’s book store, The LBD Book Corner. He just sent us a new book release for his latest book, Window of Opportunity. In this book, Kirk offers all of us an insider’s view of how it feels to get such a life changing diagnosis as MCI and continue to live a fulfilling life. His books, first for children and now for adults, are examples of this. Another is his participation in a webinar sponsored by the LBDA in June. Kirk has asked that we post information about the book and the webinar and we are honored to oblige.

Dementia Webinar

A webinar to be hosted by the Lewy Body Dementia Association (LB DA) is planned for Wednesday, June 4, 2014 at 2 pm Eastern on Webex. The goal of the webinar is to give Lewy body dementia (LBD) patients, Parkinson's patients (PWPs) and their caregivers the opportunity to hear from Alexander Dreier, who has been diagnosed with LBD, and his wife, Olivia, about what is like for them and how they deal with this diagnosis. Kirk and Linda Hall will also participate as representatives of the "PD world" and share how they are dealing with Kirk’s mild cognitive impairment (MCI) diagnosis, as MCI is often a precursor to Lewy body dementia (LBD), the most common form of Parkinson’s dementia. There will be an opportunity to ask questions.

Registration and access information for this webinar will be available on the LBDA website  in May.

NEW BOOK RELEASE

Window of Opportunity is the story of one person’s journey through the initial signs of cognitive impairment associated with Parkinson’s disease and the uncertainty of a future that includes a significant probability of dementia. Kirk Hall, only 58 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor. He describes the long and challenging visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the nature and progression of his disease. His journal notes allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties. He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia. It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how dealing with the potential for a terminal diagnosis can turn into a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on a similar path.

To order: Find the paperback and Kindle versions of this book in The LBD Book Corner. You can also order the paperback from Pygmy Books, page 2 and the ebook (all formats) from Smashwords.

Caregiver’s Guide for Only $3.99—And Writing Reviews

It’s true. Amazon is selling the Kindle version of A Caregiver’s Guide to Lewy Body Dementia for only $3.99. Amazon plays with their prices a lot. Although until now, the Kindle version has remained at $9.99, the paperback version has gone from a high of $13.98 to a low of $13.23, but so far, the price has always returned eventually to its norm of $13.57. And so, I don’t know how long this especially low Kindle price will last—maybe a day or a week, or maybe it is even the new base amount. Buy one for yourself or buy some as gifts for family and friends. Also, if your loved one is in a residential facility or if you have a home health aide, this is a great but inexpensive way to share information about LBD.

We’ve added the Kindle version of our book to our LBD BookCorner Store to make it easy for you to buy. Just click here. While you are there, take the time to check out the other LBD related books that we’ve gathered together for you. If there’s a book you’ve been wanting to buy but haven’t yet, check the price again. Remember, Amazon plays with their prices and you just might find a bargain!

And while I’m talking about books, do you write reviews for the ones you read? Please do. You don’t even have to have bought the book on Amazon, although they do show if you did or not. As a buyer, not only of books but of other items as well, I’ve come to depend on consumer reviews and read them carefully before I make a purchase.

They really do help a person chose the right book and all it takes is a little thought and time. Think about what you liked/disliked over all and then add some specifics—I especially liked/disliked the way the author talked about….”.  If you are still unsure what to write, read some other reviews to get an idea of what people write.

As authors, we value every review. What we learn about your likes and dislikes has an effect on everything we write. Thank you to everyone who reviewed our book, and to those who reviewed other books as well. When choosing books for the LBD Book Corner, we always take your reviews into consideration..

And finally, if you know of a book or activity you like and we don't show it, do let me know! Happy reading and gifting.

On the Road for LBD

We are getting ready to leave our (VERY) sunny state of Arizona and head north to Washington. On July 25^th, we have the honor of sharing the stage at an event in Seattle with Dr. James Leverenz, the Chair of the LBDA’s Scientific Advisory Board and a leader in the dementia field. If you are also in the area, do show up and let us know you read our blog! (Details) This summer we will also be in California, Oregon and other parts of Washington if you know of any group that would like to have us speak.

We’ve started reading as we travel—Jim drives; I read out loud. So far we’ve read Treasures in the Darkness by Pat Snyder, Going Mad by Carol Pendergrass and are in the middle of Thirteen Years and Thirteen Dumpsters by Joy Walker. All are good reading and all have value for the LBD caregiver. Treasures has some great suggestions for preparing for that long journey—like house renovations so that you can keep your loved one home longer and reducing stress. Going Mad reminds us that getting the legal work done early on is a necessity—if you don’t, someone one else may! And Thirteen Dumpsters, which tells the story from an adult child’s view, encouraged me to view my own clutter with a more discerning eye—what can I do to make the inevitable clean up job, both physical and emotional, easier for my children?

Another book just out is Relentless Goodbye, by LBDA blogger Ginny Burkholder, is the story of her journey with her husband, Nelson. We met the Burkholders in 2005—a lovely, interesting couple. I’m sure Ginny’s book will be every bit as interesting. We don’t have Ginny's book in our LBD Book Corner yet, but you can still buy it through our website by clicking on the Amazon search box at the top of the page.

Where's the Rage?

“Where’s the rage? Why is the medical community so unaware aware all of those LBD drug issues? Why do I have to be the one who stands against the system and demand the care my wife needs? What happens to those who don’t have someone as assertive—and knowledgeable—as I am to stand up for them? Why don’t the professionals KNOW? They are supposed to be the ones with the training.”

Bill came up to me after our presentation, asking these questions—obviously feeling the rage himself and wanting to know why it wasn’t endemic. Actually, medical personnel ARE better trained than they were ten years ago. In 2002, most primary physicians had not even heard of LBD. Now they usually know about it although they may not be able to identify it or may still believe that since “all dementias are treated alike”, it is not necessary to know just what kind you have.

Spreading the word about any new disease is a long, painful process. I read somewhere that it takes 20 years for a disease to become known to the general public—and, I suspect, to be more than mentioned off-handedly in medical schools. LBD was only identified as a disease in 1996. That means it still has at least four years of relative invisibility. Often more.

I mentioned this to Bill. “But Lewy bodies have been known for many years,” he returned. Yes, since 1912, but then, only as something that was present with Parkinson’s disease. Japan’s Dr. Kosaka finally connected Lewy bodies with dementia in the mid 1980’s. But it was considered no more than a “rare disorder” until a group of specialists got together and agreed upon a set of diagnostic criteria in 1996.

In 2003, LBD awareness got another big boost. Jim Whitworth and four other caregivers founded the Lewy Body Dementia Assn. They felt Bill’s rage and wanted what he wanted—more awareness about LBD in the medical community and more support for LBD caregivers. The LBDA is almost nine years old now and it has become a strong national organization. Its efforts to advocate for awareness and caregiver support have had results, albeit, not always for the individual caregiver to see. 

In 2005, dementia and movement specialists agreed that dementia with Lewy bodies (DLB), which starts with dementia, and Parkinson’s disease with dementia (PDD) were closely related, with similar causes and cognitive symptoms. Lewy body dementia became an umbrella term for both. Until then, half of our LBD loved ones were not recognized as having those same drug issues. Research shows that drug sensitivities actually do get worse for the PD patient when dementia appears. Another step forward.

In 2008, our first book, Riding a Rollercoaster with Lewy Body Dementia came out, the first comprehensive, easy-to-read book about LBD. In it, caregivers often found the help they needed to take their concerns to the medical community. In 2010 A Caregiver's Guide to Lewy Body Dementia replaced this book.  We are honored to have this place in the history of LBD. We continue to teach, and, like Bill, our focus is on the medical community--especially the hands-on caregivers, the ones who care for our loved ones when we no longer can. If you want your caregivers to be more Lewy-savvy, refer their supervisors to us--we'd love to provide them with some training!  

Some of the latest advances have been in the area of earlier diagnosis. As of 2009, Mild Cognitive Impairment (MCI) has been divided into two types, amnesiac and non-amnesiac. The latter includes less—or no—memory loss along with the decline of executive functions (planning, organizing, etc.). However, it still doesn’t include impairment of social functions, i.e., the problems that delusions bring very early in the LBD journey. We still have a ways to go with this!

Most recently, in 2011, LBD became one of the 100+ Compassionate Allowance diseases, cutting application time for SSA claims down to as little as a few weeks—instead of the months, or even years that it was previously. This doesn’t change the medical community’s awareness of LBD’s problems, but it sure does help caregivers who are running out of funds.

Yes, Bill, things are changing. More people, more medical personnel, even primary physicians, are becoming aware of LBD, even if they still don’t really know how to identify it—or treat it. And yes, the progress is awfully slow—much slower than we’d like. We’ll have to keep on doing our own research and being strong advocates for our loved ones for a while yet. 

Finding Good Books about Lewy Body Dementia

Amazon sells many books about dementia and caregiving. But which ones are the best for the LBD caregiver? Our new website store, the LBD Book Corner, showcases just such books. Naturally, it starts out with our own Caregiver’s Guide to Lewy Body Dementia. Although this is still the only layman’s resource book specific to this disorder, there some great personal stories about living with LBD available now and you can find them in our store. We’ve also added some excellent books about caregiving in general and some about communicating with people who have dementia and dealing with acting out. All of the books in our store have at least four star reviews—usually five. Once you click on a book and go to Amazon, do check out its reviews. They tell you a lot about what the book is like.

When you go to Amazon via the LBD Book Corner and buy anything, they pay us a small commission. In this easy way, you can help us spread awareness about Lewy body dementia. Every cent goes into our working fund. Right now we are updating our “do-it-yourself” LBD training program for facilities, working on a video, maintaining this blog, writing a new book and planning our summer tour. Pretty good for a couple of “old retired folks,” huh?

And so, let’s help each other out. We’ll help you find the best LBD books and you help us spread the word. Just remember to go to Amazon.com via our website. It’s amazing what they sell, by the way-- books, appliances, clothes and on and on. And tell your family, neighbors and friends too. Thanks for the help! 

Find the LBD Book Corner at LBD tools.com. Just click on the Store tab at the top or bottom of the page--or follow any of the above links directly to the store.