Today is our 11th Anniversary. Although neither of us, nor any of our loved ones presently have LBD, it has always played a big part in our relationship, right from the first. Jim is a quiet man, unless he’s talking about a subject he’s passionate about. I got him talking by asking him about his license plate: LBDA.ORG. He told me about how his wife had died with LBD. He told me about the problems trials he’d had getting the right care for her. And he proudly told me about how he and four other caregivers had started the Lewy Body Dementia Association. After we married, I told him that although I’d support him in his mission, it wasn’t MY mission. But then, I made the mistake of commenting about how the LBDA was not doing well with volunteers—and became their volunteer coordinator. Jim’s mission became mine, and has been ever since.
In our eleven years of marriage, we’ve traveled a lot. From the first, we lived in Arizona and traveled every year to Washington state. At first, Jim also traveled to Georgia for LBDA board meetings. When, in 2009, he completed his six year term on the board, we were already going in a different, but compatible direction, teaching about LBD as we traveled, and at home. Over the years, we’ve attended many conferences and participated in several. We’ve also attended uncountable caregiver and Parkinson’s support groups. This year, we plan to attend the World Parkinson’s Congress in Portland Oregon. We find these events extremely important because that’s what keeps us in contact with people who are living with LBD and Parkinson’s. Your experiences are what drive our work. We take what we hear you talking about, do some research and present the results with our own slant.
Along the way, we’ve co-authored three books. The first one, Riding a Roller Coaster with Lewy Body Dementia was initially directed towards staff. When we tried to get it published commercially, editors were interested but told us, “Staff don’t buy these books. Family caregivers do.” The editors were right, and our next book was directed towards family caregivers. We are honored to say that A Caregiver’s Guide to Lewy Body Dementia is now a staple in every LBD caregiver’s library. But we had more to say and so last year, we published Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia. It focuses on those symptoms where Parkinson’s transitions into Lewy body dementia and on ways to deal with these with fewer drugs. We also re-published the Roller Coaster book because many family caregivers want something to give to the people who care for their loved ones. You can now buy the set of three, the “Trio” on our website at a discounted price.
I was a writer before Jim and I ever met. My first book, Betsy, is an historical romance novel based in Missouri in 1850. The heroine is my grandfather’s step-mother, who was only four years older than him. If I ever stop writing about LBD long enough, I have a sequel half-written that will actually be about my grandparents.
Then, in 2013, I wrote On the Road with the Whitworths, a memoir of our first year of traveling in an RV and the start of our teaching about LBD. Unlike the books about LBD, this book is fun to read. Especially if you are dealing with this baffling disorder, reading about it can be difficult. We recommend that you only read a few pages of our LBD books at a time and digest that before you go on. Even take a break and read something lighter. Reading this book provides a good break. It keeps everything light and is designed to make you laugh.
Since 2011, I’ve been writing this weekly blog. It has actually provided a lot of the content for our second LBD book. We now have another LBD book in the works and hope to have it published by this time next year.
For information about Lewy body disorders, read our books:
For 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
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.
Showing posts with label history. Show all posts
Showing posts with label history. Show all posts
Friday, August 12, 2016
Friday, May 17, 2013
A Lewy Body Family History
It all started back in 1817 when Dr. Parkinson described “shaking palsy.” Eventually, the disease was named after him. Fast forward almost a hundred years: In 1912, Dr. Lewy was searching for the cause of PD in the autopsied brains of Parkinson’s patients. He found that the microscopic round bodies of protein that were eventually named for him were always present in the area of the brain where movement is controlled. Thus, since 1912, it has been known that Lewy bodies and Parkinson’s occur together, although, until the last decade, they weren’t sure which caused which.
Fast forward again, to the 1980’s. Dr. Kosaka found these same Lewy bodies in the cerebral cortex, or the thinking center, of the brains of people who had displayed the symptoms we now relate with Lewy body dementia.
However, even though researchers knew the same “Lewy bodies” were present in both Parkinson’s and in that dementia Dr. Kosaka had found, dementia was not considered a symptom of PD until the early 1990’s. They were thought to be two separate diseases that often occurred together: PD and ‘dementia,’ usually Alzheimer’s. Then, in 1994, Parkinson’s disease with dementia (PDD) was recognized as part of the Parkinson’s picture and given its own insurance code.
Two years later, in 1996, a world-wide group of dementia specialists convened and developed clinical criteria for Dementia with Lewy Bodies (DLB). At that time, the terms ‘dementia with Lewy bodies’ and ‘Lewy body dementia’ were used synonymously. However, it was not yet associated, at least formally, with PD. Dementia specialists treated LBD and movement specialists treated PDD, as a symptom which could occasionally show up in late stage PD.
By the early 2000’s specialists were beginning to recognize the similarities between PDD and LBD/DLB. Finally, in 2005, a group of movement and dementia specialists met together and agreed that Lewy bodies caused both types of dementia and that their cognitive symptoms were similar. At that time, they determined that ‘DLB’ described the type of dementia that started prior to any motor symptoms and that ‘LBD’ was an umbrella term for both ‘DLB’ and ‘PDD’.
Notice that the experts were now saying that Lewy bodies caused these disorders (and PD as well)--not the other way around. And that’s why we now say that the Lewy body family has at least three members: PD, DLB and PDD. They are all related. PD occurs when the Lewy bodies reside in the midbrain where motor functions are controlled. DLB occurs when Lewy bodies reside in the cerebral cortex where cognitive abilities are controlled. And PDD occurs when the Lewy Bodies migrate from the midbrain to the cortex and both motor and cognitive functions are compromised.
As to what causes the damage that results in Lewy bodies, that’s still up for grabs. However, the evidence is becoming stronger and stronger that it is a combination of genetics and toxins.
Next week’s blog presents a more scientific vies of the Lewy body family.
Lbdtools.com
Fast forward again, to the 1980’s. Dr. Kosaka found these same Lewy bodies in the cerebral cortex, or the thinking center, of the brains of people who had displayed the symptoms we now relate with Lewy body dementia.
However, even though researchers knew the same “Lewy bodies” were present in both Parkinson’s and in that dementia Dr. Kosaka had found, dementia was not considered a symptom of PD until the early 1990’s. They were thought to be two separate diseases that often occurred together: PD and ‘dementia,’ usually Alzheimer’s. Then, in 1994, Parkinson’s disease with dementia (PDD) was recognized as part of the Parkinson’s picture and given its own insurance code.
Two years later, in 1996, a world-wide group of dementia specialists convened and developed clinical criteria for Dementia with Lewy Bodies (DLB). At that time, the terms ‘dementia with Lewy bodies’ and ‘Lewy body dementia’ were used synonymously. However, it was not yet associated, at least formally, with PD. Dementia specialists treated LBD and movement specialists treated PDD, as a symptom which could occasionally show up in late stage PD.
By the early 2000’s specialists were beginning to recognize the similarities between PDD and LBD/DLB. Finally, in 2005, a group of movement and dementia specialists met together and agreed that Lewy bodies caused both types of dementia and that their cognitive symptoms were similar. At that time, they determined that ‘DLB’ described the type of dementia that started prior to any motor symptoms and that ‘LBD’ was an umbrella term for both ‘DLB’ and ‘PDD’.
Notice that the experts were now saying that Lewy bodies caused these disorders (and PD as well)--not the other way around. And that’s why we now say that the Lewy body family has at least three members: PD, DLB and PDD. They are all related. PD occurs when the Lewy bodies reside in the midbrain where motor functions are controlled. DLB occurs when Lewy bodies reside in the cerebral cortex where cognitive abilities are controlled. And PDD occurs when the Lewy Bodies migrate from the midbrain to the cortex and both motor and cognitive functions are compromised.
As to what causes the damage that results in Lewy bodies, that’s still up for grabs. However, the evidence is becoming stronger and stronger that it is a combination of genetics and toxins.
Next week’s blog presents a more scientific vies of the Lewy body family.
Lbdtools.com
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