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
Friday, May 17, 2013
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: LBDtools.com
Bookstore: LBD Book Corner
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: LBDtools.com
Bookstore: LBD Book Corner
Thursday, May 2, 2013
A Caregiver's Guide to Lewy Body is On Sale!
Bulletin:
Last week I announced that finally, A Caregiver's Guide to Lewy Body Dementia was in stock again, after a very long hiatus. This week we have more exciting news.
Amazon is selling it for $13.12. That's lower than we have ever seen it on their site. That price won't last long and so now is the time to buy extra books for gifts or group members. I think the regular price has gone up to almost $14, from the $13.57 it used to be, so again--if you were thinking of getting a book or two, now's the time.
When you buy, please don't forget to enter Amazon through our website. It's easy: go to LBDtools.com, click on the Book Store, then click on whatever book you want to buy. Once you are in Amazon, you can explore all over their site and order just as you always do. We'll get a commission on anything you buy from the time you enter via our site until you leave. We've added a page of supplies and one of activities too, so check them out.
Website: LBDtools.com
Bookstore: LBD Book Corner
Last week I announced that finally, A Caregiver's Guide to Lewy Body Dementia was in stock again, after a very long hiatus. This week we have more exciting news.
Amazon is selling it for $13.12. That's lower than we have ever seen it on their site. That price won't last long and so now is the time to buy extra books for gifts or group members. I think the regular price has gone up to almost $14, from the $13.57 it used to be, so again--if you were thinking of getting a book or two, now's the time.
When you buy, please don't forget to enter Amazon through our website. It's easy: go to LBDtools.com, click on the Book Store, then click on whatever book you want to buy. Once you are in Amazon, you can explore all over their site and order just as you always do. We'll get a commission on anything you buy from the time you enter via our site until you leave. We've added a page of supplies and one of activities too, so check them out.
Website: LBDtools.com
Bookstore: LBD Book Corner
The Value of Music with Dementia
Music wakes up memories and increases alertness, with the effects lasting long after the music is over. It has been used successfully with Parkinson’s to improve motor control, with better results than with physical therapy. Listening to music has helped people who seldom talk to speak up surprising well. Music also fights depression, a common Lewy symptom.
Music, memories and emotion link together in the prefrontal cortex of the brain. Because different dementias affect this area differently, responses to music are different too.
Alzheimers: The prefrontal cortex is one of the last areas to atrophy. Thus, music can serve as a connection between emotion and memories until very late in the dementia journey. Even after the ability to communicate is damaged, people with AD can sing, and even play instruments.
Frontotemporal dementia (FTD): This area of the brain is one of the first hit and so music isn’t nearly has helpful for people with FTD. They no longer have emotions with which to connect the music.
Lewy body dementia: PwLBD never completely lose their ability to feel emotions and like PwAD, appear to be able to experience that feelings/past experiences connection that music provides. Caregivers report that their loved ones will perk up and even sing when they hear a familiar song.
While a professional music therapist can be helpful, a lay person—caregiver, or staff—can also provide music therapy. Consistency is the important factor. Make it a regular part of your loved one’s day. As with everything that helps with dementia, the earlier and the more you include music in their daily life, the better it will work. It will not cure, or even stop dementia. But it can improve awareness at the moment and increase ones quality of life.
Have songfests. Sing together, or if necessary sing to your loved one. Be as diligent about this as you are about physical exercise and good nutrition.
Be patient. Don’t expect improvements immediately. It may take several sessions to see changes.
Play familiar music. Chose music that you know your loved one likes best. Chose a variety, with some slow and some fast (but not so fast that it generates agitation).
Do not use a radio or TV to provide the music. This often becomes "white sound" or background noise that agitates rather than calms.
Do use an iPod or MP3 player with earphones and an individualized playlist. This list will differ with each person and may take a little trial and error before you get it right. Start with the most popular songs in the years when your loved one was between the ages of 7 and 19.
Make music a tool to facilitate the proper mood for an activity. Use soft, relaxing music to counter agitation. Use music with a good rhythm for movement.
You can find books of songs familiar to seniors in the activities section of our bookstore.
website: LBDtools.com
Bookstore: LBD Book Corner, Activities Section
Music, memories and emotion link together in the prefrontal cortex of the brain. Because different dementias affect this area differently, responses to music are different too.
Alzheimers: The prefrontal cortex is one of the last areas to atrophy. Thus, music can serve as a connection between emotion and memories until very late in the dementia journey. Even after the ability to communicate is damaged, people with AD can sing, and even play instruments.
Frontotemporal dementia (FTD): This area of the brain is one of the first hit and so music isn’t nearly has helpful for people with FTD. They no longer have emotions with which to connect the music.
Lewy body dementia: PwLBD never completely lose their ability to feel emotions and like PwAD, appear to be able to experience that feelings/past experiences connection that music provides. Caregivers report that their loved ones will perk up and even sing when they hear a familiar song.
While a professional music therapist can be helpful, a lay person—caregiver, or staff—can also provide music therapy. Consistency is the important factor. Make it a regular part of your loved one’s day. As with everything that helps with dementia, the earlier and the more you include music in their daily life, the better it will work. It will not cure, or even stop dementia. But it can improve awareness at the moment and increase ones quality of life.
Have songfests. Sing together, or if necessary sing to your loved one. Be as diligent about this as you are about physical exercise and good nutrition.
Be patient. Don’t expect improvements immediately. It may take several sessions to see changes.
Play familiar music. Chose music that you know your loved one likes best. Chose a variety, with some slow and some fast (but not so fast that it generates agitation).
Do not use a radio or TV to provide the music. This often becomes "white sound" or background noise that agitates rather than calms.
Do use an iPod or MP3 player with earphones and an individualized playlist. This list will differ with each person and may take a little trial and error before you get it right. Start with the most popular songs in the years when your loved one was between the ages of 7 and 19.
Make music a tool to facilitate the proper mood for an activity. Use soft, relaxing music to counter agitation. Use music with a good rhythm for movement.
You can find books of songs familiar to seniors in the activities section of our bookstore.
website: LBDtools.com
Bookstore: LBD Book Corner, Activities Section
Friday, April 26, 2013
A Caregiver's Guide to Lewy Body Dementia is BACK IN STOCK!
Bulletin:
A Caregiver's Guide to Lewy Body Dementia has been out of stock on Amazon for over a month BUT it is back in stock as of last week.
You can once again buy it. Buy two and then the shipping is free! You can also recommend it to your family and friends and to anyone dealing with this confusing and baffling disorder and know they can get it from Amazon, generally within a few days. Recommend it to any medical personnel you deal with too. It provides good basic information for them, but even more, they need to know about it so they can recommend it to their patients.
Yes, of course we want to sell our book. But it is much more than that. Spreading the word about LBD is our passion. And this book is a great way to do that. This isn't just me talking. It is also the 40 or so five star reviewers on Amazon, the many LBD caregiver group facilitators who recommend it to group members, and the buyers who made this book an Amazon best seller.
This book was one of Amazon's top ten dementia books since it came out in October of 2010 until it was out of stock for so long. Now it is so far down it is often not even one of the top 100. But don't let that fool you. It is still the best all around book about Lewy body dementia for caregivers. Since we wrote it, many other books about LBD have been published and some are very good, but none compete with ours--yet, although some come close.
You can buy A Caregiver's Guide to Lewy Body Dementia and many other good books about LBD or about dealing with dementia in general by going to our LBD Book Corner. We've done the searching and reviewing for you. All of the books I've reviewed in my blog are there if they are sold by Amazon. (At this time only one, Throop's book, published by Cando, isn't.) Do check out our store!
Website: LBDtools.com
Store: LBD Book Corner
A Caregiver's Guide to Lewy Body Dementia has been out of stock on Amazon for over a month BUT it is back in stock as of last week.
You can once again buy it. Buy two and then the shipping is free! You can also recommend it to your family and friends and to anyone dealing with this confusing and baffling disorder and know they can get it from Amazon, generally within a few days. Recommend it to any medical personnel you deal with too. It provides good basic information for them, but even more, they need to know about it so they can recommend it to their patients.
Yes, of course we want to sell our book. But it is much more than that. Spreading the word about LBD is our passion. And this book is a great way to do that. This isn't just me talking. It is also the 40 or so five star reviewers on Amazon, the many LBD caregiver group facilitators who recommend it to group members, and the buyers who made this book an Amazon best seller.
This book was one of Amazon's top ten dementia books since it came out in October of 2010 until it was out of stock for so long. Now it is so far down it is often not even one of the top 100. But don't let that fool you. It is still the best all around book about Lewy body dementia for caregivers. Since we wrote it, many other books about LBD have been published and some are very good, but none compete with ours--yet, although some come close.
You can buy A Caregiver's Guide to Lewy Body Dementia and many other good books about LBD or about dealing with dementia in general by going to our LBD Book Corner. We've done the searching and reviewing for you. All of the books I've reviewed in my blog are there if they are sold by Amazon. (At this time only one, Throop's book, published by Cando, isn't.) Do check out our store!
Website: LBDtools.com
Store: LBD Book Corner
Thursday, April 25, 2013
Books by People with Dementia
Here are some books that show what dementia is like from a very personal view:
Life in the Balance, A Physician’s Memoir of Life, Love and Loss with Parkinson’s Disease and Dementia, by Thomas Graboys and Peter Zheutlin (2008) was one of the first books we read about LBD. It shows the effort a person with even early LBD must make to appear “normal.” Dr. Graboys was a well-known cardiologist and so his book can get somewhat clinical but it is still an easy read.
The next two books are by men who were diagnosed with Early Onset Alzheimer’s Disease (EOAD) in their fifties. However, many of the symptoms they discuss are also common with LBD. (And we know that most dementias aren’t pure—they might have LBD as well!)
Don’t Bury Me, It Ain’t Over Yet by Charles Schneider (March 6, 2006) is well worth reading, if only for his chapter on what’s it like to have dementia. Charlie has been active on the LBDA forums. His book is shorter and less professional than Dr. Graboys’ book, but then Charlie wrote his by himself and Graboys had Zheutlin to help him.
While I Still Can, by Rick Phelps and Gary Joseph Leblanc is written in third person but Leblanc, but it is definitely Rick’s story. Leblanc was a caregiver for his father who had AD and so he adds his own experiences. The back of the book is filled with valuable caregiver suggestions. Rick hosts a Facebook page called Memory People where dementia victims and their caregivers post. I continue to be impressed by the articulate posts by Rick and other people with dementia. Their first hand experiences have helped me understand this disorder better and might help you gain insight into the minds of your loved ones.
And finally, Still Alice (2009) is a novel by Lisa Genova, written from the point of view of a very brilliant woman diagnosed with EOAD at age 50. Although it is written as fiction, it rings true. The author did her research well. And she writes a very good, very interesting story as well. This book has been on the New York Times best seller’s list and won several prizes.
Of course all of these books are available from Amazon via the LBD Book Corner on our website. Thank you for starting your book search there. Amazon pays us a few cents for each book (or anything else, for that matter) you buy. BTW, I recently made a large non-book purchase from Amazon. I spent a lot of time doing some research about which article to buy. I’d gone to Amazon originally via the Book Corner, but the next day, I went back to buy my chosen article, I forgot to do that—just went directly to the item—and we lost the commission! Don’t be like me--please remember to go through our website every time! Thank you for your help.
Website: LBDtools.com Bookstore: LBD Book Corner
Life in the Balance, A Physician’s Memoir of Life, Love and Loss with Parkinson’s Disease and Dementia, by Thomas Graboys and Peter Zheutlin (2008) was one of the first books we read about LBD. It shows the effort a person with even early LBD must make to appear “normal.” Dr. Graboys was a well-known cardiologist and so his book can get somewhat clinical but it is still an easy read.
The next two books are by men who were diagnosed with Early Onset Alzheimer’s Disease (EOAD) in their fifties. However, many of the symptoms they discuss are also common with LBD. (And we know that most dementias aren’t pure—they might have LBD as well!)
Don’t Bury Me, It Ain’t Over Yet by Charles Schneider (March 6, 2006) is well worth reading, if only for his chapter on what’s it like to have dementia. Charlie has been active on the LBDA forums. His book is shorter and less professional than Dr. Graboys’ book, but then Charlie wrote his by himself and Graboys had Zheutlin to help him.
While I Still Can, by Rick Phelps and Gary Joseph Leblanc is written in third person but Leblanc, but it is definitely Rick’s story. Leblanc was a caregiver for his father who had AD and so he adds his own experiences. The back of the book is filled with valuable caregiver suggestions. Rick hosts a Facebook page called Memory People where dementia victims and their caregivers post. I continue to be impressed by the articulate posts by Rick and other people with dementia. Their first hand experiences have helped me understand this disorder better and might help you gain insight into the minds of your loved ones.
And finally, Still Alice (2009) is a novel by Lisa Genova, written from the point of view of a very brilliant woman diagnosed with EOAD at age 50. Although it is written as fiction, it rings true. The author did her research well. And she writes a very good, very interesting story as well. This book has been on the New York Times best seller’s list and won several prizes.
Of course all of these books are available from Amazon via the LBD Book Corner on our website. Thank you for starting your book search there. Amazon pays us a few cents for each book (or anything else, for that matter) you buy. BTW, I recently made a large non-book purchase from Amazon. I spent a lot of time doing some research about which article to buy. I’d gone to Amazon originally via the Book Corner, but the next day, I went back to buy my chosen article, I forgot to do that—just went directly to the item—and we lost the commission! Don’t be like me--please remember to go through our website every time! Thank you for your help.
Website: LBDtools.com Bookstore: LBD Book Corner
Friday, April 19, 2013
Research News about LBD
There have been several recent research projects of interest to anyone dealing with a Lewy body disorder. Perhaps the most exciting is the news about a safer drug for acting-out behaviors. But the others are hopeful too. The APOE gene study and the intestinal studies might help us to identify Lewy body disorders earlier, so that treatment might begin even before symptoms appear. Who knows where brain mapping can take us; it may even help to find a cure! And in the meantime, the STAND test makes an accurate LBD diagnosis easier for even primary physicians. Sadly, none of these projects are available to the general public. But watch for news. Any of them could be within the next year!
Pimavanserin, a new drug. Up to now, most drugs used to manage the hallucinations, and general acting-out of LBD have been too dangerous to use safely with our loved ones. Even those that may seem to work well for many PwLBD, such as Seroquel, come with a serious warning. Pimavanserin treats Parkinson’s disease with psychosis, i.e., the above psychotic symptoms. This oral, once-a-day drug demonstrated significant antipsychotic efficacy with few side effects. It also improved night-time sleep and daytime wakefulness. Clinical trials are done and researchers are waiting for FDA approval. While this research was done with PD patients, the drug should work equally well with DLB, that form of Lewy body dementia which starts prior to motor difficulties.
APOE gene may also predict LBD: A clinical study done by the University of Washington (2012) found that the presence of the APOE gene, until now most closely associated with Alzheimer’s, can also predict pure LBD. Its presence predicts that there is 10 times the risk for AD compared to 13 times the risk for AD plus DLB (10 to 13). Its connection is stronger with pure DLB than with PDD (6 to 3), and there were no statistics for AD plus PD or AD plus PDD, supporting other evidence that fewer people with PDD have coexisting Alzheimers than those with DLB. The good news about this study is that therapies and especially research aimed at AD may also help LBD, since the two disorders may share more of the same root causes than previously thought.
Intestinal Studies: Researchers have found alpha-synuclein, the precursor to Lewy bodies, in the nerves of gut tissue of people who up to 5 years later, developed PD, but none, or very little in people who were healthy or had other gut disorders. This could mean that PD and other Lewy body disorders could be predicted years prior to the appearance symptoms due to Lewy bodies in the brain. Building on this research, other researchers are exploring the idea that a toxin leaks out of the intestine, carrying with it some damaged alpha-synuclein which eventually travels to the brain and becomes Lewy bodies. If this is true, researchers may be much closer to finding a way to stop Lewy body disorders before they start.
Brain Mapping: President Obama is advocating that we spend $100 million dollars on a brain mapping project and inviting other organizations and companies to invest as well. At present, we can study large populations of brain cells. Brain mapping will be a study of the brain, right down to the individual cell and cell connections. Just as gene mapping has greatly helped medical science, brain mapping will provide information that will generate treatment ideas for numerous neurological disorders, including LBD.
STructural Abnormality iNDex test (STAND) test: Briefly, this is a MRI scan that allows a physician with little LBD experience to make as accurate a diagnosis as a LBD specialist. As yet, the STAND test is only accessible in large teaching and research centers. However, doesn’t the idea that eventually, a primary physician could order this scan and then do a good job of diagnosing LB disorders sound wonderful?
Website: LBDtools.com
Pimavanserin, a new drug. Up to now, most drugs used to manage the hallucinations, and general acting-out of LBD have been too dangerous to use safely with our loved ones. Even those that may seem to work well for many PwLBD, such as Seroquel, come with a serious warning. Pimavanserin treats Parkinson’s disease with psychosis, i.e., the above psychotic symptoms. This oral, once-a-day drug demonstrated significant antipsychotic efficacy with few side effects. It also improved night-time sleep and daytime wakefulness. Clinical trials are done and researchers are waiting for FDA approval. While this research was done with PD patients, the drug should work equally well with DLB, that form of Lewy body dementia which starts prior to motor difficulties.
APOE gene may also predict LBD: A clinical study done by the University of Washington (2012) found that the presence of the APOE gene, until now most closely associated with Alzheimer’s, can also predict pure LBD. Its presence predicts that there is 10 times the risk for AD compared to 13 times the risk for AD plus DLB (10 to 13). Its connection is stronger with pure DLB than with PDD (6 to 3), and there were no statistics for AD plus PD or AD plus PDD, supporting other evidence that fewer people with PDD have coexisting Alzheimers than those with DLB. The good news about this study is that therapies and especially research aimed at AD may also help LBD, since the two disorders may share more of the same root causes than previously thought.
Intestinal Studies: Researchers have found alpha-synuclein, the precursor to Lewy bodies, in the nerves of gut tissue of people who up to 5 years later, developed PD, but none, or very little in people who were healthy or had other gut disorders. This could mean that PD and other Lewy body disorders could be predicted years prior to the appearance symptoms due to Lewy bodies in the brain. Building on this research, other researchers are exploring the idea that a toxin leaks out of the intestine, carrying with it some damaged alpha-synuclein which eventually travels to the brain and becomes Lewy bodies. If this is true, researchers may be much closer to finding a way to stop Lewy body disorders before they start.
Brain Mapping: President Obama is advocating that we spend $100 million dollars on a brain mapping project and inviting other organizations and companies to invest as well. At present, we can study large populations of brain cells. Brain mapping will be a study of the brain, right down to the individual cell and cell connections. Just as gene mapping has greatly helped medical science, brain mapping will provide information that will generate treatment ideas for numerous neurological disorders, including LBD.
STructural Abnormality iNDex test (STAND) test: Briefly, this is a MRI scan that allows a physician with little LBD experience to make as accurate a diagnosis as a LBD specialist. As yet, the STAND test is only accessible in large teaching and research centers. However, doesn’t the idea that eventually, a primary physician could order this scan and then do a good job of diagnosing LB disorders sound wonderful?
Website: LBDtools.com
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