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
Friday, April 26, 2013
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
Friday, April 12, 2013
A Lewy-Friendly Home, Part 2
Last week, I talked about remodeling your home to make it Lewy-friendly. That can be costly even though you save in the long run by being able to keep your loved one home longer. However, you don’t have to spend a lot of money to do many things to make your present home more Lewy-friendly—and safe.
Make walking paths that are wide, straight, direct and as free from furniture as possible.
Simplify, and remove unnecessary clutter. If you don’t need a piece of furniture or an item in a room remove it. This is both a focus issue and a safety issue. The more open space in a room, the less confusing it will be and the easier it will be to navigate without falling.
Remove area rugs. Rugs may soften a fall, but they can also cause them when a person with feet that may not work really well trip over a rumpled edge.
Pad sharp corners and edges. Swimming noodles cut in half work well for this.
Consider padding your bedroom floor. A couple of issues make falls in bedrooms especially common. One is the presence of Active Dreams, where a person may be so active in their dreams that they fall out of bed. The other is Orthostatic hypotension (OH) or low blood pressure on rising. The large foam interlocking squares sometimes used for garage floors work well. They are firm enough for easy walking yet provide some padding for falls. Try just a small area first, to see how your loved one manages.
Have lockable danger areas, with alarms if possible. Use keyed locks, not deadbolts, which can be much too easy to operate on outside doors, the garage, or anyplace with access to dangerous equipment.
Lower the hot water temperature to no more than 110 degrees, to avoid burns. Most dishwashers have an internal hot water heater and most laundry detergents now do a fine job with cold or warm water. Therefore, a hotter temperature isn't needed.
Use good (soft, non-glare) lighting. This reduces the dark areas and shadows that can cause confusion. You want to be able to see well enough to avoid falls and bumping into the furniture.
Install a “baby” monitor. This allows you to see what your loved one is doing when you are out of the room. However, it may not not help when you aren't watching, as when you are asleep--there's no alarm.
Use pressure monitors. These have an alarm will alert you if your loved one gets up from bed or chair. You can get the kind that sounds in the same room, alerting your loved one too. If that would only confuse them or if you wouldn’t hear it there, you can get monitors with alarms that sound where you are.
Place foam swimming noodles near the edge of the bed, under the bottom sheet. This may keep your loved one from getting out of bed at night without your help.
Use a baby gate to block off stairs. Also, if you are already using a hospital bed with rails, put a baby gate at the end to stop your loved one from crawling out that way.
You can find the mats and monitors in the Supplies section of the LBD Book Corner on LBDtools.com.
Make walking paths that are wide, straight, direct and as free from furniture as possible.
Simplify, and remove unnecessary clutter. If you don’t need a piece of furniture or an item in a room remove it. This is both a focus issue and a safety issue. The more open space in a room, the less confusing it will be and the easier it will be to navigate without falling.
Remove area rugs. Rugs may soften a fall, but they can also cause them when a person with feet that may not work really well trip over a rumpled edge.
Pad sharp corners and edges. Swimming noodles cut in half work well for this.
Consider padding your bedroom floor. A couple of issues make falls in bedrooms especially common. One is the presence of Active Dreams, where a person may be so active in their dreams that they fall out of bed. The other is Orthostatic hypotension (OH) or low blood pressure on rising. The large foam interlocking squares sometimes used for garage floors work well. They are firm enough for easy walking yet provide some padding for falls. Try just a small area first, to see how your loved one manages.
Have lockable danger areas, with alarms if possible. Use keyed locks, not deadbolts, which can be much too easy to operate on outside doors, the garage, or anyplace with access to dangerous equipment.
Lower the hot water temperature to no more than 110 degrees, to avoid burns. Most dishwashers have an internal hot water heater and most laundry detergents now do a fine job with cold or warm water. Therefore, a hotter temperature isn't needed.
Use good (soft, non-glare) lighting. This reduces the dark areas and shadows that can cause confusion. You want to be able to see well enough to avoid falls and bumping into the furniture.
Install a “baby” monitor. This allows you to see what your loved one is doing when you are out of the room. However, it may not not help when you aren't watching, as when you are asleep--there's no alarm.
Use pressure monitors. These have an alarm will alert you if your loved one gets up from bed or chair. You can get the kind that sounds in the same room, alerting your loved one too. If that would only confuse them or if you wouldn’t hear it there, you can get monitors with alarms that sound where you are.
Place foam swimming noodles near the edge of the bed, under the bottom sheet. This may keep your loved one from getting out of bed at night without your help.
Use a baby gate to block off stairs. Also, if you are already using a hospital bed with rails, put a baby gate at the end to stop your loved one from crawling out that way.
You can find the mats and monitors in the Supplies section of the LBD Book Corner on LBDtools.com.
Friday, April 5, 2013
A Lewy-Friendly Home, Part 1
Remodeling your home to make it Lewy-friendly can make it possible to keep your loved one home longer. And it is actually cost-effective. Residential care is expensive. If you can keep your loved one home just a few months, the savings will pay for the cost of the renovations. If you decide to renovate, consider the following for your bathroom:
An uncluttered, easily washable, non-slip floor that gently slopes right into the shower drain area with no barrier. This makes it easier and safer for persons with mobility issues to get in and out of the shower. It also makes cleaning the whole floor as easy as using the shower head to wash it away.
A commode chair and a hand-held shower head. Standing may not be safe. The hole in the commode chair makes it easier to wash up with little or no standing.
A toilet that is at least 16.6 inches high. If you can find one that attaches to the wall instead of the floor, that will make cleaning the floor easier.
A bidet toilet or a hand-held shower head for the toilet. If the shower is close by, you can just use a long hose. This makes cleaning up messes so much easier.Click here
to see an inexpensive hand-held sprayer for your present toilet.
Grab bars in all the needed places. Don't forget the shower.
A ceiling heating lamp with a timer to keep the bathroom warm. No one likes a cold room. If you become unable to verbalize how cold the bathroom feels, you may stop wanting to use it. (Space heaters are discouraged due to their dangers.)
Bathroom doors that open out and don’t have locks. If your loved one falls in front of the door, you may not be able to open it if it is an inward-opening door as most bathroom doors are. You could also install a pocket door, if an outward-opening door isn’t practical. As confusion sets in, a person may lock their door but not be able to unlock it. If locks are necessary, use one with a keypad.
Open shelves for needed items like towels and toilet paper. Having such supplies out in plain sight and easily reached increases independence and avoids confusion.
Electrical outlets in lockable cupboards. This keeps them accessible for use now and as dementia sets in and judgment disappears, they will be out of reach.
Limited mirrors and covers for any you do have. A person whose perceptions are compromised may not be able to recognize their own reflection and be frightened by the stranger in their home. Covering the mirrors usually solves this problem.
The rest of the house usually doesn't need much remodeling except for the entry way. If you have stairs, consider adding a ramp. An attractive entryway and ramp can add value to a house and makes the transition to wheelchair use much easier. Even if a wheelchair isn't needed, ramps are easier for an unsteady walker to negotiate.
An uncluttered, easily washable, non-slip floor that gently slopes right into the shower drain area with no barrier. This makes it easier and safer for persons with mobility issues to get in and out of the shower. It also makes cleaning the whole floor as easy as using the shower head to wash it away.
A commode chair and a hand-held shower head. Standing may not be safe. The hole in the commode chair makes it easier to wash up with little or no standing.
A toilet that is at least 16.6 inches high. If you can find one that attaches to the wall instead of the floor, that will make cleaning the floor easier.
A bidet toilet or a hand-held shower head for the toilet. If the shower is close by, you can just use a long hose. This makes cleaning up messes so much easier.Click here
to see an inexpensive hand-held sprayer for your present toilet.Grab bars in all the needed places. Don't forget the shower.
A ceiling heating lamp with a timer to keep the bathroom warm. No one likes a cold room. If you become unable to verbalize how cold the bathroom feels, you may stop wanting to use it. (Space heaters are discouraged due to their dangers.)
Bathroom doors that open out and don’t have locks. If your loved one falls in front of the door, you may not be able to open it if it is an inward-opening door as most bathroom doors are. You could also install a pocket door, if an outward-opening door isn’t practical. As confusion sets in, a person may lock their door but not be able to unlock it. If locks are necessary, use one with a keypad.
Open shelves for needed items like towels and toilet paper. Having such supplies out in plain sight and easily reached increases independence and avoids confusion.
Electrical outlets in lockable cupboards. This keeps them accessible for use now and as dementia sets in and judgment disappears, they will be out of reach.
Limited mirrors and covers for any you do have. A person whose perceptions are compromised may not be able to recognize their own reflection and be frightened by the stranger in their home. Covering the mirrors usually solves this problem.
The rest of the house usually doesn't need much remodeling except for the entry way. If you have stairs, consider adding a ramp. An attractive entryway and ramp can add value to a house and makes the transition to wheelchair use much easier. Even if a wheelchair isn't needed, ramps are easier for an unsteady walker to negotiate.
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