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 Short video+description of LBD 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Short video+description of LBD
This is a nice, short description of LBD that utilizes the explanation on the LBDA website ( about the three possible presentations of LBD -- dementia first, Parkinson's first, or psychiatric problems (hallucinations, etc) first. This description is posted to the WTVQ television station website in Lexington, KY.

There's a short (2 minute?) video that aired on Wednesday. The physician in the video is James Galvin, MD. He's on the LBDA's Scientific Advisory Council. He's based in NY so I'm not sure why a KY TV station is interviewing him!


Lewy Body Dementia

Lewy Body Disease is the second leading cause of brain degeneration. Because symptoms include Parkinson’s-like slowness and memory loss, it is often mistaken for these other disorders.

Lewy bodies are a kind of abnormal protein in the brain. Formation of the deposits is associated with a decrease in a brain chemical, dopamine, which is responsible for smooth, coordinated movement. When the deposits are confined to the brain stem, patients develop symptoms of Parkinson’s disease.

In Lewy body dementia (LBD), the abnormal proteins are found throughout the brain. In these other brain areas, the protein deposits cause depletion of acetylcholine, a brain chemical needed for perception, cognitive thought and control of behaviors.

The term, LBD, typically refers to one of two different conditions, based on how the symptoms first appear. In dementia with Lewy bodies, patients initially have problems with memory or thought. The symptoms are similar to those seen in Alzheimer’s patients. Eventually, however, patients who have dementia with Lewy bodies develop characteristic changes in attention, alertness, cognitive ability, movement problems, hallucinations and sensitivity to certain medications. Patients also develop a sleep condition, called REM sleep disorder, in which they act out in their dreams (like punching, kicking, etc.).

The second group of patients with LBD initially starts out with Parkinson-like movement problems. This is called Parkinson’s disease dementia. These patients eventually develop memory and cognitive problems, hallucinations and other signs associated with LBD.

A very small number of patients with LBD will initially have hallucinations, behavior problems and trouble with complex thought processes. These patients are the most likely to receive an accurate initial diagnosis.

The Lewy Body Dementia Association estimates about 1.3 million Americans have LBD. The condition is most common in older people, with symptoms most commonly appearing between 50 and 85. Men are affected more often than women. Family history also appears to play a role in risk for LBD. Generally, patients live for about 7 years after diagnosis.

Getting a Diagnosis
James Galvin, M.D., Neurologist with NYU Langone School of Medicine in New York City, says many physicians are unfamiliar with LBD. Since the symptoms are similar to Alzheimer’s and Parkinson’s disease (depending upon the initial presentation), misdiagnosis is common. However, it’s important to have an accurate diagnosis because some medications work better for LBD. In addition, Galvin says certain medications used to treat behavioral symptoms can increase movement problems in patients with LBD and, in severe cases, cause high fever, serious muscle rigidity, muscle breakdown, kidney failure and death.

Galvin recommends that a close family member be present during a patient’s evaluation. Often patients, themselves, aren’t aware of/or understand the severity of their symptoms. Most don’t remember acting out during REM sleep.

The NYU-Langone Lewy Body Disease Center was created specifically to help patients with LBD. Galvin says the center will serve as a central repository for information and diagnostic expertise. Families and physicians can get assistance over the phone on any day of the week. Eventually, there will be a website with information and resources. The center also provides support and therapy for caregivers and family members. Galvin adds, the center also provides a large pool of patients for doctors to draw from for clinical trials to test new diagnostic tools and treatments.

For information on Lewy Body Dementia:
Lewy Body Dementia Association,
National Institute of Neurological Disorders and Stroke,

Lim, Seok Ming, et al., “The 18F-FDG PET Cingulate Island Sign and Comparison to 123I-Beta-CIT SPECT for Diagnosis of Dementia with Lewy Bodies,” The Journal of Nuclear Medicine, October 2009, Vol. 50, No., 10, pp. 1638-1645.

Nelson, Peter, et al., “Low Sensitivity in Clinical Diagnoses of Dementia with Lewy Bodies,” Journal of Neurology, March 2010, Vol. 257, No. 3, pp. 359-366.

Nervi, Angela, M.D., et al., “Comparison of Clinical Manifestation in Familial Alzheimer’s Disease and Alzheimer’s Disease and Dementia with Lewy Bodies,” Archives of Neurology, December 2008, Vol. 65, No. 12, pp. 1634-1639.

Watson, Rosie, et al., “Magnetic Resonance Imaging in Lewy Body Dementias,” Dementia and Geriatric Cognitive Disorders, 2009, Vol. 28, No. 6, pp. 493-506.

Research compiled and edited by Barbara J. Fister

© 2011 Medstar Television, Inc. All Rights Reserved

Fri Feb 04, 2011 10:10 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Short video+description of LBD
Thank you, Robin. It is interesting that Dr. Galvin equates PDD with LBD. Derek has seen three neurologists and will see a fourth one later this month. The first one dx PDD, the second and third, LBD. In discussing the dx with the first neuro he admitted that LBD was likely but put his dx down as PDD. Perhaps he thought it was too obscure. I know we found that few general practitioners were familiar with it then so maybe that's why.

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Fri Feb 04, 2011 10:39 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Short video+description of LBD
There is continuing confusion about this. LBD = PDD *and* DLB. If PD symptoms appear first, then it's called PDD. If dementia or psychiatric symptoms appear first, it's called DLB. To call a disorder LBD (where the D=dementia) seems perfectly reasonable to me. After all, we have the LBDA, which supports both those with PDD and DLB.

Also, about why the MD wrote a certain diagnosis down.... There is no diagnostic code for DLB....I think. There is certainly a diagnostic code for PD and there probably is one for PDD (since Exelon is FDA-approved for use in PDD).

Fri Feb 04, 2011 11:43 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Short video+description of LBD
Thanks Robin. I'm glad to see any media exposure about this topic. Thirty+ years ago Coy heard a radio program about RBD, and that started us down a path of treating symptoms, greatly improving quality of life. Who knows what impact this brief introduction might have on individuals in the audience?

I didn't care for the statement, "Generally, patients live for about 7 years after diagnosis." I don't think it is particularly accurate, and without putting it in context I don't think it is helpful.

Could the folks who made up the naming conventions have made it any more confusing than to use LBD and DLB to mean two different but related things? Is keeping them straight a cognitive skills test? :lol:

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sat Feb 05, 2011 12:41 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Short video+description of LBD
A key point of confusion is that in the medical community, "LBD" means Lewy Body Disease. In the LB Dementia community, of course, it means Lewy Body Dementia.

Sat Feb 05, 2011 3:12 am

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Short video+description of LBD
Any opportunity to make "outsiders" aware of this disease is great. Perhaps the reason this is so difficult to diagnose is the wide range of symptoms and their manifestations that our LO's can exhibit. Also, unless a family member accompanies the patient into the exam room, many LBD folks are masters at showtime. Who knows how long my my MIL hid things from her doctor?

Donna (age 56) caregiver for mother-in-law Margaret (age 88).

Sat Feb 05, 2011 10:32 am
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