UPDATE on Dementia with Lewy Bodies

©Family Caregiver Alliance    Fact Sheet : Dementia with Lewy Bodies      Definition Dementia with Lewy Bodies (DLB) is a progressive degenerative disease or syndrome of the brain. It shares symptoms—and sometimes overlaps—with several diseases, especially Alzheimer’s and Parkinson’s. People who develop DLB have behavioral and memory symptoms of dementia like those of Alzheimer’s Disease and, to varying extents, the physical, motor system symptoms seen in Parkinson’s Disease. However, the mental symptoms of a person with DLB might fluctuate frequently, motor symptoms are milder than for Parkinson’s, and DLB patients usually have vivid visual hallucinations.   Facts Dementia with Lewy Body (DLB) is also called “Lewy Body Dementia” (LBD), “Diffuse Lewy Body Disease”, “Lewy Body Disease”, “Cortical Lewy Body Disease”, “Lewy Body Variant of Alzheimer’s Disease” or “Parkinson’s Disease Dementia.” It is the second most common dementia, accounting for 20% of those with dementia (Alzheimer’s Disease is first). Dementia is a gradual, progressive decline in mental ability (cognition) that affects memory, thinking processes, behavior and physical activity. In addition to these mental symptoms, persons with DLB experience physical symptoms of parkinsonism, including mild tremor, muscle stiffness and movement problems. Strong visual hallucinations also occur. DLB is named after smooth round protein lumps (alpha-synuclein) called Lewy bodies, that are found in the nerve cells of the affected parts of the brain. These “abnormal protein structures” were first described in 1912 by Frederich Heinrich Lewy, M.D., a contemporary of Alois Alzheimer who first identified the more common form of dementia that bears his name. Lewy bodies are found throughout the outer layer of the brain (the cerebral cortex) and deep inside the midbrain and brainstem. They are often found in those diagnosed with Alzheimer’s, Parkinson’s, Down syndrome and other disorders. The cause of DLB is unknown and no specific risk factors are identified. Cases have appeared among families but there does not seem to be a strong tendency for inheriting the disease. Genetic research may reveal more information about causes and risk in the future. It usually occurs in older adults between 50-85 years old and slightly more men than women have the disease.   Symptoms Initial symptoms of DLB usually are similar to those of Alzheimer’s or Vascular Dementia and are cognitive in nature, such as acute confusion, loss of memory, and poor judgment. Other patients may first show the neuromuscular symptoms of parkinsonism—loss of spontaneous movement, rigidity (muscles feel stiff and resist movement), and shuffling gait, while still others may have visual hallucinations as the first symptom. Patients may also suffer from delusions or depression. Key symptoms are: Problems with recent memory such as forgetting recent events. Brief episodes of unexplained confusion and other behavioral or cognitive problems. The individual may become disoriented to the time or location where he or she is, have trouble with speech, have difficulty finding words or following a conversation, experience visuospatial difficulty (for example, finding one’s way), and have problems in thinking such as inattention, mental inflexibility, indecisiveness, lack of judgment, lack of initiative and loss of insight. Fluctuation in the occurrence of cognitive symptoms from moment to moment, hour to hour, day to day or week to week. For example, the person may converse normally one day and be mute and unable to speak the next day. There are also fluctuations in attention, alertness and wakefulness. Well defined, vivid, recurrent visual hallucinations. These hallucinations are well formed and detailed. In DLB’s early stage, the person may even acknowledge and describe the hallucinations. They are generally benign and patients are not scared by them. Hallucinations may also be auditory (hearing sounds), olfactory (smelling or tasting something) or tactile (feeling or touching something that is not there). Movement problems of parkinsonism, sometimes referred to as “extrapyramidal” signs. These symptoms often seem to start spontaneously and may include flexed posture, shuffling gait, muscle jerks or twitches, reduced arm swing, loss of dexterity, limb stiffness, a tendency to fall, balance problems, bradykinesia (slowness of movement), tremor, shakiness, and lack of facial expression. Rapid Eye Movement Sleep Behavior Disorder. This is characterized by vivid dreaming, talking in one’s sleep, and excessive movement while asleep, including occasionally hitting a bed partner. The result may be excessive daytime drowsiness and this symptom may appear years before DLB is diagnosed. About 50% of patients have this symptom. Movement and motor problems occur in later stages for 70% of persons with DLB. But for 30% of DLB patients, and more commonly those that are older, Parkinson’s symptoms occur first, before dementia symptoms. In these individuals, cognitive decline tends to start with depression or mild forgetfulness.   Testing and Diagnosis Dementia with Lewy bodies is difficult to diagnose. Not only does it resemble other dementias, it overlaps with Alzheimer’s, Parkinson’s and other disorders which may result in it being difficult to rule out or exclude. Because no single test exists to diagnose DLB, a variety of medical, neurological and neuropsychological tests are used to pinpoint it and its possible overlap with other illnesses. A definitive diagnosis can only be made by an autopsy at death. There are no medications currently approved to specifically treat DLB. Although Lewy bodies are found in brains of patients with other diseases, and because testing will involve several approaches, it is useful to understand what happens to the brain of a person with DLB. Three significant changes or pathological features are seen in brains afflicted by DLB: The brain’s cerebral cortex (outer layers of the brain) degenerates or shrinks. This can affect reasoning and complex thinking, understanding personality, movement, speech and language, sensory input and visual perceptions of space. Degeneration also occurs in the limbic cortex at the center of the brain, which plays a major role in emotions and behavior. Lewy bodies form throughout these degenerating cortical areas. Nerve cells die in the midbrain, especially in an area that also degenerates in Parkinson’s disease, the substantia nigra, located in the brainstem. These cells are involved in making the neurotransmitter (brain messenger) dopamine. Lewy bodies are found in the nerve cells that remain. The midbrain is involved in memory formation and learning, attention, and psychomotor (muscular movement) skills. Lesions called Lewy neuritis that affect nerve cell function are found in DLB brains, especially in the hippocampus, an area of the brain essential for forming new memories. None of the symptoms of Dementia with Lewy Bodies is specific only to DLB. To address this problem, an international group of researchers and clinicians developed a set of diagnostic criteria in 1995, called the Consensus Guidelines that can reliably point to DLB: Must be present: Progressive cognitive decline (decrease in thinking ability) that interferes with normal social or occupational activities. Memory problems do not necessarily occur in the early period but will occur as DLB progresses. Attention, language, understanding and reasoning, ability to do arithmetic, logical thinking and perceptions of space and time will be impaired. Two of the following are present (one also indicates possibility of DLB): Fluctuating cognition and mental problems, vary during the day, especially attention and alertness. Visual hallucinations, detailed and well-formed visions occur and recur. Parkinsonism: motor related and movement problems appear. A DLB diagnosis is even more likely if the patient also experiences repeated falls, fainting, brief loss of consciousness, delusions, or is sensitive to neuroleptic medications that are given to control hallucinations and other psychiatric symptoms. Finally, the timing of symptoms is a reliable clue: if both mental and motor symptoms appear within one year of each other, DLB is more likely the cause. Signs of stroke or vascular dementia usually negate the likelihood of DLB. Testing is usually done to rule out other possible causes of dementia. Brain imaging (CT scan or MR imaging) can detect brain shrinkage and help rule out stroke, fluid on the brain (normal pressure hydrocephalus), or subdural hematoma. Blood and other tests might show vitamin B 12 deficiency, thyroid problems, syphilis, HIV, or vascular disease. Depression is also a common cause of dementia-like symptoms. Additional tests can include an electroencephalogram (EEG) or spinal tap. Scans using SPECT or PET technology have shown promise in detecting differences between DLB and Alzheimer’s disease.   Alzheimer’s and Parkinson’s: Differences and Overlap with DLB DLB’s similarity to Alzheimer’s and Parkinson’s diseases and the fact that Lewy bodies are often found in the brains of patients with these diseases means that clinicians must pay close attention to the factors that distinguish DLB: Memory and other cognitive problems occur in both DLB and Alzheimer’s. However, in DLB they fluctuate frequently. DLB patients experience more depression than do Alzheimer’s patients. Hallucinations are experienced by Alzheimer’s patients in late stages, and by Parkinson’s patients who take medications to improve movement and tremor. In DLB, hallucinations occur in early stages, and they are frequent, vivid and detailed. Neuroleptic drugs (sometimes called psychotropic drugs) prescribed to lessen the so-called psychiatric symptoms of dementia, such as hallucinations, agitation or restlessness will induce Parkinson’s in some DLB patients. Life expectancy is slightly shorter for DLB than for Alzheimer’s patients. At autopsy the brains of DLB patients have senile plaques, a hallmark of Alzheimer’s. Another Alzheimer’s feature, neurofibrillary tangles, are absent or found in fewer numbers and are concentrated in the neocortex. Other Alzheimer’s features—regional neuronal loss, spongiform change and synapse loss, neurochemical abnormalities and neurotransmitter deficits—are also seen. However, DLB-afflicted brains are less damaged than are Alzheimer’s brains. In DLB movement problems are spontaneous; the symptoms begin suddenly. Tremor is less pronounced in DLB than in Parkinson’s. Also, DLB patients respond less dramatically to drugs such as Levodopa that are used to treat Parkinson’s. Nerve cell loss in the subtantia nigra is not as severe in DLB. Both DLB and Parkinson’s patients may sometimes experience fainting and wide alterations in blood pressure. Some Parkinson’s patients develop dementia in later stages. Dementia is usually the presenting symptom in DLB. Parkinson’s patients lose the neurotransmitter dopamine; Alzheimer’s patients lose the neurotransmitter acetylcholine. DLB patients lose both. In DLB, Alzheimer-like and Parkinson-like symptoms appear within one year of each other. Despite these differences, a diagnosis of Dementia with Lewy Bodies does not preclude a positive diagnosis of Alzheimer’s, Parkinson’s or other diseases common in older age.   Duration and Treatment With an average lifespan after onset of 5 to 7 years, the progress of Dementia with Lewy Bodies is relentless; however, the rate of decline varies with each person. DLB does not follow a pattern of stages as is seen in some other dementias. Death usually occurs from pneumonia or other illness. There is neither cure nor specific treatment to arrest the course of the disease. Caution must be used in treating a person with DLB. Medications must be monitored closely for proper balance because some patients are adversely affected by some drugs. Neuroleptic (tranquilizing) anti-psychotic medications such as haloperidol (Haldol) or thioridazine (Mellaril), as well as benzodiazepines (Valium, Ativan) and anti-histamines can cause extreme adverse reactions in DLB patients. Side effects include motor related symptoms, catatonia (non-responsiveness), loss of cognitive function and/or development of muscle rigidity. These medications are sometimes used in Alzheimer’s patients to help with hallucinations and behavioral symptoms, but should not be used in patients with DLB. Levodopa may be given to treat the parkinsonism, however, it may increase the hallucinations of DLB patients and aggravate other symptoms, such as cognitive functioning. It is less effective in treating tremor in DLB patients than in Parkinson’s patients. Aricept or other cholinesterase inhibitors are given to treat the hallucinations. Some anti-depressants have shown positive results, while others are counter indicated. When considering surgery, families should meet with the anesthesiologist to discuss possible side effects of anesthesia, as DLB patients are prone to delusions and a decline in motor functioning after anesthesia.   Caregiving and DLB DLB patients can live at home with frequent reassessment and careful monitoring and supervision. Caregivers must watch the patient closely because of the tendency for them to fall or lose consciousness. Particular care should be taken when a patient is standing up from a chair or getting out of bed, as blood pressure can drop, causing the patient to lose his or her balance. Dementia prevents patients from learning new actions that might help them overcome movement problems, such as learning to use a walker. They may need more assistance some days than others, and can be reassured by a caregiver’s help in turning attention away from the hallucinations. Caregivers must learn to navigate both skills in dealing with cognitive, behavioral and motor disabilities. Attending support groups and learning skills in how to communicate with someone with dementia as well as learning skills in helping someone with a motor disorder will reduce caregiver stress and frustration. Caregivers can turn to a California Caregiver Resource Center for assistance and to a qualified diagnostic center for initial diagnosis and follow up. In other states, resources can be found through local and state offices on aging and health such as your Area Agency on Aging or the Alzheimer’s Association in your area.   Credits and References Lewy Body Dementia Association. P.O. Box 451429. Atlanta, GA 31145. (404) 422-5434. www.lbda.org Riding the Roller Coaster with Lewy Body Dementia by Helen Whitworth, available at lbd@whitworth2.com, or (480) 981-1117. LewyNet, The University of Nottingham, Division of Pathology, University Park, Nottingham, England NG7 2RD. Telephone +44 115 9515151. Web site: http://www.ccc.nottingham.ac.uk/~mpzjlowe/lewy/lewyhome.html. “Dementia with Lewy Bodies: A Distinct Non-Alzheimer Dementia Syndrome?” by Paul G. Ince, Elaine K. Perry, and Chris M. Morris, Brain Pathology, April, 1998. (Available with extensive bibliographies at LewyNet web site.) “Similarities to Alzheimer’s and Parkinson’s Make Lewy Body Dementia Difficult to Recognize and Challenging to Treat,” John Douglas French Center for Alzheimer’s Disease Journal, 1998/1999. Parkinson’s Disease UPDATE, a monthly newsletter, Medical Publishing Company, P. O. Box 450, Huntingdon Valley, PA 19006. Issue #10, 2000. “Dementia with Lewy Bodies” by Ian G. McKeith, M.D., FRCPsych., High Notes, News from the John Douglas French Alzheimer’s Foundation, Fall, 1996. “Consensus guidelines for the clinical and pathological diagnosis of dementia with Lewy bodies (DLB): report of the consortium on DLB International Workshop,” by I. G. McKeith, D. Galasko, K. Kosaka, E. K. Perry, et al, 1996. Neurology, 47:1113-24. Dementia with Lewy Bodies by Robert H. Perry, Ian G. McKeith, and Elaine K. Perry (editors), Forward by Jeffrey L. Cummings, 1996. Cambridge University Press, Cambridge.   Other References Ala, T. A., Yang, K. H., Sung, J. H., Frey, W. H., 1997. Hallucinations and signs of parkinsonism help distinguish patients with dementia and cortical Lewy bodies from patients with Alzheimer’s disease at presentation: a clinicopathological study. Journal of Neurology, Neurosurgery and Psychiatry, 62:16-21. Dickson, D. W., Ruan, D., Crystal, H., Mark, M. H., et al, 1991. Hippocampal degeneration differentiates diffuse Lewy body disease (DLBD) from Alzheimer’s disease. Neurology, 41:1402-9. Galasko, D., Katzman, R., Salmon, D. P., Hansen, L., 1996. Clinical features and neuropathological findings in Lewy body dementias. Brain Cognition, 31:166-75. Graham, C., Ballard, C., Saad, K., 1997. Variables which distinguish patients fulfilling clinical criteria for dementia with Lewy bodies from those with dementia, Alzheimer’s disease. International Journal of Geriatric Psychiatry, 12:314-8. Hansen, L. A., Samuel, W. 1997. Criteria for Alzheimer’s disease and the nosology of dementia with Lewy bodies. Neurology, 48:126-32. Ince, P., Irving, D., MacArther, F., Perry, R.H., 1991. Quantitative neuropathology of the hippocampus: comparison of senile dementia of Alzheimer type, senile dementia of Lewy body type, Parkinson’s disease and non-demented elderly control patients. J Neurol Sci, 106:142-52. Ince, P. G., McArthur, F. K., Bjertness, E., Torvik, A., et al, 1995. Neuropathological diagnoses in elderly patients in Oslo: Alzheimer’s disease, Lewy body disease and vascular lesions. Dementia, 6:162-8. Klatka, L. A., Louis, E. D., Schiffer, R. B., 1996. Psychiatric features in diffuse Lewy body disease: a clinicopathological study using Alzheimer’s disease and Parkinson’s disease. Neurology, 47:1148-52. Kosaka, K., Iseki, E., Odawara, T., et al, 1996. Cerebral type of Lewy body disease. Neuropathology, 16:32-5. Louis, E. D., Klatka, L. A., Lui, Y., Fahn, S., 1997. Comparison of extrapyramidal features in 31 pathologically confirmed cases of diffuse Lewy body disease and 34 pathologically confirmed cases of Parkinson’s disease. Neurology, 48:376-80. McKeith, I. G., Fairbairn, A., Perry, R. H., Thompson, P., Perry, E. K., 1992. Neuroleptic sensitivity in patients with senile dementia of Lewy body type. British Medical Journal, 305:673-8. Mega, M. S., Masterman, D. L., Benson, D. F., Vinters, H. V., et al, 1996. Dementia with Lewy bodies: reliability and validity of clinical and pathological criteria. Neurology, 47:1403-9. Perry, E. K., Haroutunian, V., Davis, K. L., Levy, R., et al, 1994. Neocortical cholinergic activities differentiate Lewy body dementia from classical Alzheimer’s disease. Neuroreport, 5:747-9. Salmon, D. P., Glasko, D., Hansen, L. A., Masliah, E. et al, 1996. Neuropsychological deficits associated with diffuse Lewy body disease. Brain Cognition, 31:148-65. Samuel, W., Alford, M., Hofstter, C. R., Hansen, L., 1997. Dementia with Lewy bodies versus pure Alzheimer’s disease: differences in cognition, neuropathology, cholinergic dysfunction, and synaptic density. Journal of Neuropathology and Experimental Neurology, 56:499-508.   Resources Family Caregiver Alliance 180 Montgomery Street, Suite 900 San Francisco, CA 94104 (415) 434-3388 or (800) 445-8106 (415) 434-3408 (Fax) E-mail: info@caregiver.org Web Site: www.caregiver.org Family Care Navigator: http://caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083 Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy. FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues; provides assistance in the development of public and private programs for caregivers; publishes timely reports, newsletters and fact sheets; and assists caregivers nationwide in locating resources in their communities. For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s and other debilitating health conditions that occurs most often in adults.   Reviewed by William Jagust, MD and prepared by Family Caregiver Alliance. February 2001. Updated June, 2010. Funded by the Alameda County Area Agency on Aging and the California Department of Mental Health. ©2010 All rights reserved.

What do I think about embryonic stem cell research?

Embryonic stem cells, as their name suggests, are derived from embryos. Specifically, embryonic stem cells are derived from embryos that develop from eggs that have been fertilized in vitro—in an in vitro fertilization clinic—and then donated for research purposes with informed consent of the donors. They are not derived from eggs fertilized in a woman’s body. (In vitro fertilization—A technique that unites the egg and sperm in a laboratory, instead of inside the female body).

Any condition in which there is tissue degeneration can be a potential candidate for stem cell therapies, including Alzheimer’s disease, Parkinson’s disease, spinal cord injury, lung disease, stroke, burns, heart disease, Type 1 diabetes, osteoarthritis, rheumatoid arthritis, Lou Gehrig’s disease, muscular dystrophies, sickle cell anemia, liver diseases, cancer, multiple sclerosis, hundreds of rare immune system, genetic disorders and organ failure.

Arguments for embryonic stem cell research

• Stem cell transplants already save lives everyday.  Between 100 and 150 million people in the United States suffer from diseases who could also benefit from potentially treatment with stem-cell-derived therapies.
• Bone marrow transplants transfer tens of thousands of cells of many different kinds to a patient, most critically this procedures transfers hematopoietic (adult blood) stem cells.  Hematopoietic stem cell transplants routinely save the lives of people with diseases such as leukemia, lymphoma, and immune deficiencies.
• Embryos created at the request, and financial and emotional costs of couples attempting to conceive should have full rights to decide what to do with unused embryos — even permit them to be used to stem cell harvesting and research.  The idea of having their "baby" defrosted on a lab surface to die, rather than contribute to the "good of mankind" has been a spoken issue for parents whose embryos fate was decided for them.
• Without private business and investors willing to take risks, we would have fewer medications, treatments, and technology than we have available to us today.  There would be less competition to find better and more affordable ways to manage disease.  To demonize the privatization of stem cell research is unfounded:  even government and "not-for-profit" science still must generate success in order to receive continued funding and recognition.  The notion that simply because a business seeks to make a profit makes it incapable of ethical practices and abiding by government regulations is like saying just because you work for a paycheck — for personal profit — that you will not be a good employee.  Money is not evil, and not all those skilled in business lack morals and ethics.  Look at Bill and Melinda Gates, Lee Iococa, or many of the other successful businesses that give back generously.
• The stage at which human embryos are harvested (the blastocyst stage) occurs about 5-7 days after conception.  At this point in development, the blastocyst consists only of a mass of cells and a personal identity as not yet been decided.  From a biological point of view, this is still a stage of human cells, not of a human.  Cells are the building blocks that differentiate (specialize) to form organs, tissues and systems.  These things are what make up a human.  Cells that have not even formed into organs are tissues are pre-human, at best.
• The Catholic Church states that life begins at conception.  They also state that life is chosen by God and therefore prohibit the use of any birth control — even the rhythm method.  They teach that the use of birth control keeps a person from being born.  Do we then need to address the rights ofeggs or sperm being denied a chance at life when a couple decides to use birth control?
• The Catholic Church also (currently) forbids the use of condoms — even between married couples when one partner may be HIV infected.  Not all religious decisions intended to "save" lives do just that.  Some "moral" proclamations, like forbidding condoms, actually result in the loss of life.
• Cord blood, and adult stem cells are older cells.  They grow more slowly than do embryonic stem cells, and are harder to isolate.  While embryonic cells have almost unlimited potential to differentiate, adult stem cells do not, and not all adult stem cells have yet been isolated for all tissues of the body.
• Adult stem cells are often only present in very small quantities.  Embryonic stem cells are more plentiful, easier to identify, isolate, purify, and are not only more plastic (easier to manipulate) that are also easier to grow.
• In order to use adult stem cells, they must be isolated and grown in sufficient quantity for treatment.  Adult stem cells are fewer, reproduce slower, and it is therefore more difficult to grow the quantity needed — more difficult and more costly.  For persons suffering from acute disorders, stem cell therapy from a patient’s own adult stem cells might not be able to be generated quickly enough to help the patient.
• Adult stem cells are not the best choice for treating diseases that are genetically based:  the adult stem cells would probably also contain the same genetic defect and therefore, could not be used for treatment.
• Adult stem cells also have more DNA structural abnormalities.  Daily living can cause DNA changes that would result in less certain "quality" of stem cells.  Even exposure to sunlight, toxins in food and the environment can damage DNA.  As a person ages, there are also naturally occurring changes (errors) in DNA replication as part of the aging process.
• Using embryos may not always be necessary, but may prove a more expedient way to find appropriate and alternative approaches using adult stem cells.  Already, several scientists have developed new harvesting and stem cell technologies that do not require destruction of an embryonic cell.
• The NIH defines stem cell lines as: "Stem cells which have been cultured under in vitro conditions that allow proliferation without differentiation for months to years."  There are currently many adult stem cell lines (e.g., hematopoietic stem cells) and there are presently 78 embryonic stem cell lines) from IVF embryos around the world. But scientists want more embryonic stem cell lines because the existing ones cannot be used in people.  Many are not good quality, and because they are grown on mouse tissue they might transmit animal viruses.
• The class of stem cells called pluripotent, meaning the cells have the potential to develop into almost all of the more than 200 different known cell types. Stem cells with this unique property come from embryos and fetal tissue.  Stem cells in adult tissues do not appear to have the same capacity to differentiate as do embryonic stem cells or embryonic germ cells.  When undifferentiated embryonic stem cells are injected into mice, benign tumors form.  For this reason, scientists do not anticipate that undifferentiated embryonic stem cells will be used for transplants or other therapeutic applications.

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Arguments against embryonic stem cell research

• The first tenet of ethics asks us to consider this responsibility:  to do what is right and shun what is wrong.  Although what is "right" and what is "wrong" is subjective, there are many that feel strongly that to take a life, any life, even that of an embryo, is inherently wrong.  And even those in favor of embryonic stem cell harvesting, may offer the argument that the end justifies the means.  Those that use this argument, are in essence, agreeing that the killing of embryos takes place.  They simply place a higher value of life on those already born, than for those unborn.  Who are we to decide whose life is more important?
• The deliberate destruction of human life cannot be justified even with the goal of saving another life.  Who speaks for the embryo?  It is different to offer up one’s own life from being offered for sacrificed without a say.  Harvesting stem cells from embryos results in death of the embryo — a life is sacrificed without a choice.
• To say that an embryo in the blastocyst stage, a point in development where neither a human identity nor capacity to feel or think is yet present diminishes the value of life.  In less than nine months, any embryo has the potential to grow into an organism that will have emotions, thoughts, feelings, and needs.  In fact, this ability occurs months before actually being born.
• To say that simply because a person lacks self-awareness, or the ability to feel or process feelings is invalid.  Persons who are comatose also lack these abilities but we don’t kill them.  There are forms of mental illness and personality disorders that make it impossible for a person to experience normal awareness, emotion or feeling.  We do not execute people simply because that lack, or lost, an ability to partake in daily life activities with personal meaning or awareness.
• Frozen embryos will eventually die (or be discarded, resulting in death).  This does not warrant an excuse to kill them prematurely. Everyone dies eventually, but in the United States it is still illegal to assist a person in suicide (premeditated, premature death). Even those incarcerated for life are entitled to the natural course of death.
• Funding is limited when it comes to research.  So far, the use of embryonic stem cells is expensive, difficult, and controversial. Funding for research should be funneled into adult stem cell research which has already produced encouraging breakthroughs and would result in the ability to help others without killing embryos.
• Adult stem cell research has already been shown to have potential.  If adult stem cells can be used, it would negate the need to create embryos for the purpose of research or treatment.  Using adult stem cells eliminates the potential "market" nightmare of persons that would by or sell eggs to create embryos.  A black market already exists for selling body organs.  What is to stop a black market developing for selling embryos as well?
• As the U.S. government severely limits funding and restrictions on human cloning and stem cell research.  Already, many of the cell lines available for research currently belong to private companies.  A major hallmark of any business is to be profitable.  Private industry may put profit ahead of principle and public opinion and vote will have minimal impact on the privatization of stem cell research ethics.
• There are many in the scientific community that believe the potential benefits of embryonic stem cells are still a long way off in the future.  Should we continue to invest time, money and human suffering in an avenue that may not even prove to be the best or only way to find new treatments for devastating disease?
• The destruction of human embryos for research is morally repugnant to many individuals, human rights advocates, as well as to influential religious groups including the Catholic Church and Christian fundamentalists.  These voices, when united, may have the power to limit, or halt certain research.  So does it make sense to invest in something that may not be able to stand up to public opinion?
• Unused or unwanted embryos left over from couples who underwent in vitro fertilization does not make an embryo less human, or less entitled to rights.  If only humans who are "wanted’ had rights, where does that leave children placed for adoption, the homeless in society, the institutionalized, or those "stashed" in nursing home facilities?  Even those incarcerated have certain rights.
• Immune rejection, when the body detects and rejects what it perceives as "foreign" invaders is a potential problem when using embryonic stem cells because the cells.  Using adult stem cells from the same person in need of treatment (using one’s own stem cells) would eliminate the need for anti-rejection drugs which can have serious side effects.
• The Nuremberg Code specifically states that "voluntary consent is absolutely essential" in medical research.  It strictly prohibits experimentation that causes injury, disability or a person’s death.  Any practice that results in injury or death to a human embryo violates this code.
• There are plenty of people willing, and actively "adopting" unwanted embryos.  By placing embryos for adoption we offer children a chance to be born and more couples to become parents.
• Once we open "Pandora’s Box" what is to stop science from taking embryos and growing them into babies to be harvested for organs, tissues, or simply for research purposes?  If supporters of stem cell research do not believe life begins until late-pregnancy or birth, and that until a baby is born has no rights, there may be other moral lines too easily crossed.

My thoughts on embryonic stem cell research

1.  If it is true that life begins at conception, then it is only fair to completely abolish in vitro fertilization.  (I don’t see objections to this from opposers to embryonic stem cell research). How can they have it both ways? Since embryos are created knowing that most will never survive and those unused will either be frozen or thrown away.  If using am embryo for research is "killing" then why is it not killing to discard embryos, or implant 2 or 3 at a time in hope that even 1 will survive?

2.  How can something which is frozen be considered life?

 

Yes, I do believe in the arguments for embryonic stem cell research.

 

Warmly………David

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Up from the grave he arose

Wow! What an experience I’ve just had. Thing only thing I barely remember last Sunday was that the Steelers won the Super Bowl. The last couple of days had me wondering. I do think it’s the worst I have ever been with the LBD.

I’ve underlined the worst symptoms I had in the following review of LBD which I posted last week.

Lewy Body Dementia Symptoms as explained by the Lewy Body Dementia Association

Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms

Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

I’m coming back to myself once again–

Now to start catching up with 1009 emails. I’ll just do it little by little.

Warmly………David

Boys and Sports

First of all, I’d like to thank those of you who’ve already voted for the blog, for all those who’ve made comments and to those of you who like the new blog look. I keep experimenting with different themes………I think I’ll stick with this one. It gives me a few more options which I can use over time. Plus it just seems easier to read.

I thought I’d post a little review on the symptoms of Lewy Body Dementia.

Lewy Body Dementia Symptoms as explained by the Lewy Body Dementia Association

In this section we’ll discuss each of the symptoms, starting with the key word: dementia. Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms

Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

All right now. Enough of some serious material. Now it’s time to play. These are the kind of puzzles which make me feel really smart. The more I do, the smarter I feel. I hope they help you just as much.

Boys and Sports
by Shelly Hazard

Wilma and three other women were comparing notes about the achievements of their sons. Each son had a favorite sport and each was a star player. The boys ranged in age from 10 years old to 13 years old. Determine the full name of each mother, the name of her son, the sport each son played, and how old each son was.

1. Sara Copper’s son, who wasn’t Brian, didn’t play soccer.

2. The boy who played basketball was the youngest. Mrs. Green’s son was a year younger than the boy who played baseball but a year older than Sara’s son.

3. The oldest boy, who wasn’t Mark, was Sharon’s son but he didn’t play hockey.

4. The boy who played baseball was a year older than the boy who played hockey.

5. From youngest to oldest, the boys were Mark, Teresa’s son, Mrs. Silver’s son, and Eric.

6. Mrs. Wild’s son was two years older than Chris.

Click here for the Solution

Warmly………David

Your Ideas Regarding a Brain Gift

I’ve added Dementia for 2 to my Blogroll.

Stephanie Grabreck wrote this controversial article on brain donors for research.

Brain tissue —More donors are urgently needed

More people need to donate their brains to medical research if cures for diseases like dementia are to be found, UK scientists say.

They say research is being hampered by a gross shortage of brains and are urging healthy people as well as those with brain disorders to become donors.

Brain research has proved essential for finding new treatments – such as dopamine for Parkinson’s disease.

Brain investigator Dr Payam Rezaie called the current situation “dire”.

He said thousands more brains were needed to look for the cause and treatments for conditions like autism and Alzheimer’s disease.

Most drugs already developed for brain-related diseases have relied on research using human brains

Dr Rezaie, from the Neuropathology Research Laboratory at the Open University, said: “For autism, we only have maybe 15 or 20 brains that have been donated that we can do our research on. That is drastically awful.

“We would need at least 100 cases to get meaningful data. But that is just one example. A lot of research is being hindered by this restriction.”

Short supply — Professor James Ironside, of the Human Tissue Authority, which regulates the donation process, said as well as a shortage of diseased brains to study, there was a bigger problem of getting hold of healthy donor brains for comparison.

He said this was down to poor awareness rather than people being squeamish.

BRAIN BANK BREAKTHROUGHS

• Discovery of L-dopa treatment for Parkinson’s disease
• Discovery of amyloid deposition in Alzheimer’s disease
• Discovery of Lewy bodies in dementia
• Discovery of variant Creutzfeldt-Jakob Disease
• Discovery of the role of glutamate in Schizophrenia

He helped set up a brain bank in Scotland to collect normal “control” brains from people who had died unexpectedly and needed an autopsy by law to establish the cause of death.

“We were surprised and pleased that over 90% of the relatives approached in this way gave consent.” He said more needed to be done to raise public awareness.

Dr Kieran Breen, of the Parkinson’s Disease Society, said over 90% of the brains in their bank at Imperial College London were from patients, with the remaining 10% of “healthy” brains donated by friends or relatives of patients.

“It is a question of awareness rather than anything else.”

But he said scandals like Alder Hey – where organs were kept without consent – have put some off donating their organs to medical research.

“There is also confusion. Some people are under the impression that if they sign up for a donor card that will include donating their brain for research. But it won’t.

Dr Lorna Wing, a retired expert who studied autism and helped change thinking about the condition as a spectrum disease rather than a single disorder, consented to donating the brain of her daughter, who had autism, after she died unexpectedly aged 49. “My husband and I still mourn her loss. One consolation for us is that we donated her brain and are donating ours in our wills.”

“Donor cards are about donating organs for transplant, not for medical science.”

He said anyone interested in becoming a donor should contact one of the 15-20 brain banks dotted around the UK.

The Medical Research Council is setting up a network to coordinate the existing brain banks from one central location. It is hoped this will make it simpler for those wanting to donate and for researchers to pool information and resources.

Dr Marie Janson, of the Alzheimer’s Research Trust, said: “Donated brains can be an immense help in the fight against dementia and are likely to become more important in the future.

“Most drugs already developed for brain-related diseases have relied on research using human brains.

“Unfortunately dementia research is still severely underfunded, and – if new treatments are not found – the number of people with dementia in the UK could increase from 700,000 to 1.5 million within a generation.”

Comment? Opinions? Questions?  Click here.

Oh yes. I’ve added a foreign language widget on the right side of the page. I’m finding there are more bilingual readers than I imagine.

Warmly………David Thomas

Nice Links for Caregivers and Dementia — Another Word Sequence Puzzle

I want to say thanks to all of you who commented on Hope’s situation. I hope the comments were helpful to here. Here is a site I just came across this morning. I thought of Hope right away. Family Caregiving 101

Yesterday proved to be interesting to me. I went for a haircut. For some reason, the Parkinsonian symptoms of my LBD started to get worse. My leg muscles seemed a little more stiff than usual and I seemed to be walking slower with some balance problems. The tremors were more marked than usual and I had some difficulty signing the credit card slip. My handwriting was definitely smaller than usual. Even the hairdresser commented on it. She said she was familiar with my symptoms since her uncle suffers from pure Parkinson’s disease. But, again, one day at a time. It just reminded me that Lewy lurks in the shadows…

It seems like Christmas was just yesterday. How did we manage to get to January 7th so quickly? Time really is flying by.

‘More brains needed’ if dementia cure found

Here’s a great post with nice pictures on Parkinson’s Disease Dementia.

Which is the next word in this sequence?

Choose from:

Check in tomorrow for the correct answer!

Warmly……………David Thomas

“My Pioneer Woman” by Lynn Dougherty

 

Lynn's Mother's Birthday -- December 2004

My name is Lynn.  I am an only child.  As a child, there was never more than my dad, my mom and me in the household.  We were a military family, never living close to family members so it was our own version of the Three Musketeers.  When Dad was sent on temporary duty assignments, it was Mom and me as the Two Musketeers.

Mom was born in Manhattan and lived there all of her youth until moving to South Dakota with Dad’s first assignment.  Life there was very different from Manhattan.  Mom never learned to drive a car since it was never necessary and, at that time, not the usual occurrence for a woman.  Living in the open spaces of South Dakota posed issues, particularly when Dad was elsewhere, sometimes for months at a time…no public transportation and harsh winters had their own challenges.  Mom always rose above those challenges…somehow.

 

Mom learned how to drive when I was young, maybe about 7 or 8, in the mid-1950s.  One of her first trips outside of the normal around-base travel was to California, sharing the ride with another military wife and her two sons.  I can’t imagine the courage it took for these two women to get into a car and travel so far, young children in tow, in order to not be separated from their husbands for a prolonged period of time.  Then again, Mom often showed a great deal of courage during my growing years, often in ways I took for granted.  After all, military wives are like none other when it comes to being independent and strong.

 

My dad fell ill when I was in high school while at a duty station outside the continental United States.  He was med-evac’d to a hospital in stateside.  Mom and I stayed behind to clear base housing which was no easy feat, packing our belongings and arranging for the eventual transport of our newly-adopted dog, all the while worried about my father’s well-being and separated by thousands of miles.  When Dad was released from the hospital to a new duty station, it was with restrictions on his activities.  When he retired from military service for medical reasons, the restrictions still applied.

 

Mom sought employment to help stretch the budget and make ends meet.  I went to work immediately after high school graduation and Dad eventually was able to find a job that provided for his physical limitations.  With one car between us, we made it all work.  In 1968, I married and moved to Florida to help my new husband’s father who was having health issues.  Mom and Dad moved in with us in 1970 because my father’s health had deteriorated to the point where Mom needed assistance with his care; finances just didn’t allow for Dad to be disabled and my mother not to work outside the home.  In 1974, my father died.  Later that year, Mom went back to work and moved to an apartment, trying to find a new purpose in life and a way to survive the loss of her husband.

 

The years between 1974 and 1996 were interesting ones for Mom.  She did a little traveling with friends newly-discovered during that portion of her life journey.  She tried all sorts of new hobbies from square dancing to joining a senior citizen entertainment group (she always wanted to be a Rockette!).  In 1996, Mom was diagnosed with a brain tumor which a very skilled neurosurgeon successfully removed.  Three months of physical and occupational therapy were necessary to bring Mom back to a point where she could return to living independently.  She worked hard and she did achieve that goal!  Four years later, it was necessary for her to have a total knee replacement.  Again, physical therapy was a challenge but she did it, fighting, as she always had, to be independent.

 

In 2004, we began to notice changes in Mom but attributed them to her aging and the many challenges that she had endured.  In 2004, Mom came to us and told us she decided she should not drive a car any longer, certainly a decision that was difficult for her.  Each year, Mom had follow-up tests and evaluations done by the neurosurgeon to ensure that the tumor did not return.  During the 2005 evaluation process, the neurosurgeon referred Mom to a neurologist for an evaluation for some subtle changes being noted.  In February, 2006, Mom was diagnosed with Mild Cognitive Impairment; that neurologist told us to find a place for Mom to live with assistance as soon as possible.  That move was done in May, 2006.  In September of that year, Mom was moved to the secure unit because her confusion had become a problem and a worry.   In September of this year, Mom was moved to the advanced unit because her decline necessitated full care.

 

Throughout the disease process and many questions as to which disease was at the forefront, Mom has retained her smile and her determination.  She can no longer walk and she does bemoan that loss.  She can no longer feed herself and that offers frustration for her.  The official diagnosis was finally offered earlier this year…Lewy Body Disease with Parkinson’s.  That explains how Mom can vary so much from day to day, sometimes hour to hour, in her lucidity.  The Parkinson’s has taken a larger toll on her body than the Lewy Body has taken on her mind, probably thanks to the medications for the dementia.  But the kind, determined woman I’ve known all of my life is still there.

 

Mom always worried about being a burden, never wanting such a thing to happen.  I visit Mom daily, usually during the dinner hour so I can feed her and add my observations to the daily journal for the neurologist.  My wonderfully supportive husband also visits Mom nearly every day, helping to keep that connection that can so easily fade from their memories.  Mom isn’t a burden…she’s my mother.  I fear that I will become the lone Musketeer long before I would have wanted.  But, there will always be those memories of the strong, independent woman who was always there for her husband and her daughter.  As Mom approaches her 87^th birthday on Christmas Eve, we can all be thankful for every moment we can still share with her.  She is my pioneer woman!

 

Lynn Dougherty

Florida