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.

 

20 tips to help ward off dementia — ah, yes. Check out the little joke at the bottom

I can relate to 15 of these tips. All I can think of is that they must have staved off my developing LBD (Lewy Body Disease) at an earlier age. This, I will never know. I think it also tells us something about dementia. There have to be other factors involved other than these tips. Otherwise, people who have beefed up their brain by doing many of these tips, along with others (foods, etc.) which I’ve posted along the way, should be the last who would develop dementia. Why do some people live to be over 100 years old have a clear, solid mind when they have taken on few of these ideas? Again, will anyone ever truly know. There is so much more involved in this very complex syndrome called dementia.

The more I study about dementia, the more I realize that its prevalence has caused many of us to look at anything and everything as the culprit to this disease. But this is good. When we stop searching, we die.

 

20 tips to help ward off dementia           By Linda Shrieves

Timing is everything, comedians say.

It’s also important when it comes to taking care of your brain. Yet most of us start worrying about dementia after retirement — and that may be too little, too late.

Experts say that if you really want to ward off dementia, you need to start taking care of your bean in your 30s and 40s — or even earlier.

"More and more research is suggesting that lifestyle is very important to your brain’s health," says Dr. Paul Nussbaum, a neuropsychologist and an adjunct associate professor at the University of Pittsburgh School of Medicine. "If you want to live a long, healthy life, then many of us need to start as early as we can."

So what can you do to beef up your brain — and possibly ward off dementia? Nussbaum, who recently gave a speech on the topic for the Winter Park (Fla.) Health Foundation, offers 20 tips that may help.

1. Join clubs or organizations that need volunteers. If you start volunteering now, you won’t feel lost and unneeded after you retire.

2. Develop a hobby or two. Hobbies help you develop a robust brain because you’re trying something new and complex.

3. Practice writing with your nondominant hand several minutes every day. This will exercise the opposite side of your brain and fire up those neurons.

4. Take dance lessons. In a study of nearly 500 people, dancing was the only regular physical activity associated with a significant decrease in the incidence of dementia, including Alzheimer’s disease. The people who danced three or four times a week showed 76 percent less incidence of dementia than those who danced only once a week or not at all.

5. Need a hobby? Start gardening. Researchers in New Zealand found that, of 1,000 people, those who gardened regularly were less likely to suffer from dementia. Not only does gardening reduce stress, but gardeners use their brains to plan gardens; they use visual and spatial reasoning to lay out a garden.

6. Buy a pedometer and walk 10,000 steps a day. Walking daily can reduce the risk of dementia because cardiovascular health is important to maintain blood flow to the brain.

7. Read and write daily. Reading stimulates a wide variety of brain areas that process and store information. Likewise, writing (not copying) stimulates many areas of the brain as well.

8. Start knitting. Using both hands works both sides of your brain. And it’s a stress reducer.

9. Learn a new language. Whether it’s a foreign language or sign language, you are working your brain by making it go back and forth between one language and the other. A researcher in England found that being bilingual seemed to delay symptoms of Alzheimer’s disease for four years.

10. Play board games such as Scrabble and Monopoly. Not only are you taxing your brain, you’re socializing too. (Playing solo games, such as solitaire or online computer brain games can be helpful, but Nussbaum prefers games that encourage you to socialize too.)

11. Take classes throughout your lifetime. Learning produces structural and chemical changes in the brain, and education appears to help people live longer. Brain researchers have found that people with advanced degrees live longer — and if they do have Alzheimer’s, it often becomes apparent only in the very later stages of the disease.

12. Listen to classical music. A growing volume of research suggests that music may hard wire the brain, building links between the two hemispheres. Any kind of music may work, but there’s some research that shows positive effects for classical music, though researchers don’t understand why.

13. Learn a musical instrument. It may be harder than it was when you were a kid, but you’ll be developing a dormant part of your brain.

14. Travel. When you travel (whether it’s to a distant vacation spot or on a different route across town), you’re forcing your brain to navigate a new and complex environment. A study of London taxi drivers found experienced drivers had larger brains because they have to store lots of information about locations and how to navigate there.

15. Pray. Daily prayer may help your immune system. And people who attend a formal worship service regularly report happier, healthier lives.

16. Learn to meditate. It’s important for your brain that you learn to shut out the stresses of everyday life.

17. Get enough sleep. Studies have shown a link between interrupted sleep and dementia.

18. Eat more foods containing omega-3 fatty acids: Salmon, sardines, tuna, ocean trout, mackerel or herring, plus walnuts (which are higher in omega 3s than salmon) and flaxseed. Flaxseed oil, cod liver oil and walnut oil are good sources too.

19. Eat more fruits and vegetables. Antioxidants in fruits and vegetables mop up some of the damage caused by free radicals, one of the leading killers of brain cells.

20. Eat at least one meal a day with family and friends. You’ll slow down, socialize, and research shows you’ll eat healthier food than if you ate alone or on the go.

I had signed up to be a school volunteer…

– Howard Sieplinga

I had signed up to be a school volunteer and was helping a first-grader with her homework. But it turned out I was the one in need of help. The assignment required coloring, and I’m color-blind — can’t tell blue from red. As we finished our lesson, I told the little girl, "Next week you can read to me."


Looking confused, she said, "Can’t you read, either?"

 

Warmly………David

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What is Lewy Body Dementia?

The following is extracted from the Lewy Body Dementia Association website:

Lewy body dementia (LBD) is a progressive brain disease and the second leading cause of degenerative dementia in the elderly. The clinical name, “dementia with Lewy bodies” (DLB), accounts for up to 20% of all dementia cases, or 800,000 patients in the US. Over 50% of Parkinson’s disease patients develop “Parkinson’s disease dementia” (PDD), which accounts for at least 750,000 patients. (PDD is also a Lewy body dementia.)

Other names for the Lewy body dementias are:

  • Lewy body disease (LBD)
  • Diffuse lewy body disease (DLBD)
  • Cortical Lewy body disease (CLBD)
  • Lewy body Variant of Alzheimer’s (LBV)(LBVA)
  • Parkinson’s disease with dementia (PDD)

In the early 1900’s, while researching Parkinson’s disease, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain’s normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking, and behavior. Lewy body dementia exists either in pure form, or in conjunction with other brain changes, including those typically seen in Alzheimer’s disease and Parkinson’s disease. 

Horn of Plenty

–Mark L. Madden

When a music student brought his French horn to my shop for repair, he complained that the instrument “felt stuffy” and he couldn’t blow air through it. It’s not unusual to find partial blockages in brass instruments if small items get lodged in the tubing, but when I tested the instrument, the horn was completely blocked. After much probing and prodding, a small tangerine dropped out of the bell. “Oh,” said the musician when I handed him the fruit. Seeing the bewildered look on my face, he explained, “My mom used the horn for a cornucopia in a Thanksgiving centerpiece.”

 

David

“My Pioneer Woman” by Lynn Dougherty

 

Lynn's Mother's Birthday December 2004

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 87th 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

 

My to Do List on Reading Books — Alzheimer’s Disease, Lewy Body Dementia and Other Dementias

 

Today I am reading and reviewing books on Alzheimer’s disease, Lewy Body Dementia (LBD) and all other types of dementia.

"Life in the Balance"I’m currently reading “Life in the Balance” by Thomas Graboys, MD. Although it is not a thick book, I am having difficulty reading it. Not because I can’t concentrate on it. Maybe because of the emotions it is invoking in me. My feelings range between anger, pity, empathy, sorrow, sadness and respect. None of these really stand out. But they are there nonetheless. It is one of those books that I can only digest a few pages at a time and then I need to put it down. I will figure those feelings out though. I certainly has taken courage for Dr. Graboys to speak out so graphically and profoundly. Keep it up, Dr. Graboys!

Could it be Dementia?

Could it be Dementia?

What a pleasant surprise! I received a complimentary copy of the book “Could it be Dementia“? authored by Louise Morse and Roger Hitchings. I’ve only perused it briefly but it promises to be a practical yet powerful book which offers hope for those affected by dementia. The reviews look spectacular! This book insists that losing your mind doesn’t mean losing your soul. “Perhaps the greatest encouragement, for residents and carers alike, is seeing the Holy Spirit at work in His people,” say Louise and Roger. “In a worship meeting, someone who normally does not speak will unexpectedly pray the most cogent, appropriate prayer. In countless other ways the Holy Spirit is seen to be present with God’s precious ‘aged pilgrims’.” This book offers information and reassurance gleaned from the extensive experience of Pilgrim Homes, a foundation going back to 1807 that has helped and cared for thousands of elderly people.

Another sighting is from Helene Moore who wrote “Behind the Mask.” It is just another of many books which I’ve come across online which seem invaluable for readers. Now it’s a matter of finding the time to read them all!

Behind the Mask

Behind the Mask

 

              Warmly,

              David

Monday November 3, 2008

 

 

Dear Blog….

 

I received many emails and birthday greetings yesterday and today. I wish I could answer all of them in person but that’s impossible. I appreciate all of them. They’ve all meant a lot to me.

 

However, I got one email which was disturbing. It was a happy birthday wish but it also said, “Enjoy it while you can because your Lewy Body Disease will catch up with you very soon and you will be dead in just a few years. It goes fast you know. This could even be your last birthday.” Now, I really don’t know how to handle this one. Very uncanny. I had just started to read Dr. Thomas Graboys’ book, “Life in the Balance” yesterday afternoon. Reading about the severity of his illness and then opening up that email about an hour later wasn’t good timing. I think the writer probably meant well but I don’t think it was probably thought through to realize the negative impact it had on me. But the optimist in me has already started to overcome that. I’ve learned to expect most anything when dealing with people. Basically, I like to think people are good. Maybe it’s just that I’m too sensitive right now and took it the wrong way. I’ll just move right along, though. And Pam is very optimistic too. She tells me I will live many many long years! That helps a lot, believe me.

 

Speaking of Pam. She and I had our regular primary care Dr. visit today. She’s been tired and lethargic for sometime now but it’s been getting worse. She is so fatigued that she can hardly move and she sleeps alot. Low and behold, she is deficient in potassium, iron and vitamin D. The vitamin D level was real low. No wonder she’s tired. So she came away with a hefty dose of potassium, iron and a new preparation of 1x/week vitamin D…I think 50,000 units. So I help all this stuff begins to help her soon.

 

Dr. gave me some samples of Enablex. Since I don’t have any other symptoms consistent with diabetes or prostate disease, she’s not totally sure if the frequent urination is part of the Lewy Body Disease or not. One of it’s claim to fame is that it isn’t supposed to affect the central nervous system. Hope it works. Getting up 4-5 times/night is a pain. And I need good sleep to stay alert.

 

Got to thinking today. I miss working with Howard and George in the Medical Director’s Office. They are 2 of the finest, conscientious psychiatrists I know. Hope they are doing well. Howard works so hard but I keep telling him that he needs to retire and to enjoy life. George is enjoying life since he’s now retired. We used to work sooo hard together but had fun laughing and joking at the same time. I think it kept us sane. Thanks, guys. Hope you’re both doing well.

 

Tonight is Monday, time for the LBD chat on Yahoo. I’ve tried to get into the chat room for a couple of weeks but to no avail. I’ll try again tonight and see what happens.

 

Thanks to everyone who sent the uplifting and encouraging emails……….

 

Trivia which I learned today:   Maine is the only state whose name is just one syllable.

 

I’m having all kinds of thoughts and feelings as I read Graboys’ book. Will be writing them down soon.

 

David

Sunday November 2, 2008

 

The 60th today. A quiet sunny fall day today opening birthday presents from Pam and Chad. Thank you both!

 

Stunned! How did I miss it? Used to be on top of this stuff. It wasn’t until yesterday that I realized that the end of Daylight Saving Time was this weekend. I thought it was last week. Since the computer and my atomic wrist watch automatically change time in the spring and fall, I just thought I was adjusting well last Sunday with the change of time. I still can’t believe it. It might not seem a big deal to a lot of people but to go a whole week thinking the clocks had been changed. I’d like to just chalk it up to getting older. And maybe that’s all it is. Just a trick my brain played on me. But no use in analyzing it too much…it happened and I’ll move on.

 

Today is the big 60 for me. My first birthday which I am aware that I have Lewy Body Disease. Last year after the diagnosis, I just don’t remember at all. But I still emotionally feel like I’m in my 40s. My brother, Paul, and his wife, Sharon, came to visit us yesterday along with my niece, Tasha. Paul is an Assembly of God Minister in Beaver Falls, PA. and Sharon is the Coordinator for the Women’s Missionary Council for the Pennsylvania-Delaware Assembly of God District. Tasha just graduated from Central Bible College. (Hey…any single guys out there looking for a beautiful red-head!!?? But you have to go through me first. Smile, smile.) And Nick, my nephew, is the Pastor of Church Planting & Development at Allison Park Church in Pittsburgh, PA. Thanks you guys! You are the 2nd to visit our new little retirement home. Tash, thanks for the game, Apples to Apples. I never heard of the game before but playing it was a great way to spend an afternoon with family on a nice fall day. For some reason, even with family, I felt embarrassed and little ashamed whenever I had a little trouble getting a piece of turkey off the main plate. Just whenever I think the tremors are gone, they quickly and surprisingly take me off guard.

 

And yes. My birthday wish was for a copy of Dr. Thomas Graboys’ book, “Life in the Balance.” It is about a physician’s memoir of life, love and loss with Parkinson’s Disease and Dementia. I can’t wait to start reading it today. Thanks, Pammie!! I have to be truthful. I am excited to read Dr. Graboys’ book but at the same time I think I’m dreading to feel many of the emotions which will creep in as I read the book. I suspect it’s one of these readings that I’ll have to put down and pick up frequently. But I’m ready. It’ll be another growing experience.

 

I used to think 60 was very very old. Of course, now I don’t. I used to poo-poo my past birthdays. Now I cherish today and appreciate all the memories and experiences over the past 60 years. When the time comes when I won’t be able to read my daily musings on the blog, I think it’ll help to have Pam read it to me over and over again.

 

Pam, I’m worried about you. I’m glad you’re seeing the Dr. tomorrow. Low potassium, low iron……….no wonder you’re tired!!

 

David

Monday October 27, 2008

     

Be bold and courageous. When you look

back on your life, you’ll regret the things

you didn’t do more than the ones you did.

 

 

I came across this on the Merck website today. Can’t believe how good it is. It lists all the types of dementias and the differences between them. I never gave much thought about there being a marked difference between vascular dementia, Alzheimer’s Disease and Lewy Body Dementia. Thanks to Kat on the Dementia Rescue Early Onset Yahoo group for prompting me to look this up.

 

 

There’s a saying I learned in training — “Who they were is still in there somewhere…” I think about this a lot of the time. I find it almost impossible to visualize ever being in a nursing facility (denial???), but if I were I think these would be some of the things that I’d like for someone to do:

 

 

 

Make an extra effort to show me you love me and care about me

 

care package

 

An extra telephone call

 

Maybe a plant or some flowers

 

Send a card anytime

 

 

 

 

I may not totally understand what those gestures would mean, but the David in me would still be there inside me and still remember about good old-fashioned TLC!

 

 

David

 

Sunday October 26, 2008

 

 

Now you can understand my email address!

Check out the new category at the top of the page. It describes another side of me other than just being a physician — The Knitting Doctor.

I think knitting is one of those things I’ve always done which may have helped me more than I’ll ever know. Maybe it actually prevented me from developing Lewy Body Disease early on! It’s one of those visuospatial crafts which stimulates a certain part of the brain. And each and every craft works on a different part of the brain! So, get out the needles, the hooks, some thread, some yarn or some rope! Yes, rope. Making knots for all those boats and ships……..yes, they help to keep the brain active!

The little picture here is from Beth Brown-Reinsel’s book calledKnitting Ganseysshown on her Knittingtraditions website. I made this about 3 years ago for my nephew in New Hampshire. Ironically, his looks are very similar. I remember well having tremors at the time but I kept plugging along with the sweater just thinking that I needed to relax more. Little did I know Lewy was snaking his way in and I didn’t even know it. That is the time that I was the moderator for the Gansey List on Yahoo. 

For years, I knit on a daily basis. It was good for me. But………knowing what I know now………..I should have also been doing other hobbies and crafts along the way. Since each activity stimulates a unique portion of the brain, I had only been working on one of them. But this part of my brain is probably over developed since knitting is second nature to me. For the past 1-2 years, though, I lost some interest in knitting. Guess what? Yes, I just thought it was stress since I didn’t feel any depression. Looking back, I blamed every one of my symptoms of LBD to ‘stress.’ How pathetic that I didn’t know any better. But then no one around me did either. I now realize that I was suffering from apathy, a common symptom of dementia.

Since I’ve been on the Aricept and the Namenda, the apathetic days are fewer and fewer. I’ve been able to resume knitting but not as intensely as in the past. I am currently working on a pastel green reversible cable baby blanket. Big deal! Well, actually it is. I’m very happy that I can now knit again and look forward to continuing to do it for many years to come.

However, David, don’t get to complacent. There are other crafts and 120 other ways to increase my brain power. Let me think now. I’m able to resume the computer again…..another ingrained activity. I should probably review my Spanish which I learned during the 4 years living in Guadalajara, Mexico. But there isn’t anyone around here who speaks Spanish. I could review it on the web but it just isn’t the same as speaking another language in real life. Think now. You’ve added various puzzles to your list of new activities, thinking out loud with this blog. Guess I’ll take a look at that 120 list and see what might interest me. But, be careful. Don’t bite off more than you can chew. You have a tendency to want to do so much but then you get tired and feel guilty whenever you don’t immediately follow through with your own expectations.

Margo and Stein………….you guys were a breath of fresh air yesterday! Thanks for visiting us. We love you guys. You and your family have been a Rock of Gibraltar to me over the years. Margo, I remember so clearly the first time we met. I wanted to interview you to be my administrative assistant when I opened up my private practice right out of residency training. It seems like this past week but it really was in 1982. That’s why you still seem so young to me. Happy Birthday this week. You are still in your 40s to me. You hold your age of 70 uncommonly well!! You’re so energetic, vibrant and full of life! I used to think that 70 was ‘old.’ Now I know better.

It’s been a quiet low key day today. atching football, knitting and playing with the dogs. Pam is tired. We just found out that both her potassium and iron are both low. I’m worried about her. I remember when the joke was just to give someone some “Geritol.” I don’t know if they even sell that stuff anymore. Those were the days~~

Enough for today.

David

Wednesday October 15, 2008

Never take action when you’re angry or hungry.

 

 

 

I found this chart on the Merck Manual Medical Library site. I think it shows the clear and concise differences between Alzheimer’s Disease and Lewy Body Dementia. 

 

 

Differences Between Alzheimer’s Disease and Lewy Body Dementia

Feature

Alzheimer’s Disease

Lewy Body Dementia

Pathology

Senile plaques, neurofibrillary tangles, and β-amyloid deposits in the cerebral cortex and subcortical gray matter

Lewy bodies in neurons of the cortex

Epidemiology

Affects twice as many women

Affects twice as many men

Inheritance

Familial in 5–15% cases

Rarely familial

Day-to-day fluctuation

Some

Prominent

Short-term memory

Lost early in the disease

Less affected

Deficits in alertness and attention more than in memory acquisition

Parkinsonian symptoms

Very rare, occurring late in the disease

Normal gait

Prominent, obvious early in the disease

Axial rigidity and unstable gait

Autonomic dysfunction

Rare

Common

Hallucinations

Occur in about 20% of patients, usually when disease is moderately advanced

Occur in about 80%, usually when disease is early

Most commonly, visual

Adverse effects with antipsychotics

Common

Possible worsening of symptoms of dementia

Common

Acute worsening of extrapyramidal symptoms, which may be severe or life threatening

David

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