Parkinsons and Diffuse Lewy body Dementia

[lchere]

Can someone tell me if Diffuse Lewy Body Dementia is a form of Parkinson's Disease or if it is a separate disease. My husband was first diagnosed with Parkinson's 2 1/2 years ago and this summer the diagnoses was changed to Diffuse Lewy Body Dementia. Either way, it is a tough disease to deal with.

[CarolynS]

This has been a rough year for you...I can hear that in your message. The only information I can share is what I can find online. I emailed Pegleg, who I know can share more. She is in NC at the moment. Hopefully, when she returns home Monday or Tuesday, she will share more.

Hopefully, someone else on this forum will also share what they know, or have experienced.


163


National Parkinson Foundation
http://www.parkinson.org/site/apps/s/content.asp?c=9dJFJLPwB&b=108269&ct=89696

Dementia Explained: Parkinson Disease Dementia, Lewy Body Dementia, Alzheimer Disease: Are they the Same? Or Different? Does it Matter?

By Abe Lieberman MD, 4/1/2002

30% of PD People Develop a Dementia.

1. PD dementia starts "silently" like PD itself. It evolves, or progresses, slowly, like PD.

2. PD dementia occurs in people age 70 years or over like PD that occurs in people age 60 years or over. There is, in general, but NOT for a specific person, a 10-15 year "lag" between PD and PD dementia.

3. PD dementia results from a loss of nerve cells in different regions of the brain: the cells are dopamine, or norepinephrine, or acetyl choline producing . Norepinephrine and acetyl choline are, like dopamine, chemicals that transmit messages between nerve cells and are called neurotransmitters.

Norepinephrine transmits messages in some regions, acetyl choline in other regions, and dopamine in other regions. PD results from a loss of dopamine cells in a region called the substantia nigra.

4. In PD dementia, the dying or dead cells contain Lewy bodies, round structures in a part of the cell called the cytoplasm. Lewy bodies appear in dopamine and norepinephrine cells. The Lewy body may take up most of the cytoplasm. It’s unknown, at this time, if the Lewy body is part of the process killing the cell. Or if the Lewy body is part of the process repairing the cell.

5. Rarely, in under 10% of patients, PD dementia begins before age 70 years. Infrequently, in under 10% of patients, PD begins before age 40 years.

6. Dementia may appear before, at the time as, or after PD. The dementia that appears before PD is also associated with Lewy bodies and is called Diffuse Lewy Body disease, or Diffuse Lewy Body dementia, or Lewy Body disease, or Lewy Body dementia.

The term Lewy Body dementia (LBD) is used by me because it says what it is: a dementia associated with Lewy bodies.

There’s a debate among doctors as to whether PD followed by dementia, or PD appearing at the same time or before dementia, is the same or a different disease. It’s estimated there are 100,000 people with PD dementia. It’s estimated there are 1,000,000 people with LBD: as many people with LBD as with PD. Is PD dementia, the same as LBD? I believe it is. Others disagree because:

A. When dementia appears before PD, when there are no PD symptoms, it’s difficult to say the dementia will evolve into PD. Just as there are PD-like disorders, disorders that resemble PD, there are "PD dementia-like disorders" (my term) and in the absence of PD symptoms, it’s impossible to know if the dementia will evolve into PD dementia or a "PD dementia-like disorder." PD-like disorders are less common than PD. 10-15 PD-like disorder patients for each 100 PD patients. PD dementia-like disorders are more common than LBD. PD dementia-like disorders include:

Alzheimer Disease, Alzheimer Disease with Lewy Bodies, Fronto-temporal Dementia sometimes called Pick’s Disease or Pick’s Dementia, and Vascular Dementia, a dementia resulting from multiple strokes

For every LBD patient there are 4 PD dementia-like disorder patients: 3 with Alzheimer disease and 1 with another dementia.

B. There can be differences on post-mortem examination between PD dementia and LBD. These differences may imply difference causes or mechanisms.

Note: There is discussion about the brain, as well as graphics at the link above.


163


Lewy Body Dementia Association
http://www.lewybodydementia.org/

Facts
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.


163


NINDS Dementia With Lewy Bodies Information Page
http://www.ninds.nih.gov/disorders/dementiawithlewybodies/dementiawithlewybodies.htm


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[pegleg]

Hi

Sorry to just now be getting back to you. Carolyn has found the resources that I was going to suggest, the Lewy Body Disease Association. Dr. Lieberman also has some excellent articles on it. As he points out, the jury is still out as to whether Lewy body disease is Parkinson's with dementia or a separate disease. Whatever it is, it is not a pretty picture.

Memory and cognitive skills suffer greatly with Lewy Body disease. It's also difficult to distinguish between Alzheimer's and Lewy Body disease. And there is no "proof" until you do an autopsy.

Here is another source of information:
http://websites.afar.org/site/PageServer?pagename=IA_feat25

[kak2]

Ichere--
Can you tell me how they were able to diagnose LBD instead of Parkinson's? My husband has been dxd with PD for 8 years, and has had fairly significant dementia for at least 3. Since the dementia was dxd so quickly after the PD, and he's only 54, he does not fit the profile of PD with dementia. However, the neuro says it is not LBD since the physical symptoms came prior to the cognitive. From what I see, the symptoms match those of LBD perfectly.
I don't know....I'm not sure it really matters since treatment is similar, but this sure isn't the PD that I see in most folks.
Can anyone else help out? You folks seem to do some excellent research!
Thanks
kak

[vlhperry]

I, like Carol, am also 17 years and counting. I also have a rare genetic form of Parkinson's Disease which does [B]not[B] cause Lewy bodies to form in the brain. Iron deposits are found deposited inappropriately, causing damage more pervasive than idiopathic Parkinsonism. If you have early onset Parkinsonism the chances of dementia are much lower. However, you are very likely to develop worse dystonia as opposed to tremors. You are also much more likely to be ultrasensitive to carpidopa/levadopa than those without the Parkin2 gene formations.

Parkinson's Disease covers alot of disorders in the brain. Is depression a cascading effect of Parkinson's or a symptom of Parkinson's Disease? How about anxiety, breathing difficulties, women still in menstrual cycles having difficulties getting meds to work at the start of their cycles, eye problems? Are all of these symptoms or cascading effects? Do all people with Parkinsonism share these symptoms or cascading effects?

These questions need to be answered in order to ensure the correct diagnosis of a patient with a neuropschological disorder at the molecular level before a cure or effective treatment options can occur. Patients must stop lobbying pharmaceutical and legislators for specific types of research and learn to trust the medical community to be the best judge as to how research funds should be spent. This type of "advocating" only hurts the majority of the patients they are trying to help. Those in the advanced stages require some funds be used to train all hospital staff the importance of giving their meds on time just as the Diabetes Foundation trained hospital staff the neccessity to ensure diabetics get their glucose shots when needed.

It is hard to admit and humble yourself to admit that even though you have a disease, your experience of the disease is not sufficient to recommend what is right or best for everyone else with the same diagnosis. Because right now no one knows exactly what Parkinson's Disease is. Only the medical profession has the statistics of all sharing the diagnosis; Parkinson's Disease.

Sincerely,
Vicky

[pegleg]

concerning Lewy Body Dementia

http://www.parkinsonresearchfoundation.org/index.php?option=com_content&task=view&id=367&Itemid=104

An excerpt is below:

PD dementia is also called Lewy Body Dementia (LBD). Hallucinations, especially vivid and dramatic ones are more consistent with a drug induced psychosis than LBD. The PD dementia or LBD like PD itself, evolves slowly, it does not start suddenly.

Symptoms of psychosis include:

* Apathy, loss of interest, inability to understand things which once were understandable
* Memory loss. Forgetting the names of his grandchildren is more than age related memory loss.
* Sleeping during the day
* Delusions. A belief in something with NO basis in reality.
* Paranoia. A belief that people are seeking to harm him

[kak2]

Thank you pegleg -- the information was very thorough. We have been through so many of these symptoms: delusions, paranoia, daytime sleepiness, apathy, confusion, forgetfulness -- the list goes on. We stopped ditropan and amantadine (except for 100mg) and reduced mirapex to 1.25mg -- but still the symptoms persist. Seroquel has helped, but it's so hard to sort out. Sometimes I think I just need to stop questioning and accept, but it's hard for me to do that.
Thanks for the info -- and for listening.
kak

[pegleg]

You may have to accept, but NEVER stop questioning!
(God bless!)
Peg