It Feels Like Home

A Boston girl goes Hollywood then chucks it away for a life in OZ… these are my adventures and general musings.

A Week to Remember October 1, 2010

Some of my readers may or may not know, but my dear father has Lewy Body Dementia (LBD). I’m sure many of you are saying What? What is LBD? Well, let me educate you on this little known and widely misunderstood brain disease.

The best way that I can describe this terrible disease is that it’s like taking the worst symptoms from Parkinson’s Disease and the worst symptoms from Alzheimer’s Disease and put them together and you’ve got Lewy Body Dementia. It’s a crippling, progressive brain disease that cuts your life short and robs one self of the ability to think and communicate.

Unfortunately, this is an extremely difficult disease to diagnosis as there is no test you can take. A true diagnosis can only be given once an autopsy is performed. Often times, Lewy Body Disease is mis-diagnosed as Parkinson’s Disease or Alzheimer’s Disease. I’ve found there is very little information about Lewy Body Dementia- even in the medical community. Although this is the second leading cause of dementia in our seniors, very few people have ever heard of Lewy Body Dementia. LBD is tricky, too, because it’s often mis-diagnosed, however, LBDers are extremely sensitive to medication. Only certain medications can be given to LBDers or else a horrible reaction can occur sending one in to a terrible downward spiral. Many doctors think their patients are mentally ill, however, it’s not the case at all- it’s the incorrect medication interacting with the LBD.

For a more scientific description, the Lewy Body Dementia Association describes LBD as:

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.

There are many symptoms of Lewy Body Disease and the thing with LBD is that each person is different and experiences different symptoms. What seems to be common are the following symptoms:

  • Fluctuating cognition- variations in attention and alertness. Changes in their decisions, thinking, and memory.
  • Hallucinations- mostly visual but can also be auditory. They are often very detailed and life-like.
  • Parkinson’s like features- shuffling gait, tremors, expressionless face, stooped posture, etc.

The Lewy Body Dementia Association has good information about the core symptoms, supporting symptoms and detailed descriptions of each symptom. You can read more about it here.

This year, the Lewy Body Dementia Association has dedicated a week in October as “A Week to Remember.” From October 16-23, 2010, the LBDA, families and caregivers will come together and help raise awareness.

It’s how Lewy Body Dementia will come out of the shadows and into the public eye.

  • Awareness for the spouse whose “happily ever after” has been stolen away by LBD.
  • Awareness for the primary care doctor whose patient would benefit from referral to a specialist for a specific diagnosis.
  • Awareness for the caregiver that she is not alone.

Although we remain committed to increasing awareness about LBD 365 days a year, October 10-16 will truly be A Week To Remember, as the LBDA Family comes together to raise awareness and support across the country. We invite you to join us and countless others who will be participating in grassroots efforts like these, to name just a few:

Watch for more information on our website, and in e-mails like this one, in the weeks and months to come. To learn more about how you can stand strong with the 1.3 million families affected by Lewy body dementia, please contact us at We hope you will join us in making this A Week To Remember.

Remember, it all begins with Awareness.


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