Learning About "This Thing" - Lewy Body Dementia

Patient Expert

I recently had reason to think about my days as a newspaper copy editor. I remember the joy of the well-crafted sentence, the challenge of writing clever headlines, and - most important - the breadth of knowledge covering local, regional, state and national topics.   Those days are many years in the past (and my writing is no longer spare, but that's what graduate school will do to you).

But it all came back to me today when I read "Before I Forget" in the March 2011 edition of O-The Oprah Magazine. In the article, Beth Macy recounts her interactions with Lynn Forbish, a once-feared copy editor at the paper where Macy used to work, who suffered from Lewy body dementia.   Macy wrote about Macy's special request: "'Write my story - before I forget it,' she tells me. 'This thing that's"damn"this thing.' She can't conjure the word. 'People need to know about this thing. Because so much of this is"it's wrong.' Lynn is no longer the terror. 'This thing' is the terror. And as she has been about so many things before - before the Lewy bodies started to nibble away at her neurons and commenced turning them to goo - the Queen of the Copy Desk is right. People need to know."

So let's learn about "this thing."

According to the Lewy Body Dementia Association, Inc., this disease affects approximately 1.3 million individuals in the United States. This type of degenerative brain disease shares traits with Alzheimer's and Parkinson's, which leads to misdiagnosis since many medical professionals are not familiar with the disease.   Lewy Body Dementia "is an umbrella term for two related diagnoses. LBD refers to both Parkinson's disease dementia and dementia with Lewy bodies.

The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain," the LBDA website states.   Symptoms include:

  • Progressive dementia. The person often suffers from deficits in attention and executive function. However, prominent memory impairment may not be readily seen in the early stages of the disease.
  • Fluctuating cognition. At times the person will be alert, but then will have sudden and acute episodes of confusion that may last hours or days. There is no specific time of day when confusion occurs (unlike Alzheimer's disease, when confusion happens around sundown).
  • Recurring complex visual hallucinations that are usually visual and often are more pronounced when the person is most confused. The person is not necessarily frightened by the hallucination.
  • Features of parkinsonism, such as changes in gait, shuffling or walking stiffly, frequent falls, body stiffness in the arms or legs, tremors, blank stare, emotionless look on the face, stooped posture, drooling and runny nose.
  • REM Sleep Behavior Disorder.   The person with LBD will move, gesture and/or speak during periods of REM sleep. There also may be confusion between the dream and waking reality when the person finally awakens. "RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD," the LBDA website states.
  • Sensitivity to anti-psychotic drugs. These drugs may cause the Parkinsonism to worsen as well as decrease cognition and increase hallucinations. Additionally, Neuroleptic Malignancy Syndrome, which is a life-threatening illness, has been reported in people who have LBD.
  • Viduospatial difficulties. Issues with depth perception, object orientation, directional sense and illusions may occur.
  • Autonomic dysfunction. The person may have blood pressure fluctuations, heart rate variability, sexual disturbances/impotence, constipation, urinary problems, excessive sweating, decreased sweating/heat intolerance, fainting, dry eyes/mouth and difficulty swallowing.
  • Psychiatric disturbances, such as systematized delusions, aggression and depression may occur.

Thanks to people like Forbish, who began having difficulties when she was 62, we are learning more about LBD. And articles like the one by Macy provide a way to remember and honor a vibrant woman who lived a full life, but who was claimed by LBD in 2010.