PHONE CALL WITH LEWY BODIES

David and Lida at Zoo

Late hour phone calls usually raise concern, particularly when you are a primary caregiver for a parent.  Muting the TV, I could tell from my wife’s side of the conversation that her mother, Lida, was agitated, worried, and particularly paranoid about something that evening.  After several minutes of trying to calm her mother, Kathy handed me the phone.  My tone of voice and joking nature usually put my mother-in-law at ease.  Most times she reverted into the sweet, southern belle that she was raised to be. That wouldn’t be the case tonight.

Lida was convinced something significant was occurring in our lives, and we weren’t telling her.  Kathy had already assured her that No! Our house had not burned down; both of us were fine; and neither of us was in the hospital.  But when she heard my voice on the phone, she launched into a verbal attack, accusing me of being pregnant and not telling her.  I tried to assure my normally sweet mother-in-law, who had spent 28 years as a public school teacher, that if I was pregnant, news of it would be on every TV channel and in every newspaper.  Sorry, but our marriage was not going to be producing any grandkids for her.

Lida wasn’t buying it.  Her Lewy Body dementia had complete control over her reason and thought.

An estimated 1.3 million Americans have Lewy Body dementia (LBD), an umbrella term that includes “Parkinson’s Disease Dementia” and “dementia with Lewy bodies”.  Lida also had Parkinson’s disease.

WHAT IS LEWY BODY DEMENTIA?

Friederich H. Lewy discovered abnormal protein deposits that disrupt normal brain functioning while studying Parkinson’s disease in the early 1900’s.  The effects of these proteins cause Parkinson’s symptoms as well as disruption of normal behaviors, thinking, and perception.

Lewy Bodies by co_patrick via Flickr

The central feature of LBD  is progressive dementia impacting attention and executive function.  While different in each sufferer, complex visual hallucinations and enhanced Parkinson’s symptoms involving diminished neuro-muscular control are symptomatic.  Sleep disorders are also common, sometimes manifesting years in advance of other symptoms.  Various psychiatric disturbances can also occur.

TREATMENT FOR LBD

Many individuals with Lewy Body dementia respond with great success to medications that minimize symptoms–at least initially–generally more so than those with Alzheimer’s.  Neurologists are having some success reducing sleep disorder behaviors and many forms of cognitive disorders for sufferers of LBD.  Patients also respond well to physical, speech, and occupational therapies, particularly during early stages.  Unlike Alzheimer’s, LBD by itself is not a cause of death.

UNPREDICTABLE SYMPTOMS

One of the many cruel aspects of Lewy Body dementia is that, for many, the symptoms are not always apparent.  During Lida’s last years, it was common to be able to have perfectly normal conversations with her. Her keen intellect was clearly evident–until it wasn’t.  Just when you were thinking that she was having a good day and was able to converse in a normal adult fashion, she would toss a screwball thought into the conversation that was totally inappropriate.

But then, often with a twinkle in her eye, she would smile at me and say, “I guess that was the Parkinson’s talking”, and my heart would melt.