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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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6. Columbia Presbyterian Hospital

Mother's appointment at Columbia Presbyterian was scheduled, and she was anxious about it. She knew her abilities had declined, but she was eager to do well on the tests she would be given. From her experience with neurologists, she knew that they were going to ask her certain questions, and for some reason she fixated on one of them in particular: she was determined to get the answer right when they asked her the date. A few days before her appointment, she wrote the date of her doctor visit on a slip of paper and put it in her pocket. Continually over the next few days, she'd pull out that paper to check the date, put the paper away, and then forget the date. It was very sad to watch.

"Mother was becoming lost in her own home"
By the time of her appointment, Mother was also becoming lost in her own home. Initially, this happened only at night when she moved around the house with the lights off. After getting up in the middle of night to use the bathroom, Mother sometimes ended up returning to a bed in one of her children's old bedrooms. On another occasion, instead of going to the bathroom, she wandered downstairs and urinated on a kitchen chair. Later on, she became confused even when the lights were on and during the daytime. For example, one evening while watching television with Dad, she went down to the kitchen for a bite, became confused, and phoned Son for help. She told him that she seemed to be alone in the house, which made him concerned that something might have happened to Dad. He had her hang up the phone and told her not to answer when he called back until the phone had rung six times. Fortunately, after a few rings Dad picked up and went down to rescue Mother. On another occasion Mother became disoriented in the afternoon and phoned the police for help.

At Columbia Presbyterian Mother went through a battery of exams and tests that took several days to administer. On her first visit, after taking her history, the neurologist recommended stopping the Aricept because of the problems we had associated with it. (Over the next two months while she was off the Aricept, she did not seem to change for the better or for the worse.) The neurologist saw her anxiety about not doing well on his memory tests and asked if she'd be more comfortable if her relatives waited outside. She said she would be, so we don't know how well she did, but by this time our expectations were low. In addition to the neurological exam, Mother had to have a battery of tests: extensive blood work, another MRI brain scan, a SPECT brain scan (to examine blood flow in the brain), and neuropsychological testing (a series of tests of cognitive functions, including memory, thinking, language, and visuospatial ability). The neuropsych testing was particularly trying for Mother, because it lasted for several hours and her poor performance made her feel bad.

"They told us Mother had Lewy body disease, and it had no cure"
After the doctors had examined all the data, they told us that Mother had Lewy body disease. They told us that it was a degenerative dementia with no cure. We had never heard of it before and were surprised because we had assumed she had Alzheimer's disease. We had some hope that the presumed Alzheimer's diagnosis was wrong and that Mother had a curable disease. Instead, the Alzheimer's diagnosis was replaced by the diagnosis of another, less well-known, incurable dementia. Mother's reaction to the diagnosis was interesting. She knew about all of the intensive research that had been going into Alzheimer's disease, so she said, "It's almost too bad it's not Alzheimer's disease, because they're learning so much about it."

The neurologist prescribed Aricept again, the medication for Alzheimer's disease, because that was the best they had to offer, although it was unclear how well it had been tested on people with Lewy body disease. He also prescribed a medication to treat the hallucinations and delusions Mother was beginning to experience. He prescribed Seroquel, but later on, another neurologist thought that drug would worsen Mother's motor problems. He recommended Zyprexa instead.

Being a research institution, Columbia Presbyterian also gave us a form describing an investigation they were conducting. The form asked if we'd donate Mother's brain post-mortem for analysis. Research is good, but this was a bit disturbing and Mother mentioned it a few times over the next week. One helpful piece of advice was to plan ahead, because this is a progressive disease, and to seek help when needed.

5. Aricept and Mother's Quick Decline
7. Dr. Jekyll and Mrs. Hyde
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