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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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2. First Hints of Trouble

The first hints that Mother was ill were subtle and easy to dismiss, even by professionals (indeed, they were dismissed). That they were signs of illness became apparent only in retrospect. We took Mother to a neurologist for the first time after she exhibited a troubling, albeit temporary, problem. This was in late 1997 or early 1998 when she was 70 years old.

"While reading a passage out loud, the words on the page looked funny"
The incident that precipitated the first visit to a neurologist occurred at the weekly book lunch held at the library, where the attendees swap book recommendations. Mother, who was a great reader, was leading the session. She was reading a passage of a book out loud to the assembled group when all of a sudden the words on the page looked funny. She continued reading without apparently knowing there were any other problems, until she looked up and saw the expression on the faces of the others in the group. It turned out that what she was saying was gibberish. In a few minutes she was fine and drove herself home. Mother's family doctor sent her to a hospital for an MRI brain scan and an ultra-sound of the arteries in her neck and arranged for her to be seen by a neurologist.

It was on this occasion that Dad told us for the first time that he already thought there was something wrong with Mother, that her behavior was "off" in some ways. Suspecting that she might be developing Alzheimer's disease, he hoped that the neurologist would test Mother's memory. The neurologist, however, did not do so. In retrospect, the neurologist may not have been very good. It was also the case that, despite Dad's concerns, Son, who accompanied Mother to the neurologist, didn't ask the doctor to test her memory. On his visits home he'd never seen any problems, and frankly, he didn't know how to bring up the issue in front of Mother. The neurologist determined that Mother's MRI was normal for someone of her age, and he performed a rudimentary physical exam, which found no problems. His diagnosis was that Mother had had a TIA (transient ischemic attack), a temporary neurological problem that was not necessarily a harbinger of future problems. He agreed with the family doctor's prescribing of Plavix, a mild blood thinner. We let it go at that, and Mother was obviously greatly relieved, since the incident at the library was so disturbing for her. Mother remained anxious about reading aloud in public and practiced occasionally for us. A couple of months later, she was happy to report that she had read aloud at a book meeting and everything went well.

Was the TIA an early sign of Lewy body disease? We don't know, but it seems likely that it wasn't directly related, because the disease later manifested itself so differently. On the other hand, it could have been a hint that not everything was right.

"Dad was concerned about Mother's uncustomary forgetfulness"
Mother's next visit to a neurologist (a different one) came in the fall of 1998. This time the visit was precipitated by concerns Dad had about Mother. He still thought her behavior was "off," and he had some anecdotes about uncustomary forgetfulness. For example, one day when the two of them were going to a lunch meeting, Mother prepared them a bag lunch of cheese sandwiches. When it came time to eat, they discovered that Mother had included slices of bread, but no cheese. He also remarked that Mother had abandoned her needlework hobbies. At this point we children hadn't seen any signs of problems. The only possible change was that when we came to visit for the day or for the weekend, Mother was unusually "clingy," that is, she wanted to be around us all the time.

The neurologist did a physical examination and administered the Mini Mental Status Exam, a short test of memory, language, and thinking. Mother made no errors. Consequently, it was easy for the neurologist to disregard Dad's anecdotes as minor incidents of normal aging. As subsequent events showed, Dad was in the best position to notice that something was awry, and he was right.

1. Who Mother Was
3. The Signs Become More Pronounced
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