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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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3. The Signs Become More Pronounced

By late 1998 or early 1999, like Dad, we began to notice during our visits that Mother's behavior was "off." One early problem was that Mother's perception of time seemed to be off-kilter. For example, she would start to prepare dinner at 2:30 p.m. When we told her it was too early, she would stop while saying that it takes time for the food to cook. Half an hour later, she'd be back in the kitchen starting dinner again. Dad also reported that she would sometimes wake up in the middle of the night and begin to dress for the day.

"Now Mother took short, slow, guarded steps"
For Thanksgiving, 1998, for the first time Mother announced that she would no longer prepare the big dinner. When asked why, she said, "I've been doing it all these years and now it's time to pass the baton." This was reminiscent of her reason for retiring from her part-time job at the library ("I've been working all my life and now it's time to retire.") or for forgoing household chores she'd done previously ("I'm retired now."). By early 1999, we started noticing that Dad was the one who was mainly preparing their meals with Mother's assistance, instead of the other way around.

At about this time, Mother tripped on a staircase at home. While bruised, fortunately she wasn't seriously injured. Dad suggested that she use a quad cane he had. Mother liked the idea, but she had trouble learning the procedure for using it on steps. We also noticed that Mother's walking had changed. She had always been a strong walker, but now she took short, slow, guarded steps.

"Mother lost her ability to do math"
Furthermore, Mother had lost her ability to do math, something at which she had previously excelled. Mother was responsible for maintaining the checking account, but she could no longer balance the checkbook.

While we noticed these problems with Mother and saw that she was having some difficulties, we didn't want to believe it. After all, she had just been to a neurologist a few months earlier and she'd done so well on his tests.

In retrospect, there were other, even earlier signs. We believe that Mother suspected that something was wrong for some time before we had noticed anything, but she kept any concerns to herself. Later, it became evident that Mother had decided to retire from her job at the library the previous year because she realized that she was no longer capable of doing it. Her responsibilities there had included paying invoices and operating a computer.

There was also an incident a year before when Mother lost her balance in front of the post office and fell breaking her nose when she struck the ground. At the time, we thought nothing of it, but looking back, that fall (plus two others we remembered later) may well have been one of the first signs of the physical effects of Lewy body disease — problems with balance, stiffness of limbs, and difficulty walking.

In the years following Mother's diagnosis with Lewy body disease, we couldn't help but look back at some prior incidents and wonder whether they were early hints of a problem. Human behavior is so variable that it's impossible to know. With regard to Mother's falls, she was seen by doctors after each one and none brought up the possibility of a neurological problem.

2. First Hints of Trouble
4. Back to the Neurologist
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