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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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17. Future Concerns

Mother's doctor continues to report that her heart and lungs are healthy. Until the onset of Lewy body disease, Mother had few health problems. It's now 2003, four years since Mother was diagnosed with Lewy body disease and over two years since she was able to walk. She is inattentive but occasionally responds when given a rousing "Hello, Mother." Sometimes, she replies with a plain "Hello," other times with a "Hello, Father" (regardless of who she's responding to). Recently, she responded with "Hello, Donald." (We don't have any relatives with that name.) On occasion, a stereotyped question such as, "I'm back, Mother; did you miss me?" will elicit a response of "Yes, of course." To other questions, she might nod her head or say a word or two. She is often inalert, so frequently no reply is made.

"Mother is dependent on others for all aspects of her care"
Mother is dependent on others for all aspects of her care. The major concern continues to be her ability to swallow food. She is still able to be fed by hand, but her food often has to be chopped into small pieces. Her eating has to be rated as her biggest problem.

Aside from our concerns about Mother, we have concerns about our own future. Will we contract this disease when we get older? Did we inherit a gene for it? No one knows what causes Lewy body disease, but it's hard to avoid having a fatalistic view.

"Any thoughts Mother may have had about her own future health clearly did not prevent her from leading a productive life"
We wonder whether Mother harbored thoughts like these herself. In old age her own mother had become ill with dementia. Back in those days, doctors didn't diagnose the kind of dementia like they do today, but Mother saw her mother decline. In the back of her mind, could she have had questions about her own future? If she did, she clearly didn't let them prevent her from leading a productive life. In that way, she provides a good example for us to follow.

All we can do is follow news reports about progress being made in understanding and treating Alzheimer's disease. We continue to hope that more attention will be given to Lewy body disease.

16. Coping
18. The Wound Doctor (April 2003)
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