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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Journal Introduction

This journal is an account of our family's experience after our mother became ill with Lewy body disease. It was written by two of Mother's children, with input from the other two. (For purposes of clarity, the son who accompanied Mother and Dad on doctor visits is referred to as Son.)

Documenting our mother's decline has not been an easy task. Plus, we want to maintain our family's privacy. Nevertheless, we thought that writing this journal was important. Knowledge is invaluable. As hard as it might be, reading this journal can help families learn what to expect when a loved one is diagnosed with Lewy body disease and how to care for that person, particularly if you choose to care for the person at home. Our family has gone through many of the challenges you will face. We hope you can learn from what we went through.

A second goal of this journal is simply to make Lewy body disease better known. Everyone knows about Alzheimer's disease, but most people haven't even heard of Lewy body disease, despite the fact that it's the second most common form of dementia. We hope this journal will help make people (including health professionals) more aware of the disease.

Mother passed away in May 2006. This journal chronicles our experiences from early in her illness (1997-98) until then.

Journal Contents (How To Proceed)

You can start reading the journal by clicking the title of the first section below, or continue where you left off by clicking the appropriate section title. Remember that more sections will be added in the future.

  1. Who Mother Was
  2. First Hints of Trouble
  3. The Signs Become More Pronounced
  4. Back to the Neurologist
  5. Aricept and Mother's Quick Decline
  6. Columbia Presbyterian Hospital
  7. Dr. Jekyll and Mrs. Hyde
  8. Living Arrangements and Daycare
  9. We Need Aides
  10. Things Get a Bit Worse
  11. The Wheelchair Ramp
  12. "I Want to Die"
  13. Hygiene and Dental Care
  14. Slow Decline Continues
  15. Living Will
  16. Coping
  17. Future Concerns
  18. The Wound Doctor (April 2003)
  19. Various Problems (August 2003)
  20. Stasis (May 2004)
  21. Little Change (May 2005)
  22. The New Doctor (March 2006)
  23. Final Days (May 2006)
  24. In Memoriam (May 2006)
If you'd like to get the whole journal for printing, you can download it as a PDF file (88K).
In that case, you'll need Adobe Acrobat Reader to read or print the journal.
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