Site Created 7/15/96 and last Updated on 04/15/02
Site Created 7/15/96 and last Updated on 04/15/02
Shirley was diagnosed in February of 1995 with "probable" Alzheimer's Disease. The diagnosis was later updated at the Mayo Clinic in May of 1995 to be "probable" Pick's Disease. Both are variations of a class of progressively degenerative neurological diseases for which there is no prevention or cure. Shirley was 50 years old when diagnosed, which is much younger than normal for Alzheimer's victims and is referred to as Early-Onset or Young-Onset. She died on August 1st, 1998 at the age of 54. She was cared for at home by her family throughout this period. These pages contain the family's journal and experiences while dealing with the illness. It is our hope that our experiences may benefit others following this same path.
- Touching the Leaves, Shirley's Journey through the Labyrinth begins the journal describing the onset, the early symptoms, the frustration in determining diagnosis, reality setting in, and final acceptance. Beginning in September, 1996, a journal entry was made periodically summarizing experiences and significant changes in symptoms, and coping methods used in dealing with Pick's Disease. Journal Last Updated 4/8/2000.
- "My Mom, My Child" - Nicole, while a college Sophomore at the time of diagnosis, offered her perspectives and feelings on losing her mother and close friend to this dreaded disease. Many times, in particular in the case of "early onset ", the children suffer in silence. Nicole also kept a brief Journal for several months while at the University of South Dakota which depict her emotions at the time of the diagnosis. Based on our experience and the love felt from friends and family, Nicole offers her suggestions for those that know someone caring for a victim of dementia in "Things You Can Do to Make a Difference".
- Community Services and Home Health Care Issues for Early Onset Families. A letter was written to the Mayo Clinic Alzheimer Disease Center Family Education department, describing our early experiences and attempts in Accessing Community Services, and Other Coping Methods. Now would be a good time to write your congressman and encourage him or her to work with the President to get meaningful health care legislation passed. Here we provide a sample letter written by us, and links to the White House and your Congressman e-mail addresses. Home Health Care Legislation - Write your congressman now!
- The Return to Innocence - Humorous Moments - As we care for our loved ones suffering from Pick's disease, Alzheimer's disease or other form of dementia, we frequently share experiences that make us smile or laugh. It is important to cherish these moments, as they are soon gone. Here we share some of the humorous experiences that we enjoyed with Shirley.
- Coping Techniques and Experiences - We share some of the techniques that we have used to cope with various symptoms of Pick's Disease and care requirements as they have appeared. Others and more detail can be found in the Journal itself.
- The Amalgam Controversy and Our Decision is commentary on our experience in exploring the relationship between Mercury poisoning from amalgam fillings in teeth, to Alzheimer's disease, and determining what action, if any should be taken with Shirley. Excerpts from a memo written by Kip Sullivan titled Evidence Implicating Amalgam in Alzheimer's Disease provide some of the scientific foundation for promotion of this theory. Kip, an attorney from Minneapolis, has himself recovered from an "incurable" illness after having his amalgam fillings removed. He has since become an advocate for making this treatment more readily accepted and available to others suffering from neurological diseases that might be helped.
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