Tuesday, November 10, 2009
How I came to write about Alzheimer's disease
During the years following the time my family learned that my dad and 9 of his 13 siblings had, or would develop, early onset Alzheimer's, I lived with such extreme internal consciousness of the disease we barely spoke of it. Then when Alzheimer's moved into the next generation, my generation, first my sister, then a cousin, then my brother, and more cousins, it was still difficult to speak of it openly. Despite the fact my Aunt Ester and I had talked several times about me writing a book to tell our story, it was not until I had grieved for my afflicted siblings that I was able to confront my own irrational fear, and my guilt and grief about having been spared. Two years ago I began writing "THE THOUSAND MILE STARE: One Family's Journey through the Science and Struggle of Alzheimer's." The odd thing I learned in the process is: although I did not inherit PS2, the early onset gene in our family with its 50/50 odds of inheritance, I did inherit one copy of apoE4, another gene that raises the probability of getting later onset Alzheimer's, so I now face approximately a 50/50 chance of having the late onset version of Alzheimer's within the next decade. I'm wondering, will my luck hold? I try to focus on the positive and comfort myself by saying, 80 is a lot different than 45.
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