For Life, Love, & Family

One Christmas card I received this year had a big impact. Some wags might call my cousin Chuck "a lady killer." In the card, Chuck holds his year-old grandson, who is, also, a very handsome young man. They both look into the camera with smiles and hope. A test to determine which family members carry the gene that causes early onset Alzheimer's in our family has been available since 1995, but, so far, Chuck is the only family member to take the test before symptoms of the disease appeared. Within a short time after finding he had the gene, his symptoms did emerge and he was forced to retire from his job. Since then, he has said, "I will not go to my grave quietly. I will speak out and try to make a difference, if not for myself, for my daughter and her children, and the children of others with EOAD ." Chuck's daughter does not know if she carries the gene. Chuck's darling grandson has the same chance of having the gene that Chuck had when our grandfather drove his truck in front of a train at Huntoon, Texas, and our grandmother was killed. Yet, no one is giving up the chance at life because of the mutation that happened, how long ago we do not know. Each generation of our family wants the chance for life, love, and family. All each of us can do is minimize the effects of the gene by doing what we can to further the research for treatments and a cure, and provide hope for the next generation.

Signs of Alzheimer's

The day before Thanksgiving, I get in the car to drive from East Hampton to Manhattan where we plan to have Thanksgiving with our son and some friends. I glance at the state inspection sticker on the windshield and realize it was due in October. Not wanting a ticket, I put the car back in the garage, call the mechanic and make an appointment for the inspection to be done on Saturday, and take alternative transportation in to the city. I wonder, how could I have skipped an inspection deadline? I'm usually on top of these things. Friday night, as I'm going to bed, I think: maybe I should place a note on the refrigerator door to remind me to take the car in. I dismiss as ridiculous the idea that I need a reminder. I get up the next morning, check my email, split some wood, have breakfast, and I'm more than halfway to noon when I remember I was supposed to have the car in two hours earlier. What is normal forgetting and what are the early signs of Alzheimer's? It is a question I have now wrestled with for more than 40 years.

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.