Every woman in my immediate family who manages to live to age 75 has developed Alzheimers disease. So far both my aunts and their mother died from ALZ. My mother is still alive, in a manner of speaking. She is 92. Her body has failed her by remaining healthy while her brain, for all intents and purposes, has died. She would hate what has happened to her if she was aware of it.
My sister and I have talked about this. The odds don’t look good for us. Actually they look better for my sister. She has two ApoE 3 genes while I have a 3 and a 4. ApoE stands for Apolipoprotein E. Now you know why it gets shortened. The ApoE gene makes a protein that has something to do with cholesterol and helps clean amyloid from the brain. The 3 is benign and does a good job of cleaning amyloid. The 4 doesn’t do as good a job, therefore those of us with the 4 are more likely to get the disease. It’s not a certainty but I still wish I didn’t have it. It appears to be unclear what, if anything, amyloid actually does so no one seems concerned about clearing it out.
With this family history, it’s no surprise that I was approached about a study. I fit into a group I wish I didn’t belong to, family history and one troublesome gene.
I have had my first meeting with the people running the study. Christine is a cheerful young woman with a research PhD. She went over all the legal stuff with me. She told me how the study would proceed. They want to test a drug that might reduce amyloid, thus, we all hope, blocking plaques and tangles forming in the brain. The theory is, starting such a drug in an at-risk population before anyone actually has ALZ, could delay or prevent onset of actual Alzheimers. It will be a double blind test, the gold standard. Neither patient nor administrating doctor will know who is getting the drug or the placebo for seven long years.
OK. I can live with that. I’m doing all I can to protect my brain; diet, exercise, general clean living…
But here’s the clincher. I would have to get a PET scan. So far, no problem, but if I have areas that show amyloid buildup, that terrifying marker of worse to possibly come, they would have to tell me. That is the question. Do I want to know?
Do I want to know? If it was the test for the breast cancer gene, no problem. I can live a long and happy life without breasts, ovaries and a uterus. There are preventive drugs. There are options.
There is currently no cure, no great treatment for ALZ. It is a long slow slide into the grey. It’s not so bad for my mom now. She has lived in the fog for fifteen years or more. My sister an I suffer for her. She is well cared for and seems OK.
The sadness, the terror, is carried by those close to her, who remember what she used to be. We know how much this accomplished, dynamic (and a little crazy) woman would hate what she has become.
So this is what I have to consider before I go too far in this study. Do I want to know?