05 Mar Self-Inflicted Misery for a Worthy Cause
Eight years ago, I decided to volunteer for an Alzheimer’s study that annually assesses subjects’ memory and thinking skills and tracks the data over a period of years. I volunteered because I wanted to contribute to Alzheimer’s research as well as discover early if I were showing signs of cognitive impairment. With a mother and grandmother who had suffered from late-onset Alzheimer’s, I knew my risk was greater.
Although there has been research on possible biomarkers such as a blood test, which might act as an early warning system, not everyone wants to know she has a disease for which there’s no cure. Failed drug trials have only shown what doesn’t work, although there have been hints that subjects less afflicted might have better luck. Once the neurons in the brain have been ravaged by the disease, the process is unlikely to be reversed. I say “unlikely” because miracles may be possible for future generations. For now, finding out early in the process affords the opportunity to enter a drug trial and hope for success.
I don’t look forward to my annual neuropsychological testing. At first, I was lighthearted and told friends I was a control in the study. Now that I’m over seventy, my lightheartedness has changed to gallows humor. Before the actual testing begins, I have to make a self-assessment by answering a series of questions about my memory and capabilities as compared with last year and five years ago. My husband is my study partner, which means he’s interviewed separately about his perceptions of my abilities and any changes he sees.
For a week or so before our appointment, my husband uses his upcoming interview as leverage. If I don’t let him recline on a divan while I fan him and drop grapes into his mouth, there will be hell to pay. I don’t need any help cranking up my anxiety, but if I protest, he assures me he’s there for me.
The test itself is administered by someone young, which makes me feel like an elderly matron before I even start. I am only slightly soothed when I’m told the test is designed to be hard enough that no one can answer all the questions. I think back to the SATs when I was told the same thing. At least then, I got two hundred points for signing my name.
The test seems exactly the same to me each year, which ought to be a comfort. It starts with a brief story full of facts and numbers, which I’m then asked to repeat back. I also have to repeat them back fifteen minutes later. In spite of my familiarity with the story, I have the feeling I’m omitting some detail. So much for comfort. The impassive interviewer reads the instructions for each part of the test in a robotic voice, which, about an hour in, makes me wonder if that person actually is a robot.
I recite unrelated words back after a list is read to me, reproduce complex geometric shapes I was shown earlier, repeat ever longer groups of numbers, first forward then backward, find changed details in a series of drawings, and connect dots without lifting my pencil from the page. At the end, the robot smiles and thanks me, and I feel ready to check myself into the nursing home across the street. I remind myself why I’m participating in the study and head over to the mall to console myself by purchasing something that costs more than I should be spending.
Every year, for eight years, I’ve received a letter of feedback a month after the test. My score is reported as normal for my age group. As I grow older, I’m sure they are moving the goal posts, but I don’t care.