Monday was my first day in a Georgetown Hospital research study of a drug so new it has no name, only numbers. It’s a double-blind study so neither the local research team nor I will know whether I’m getting the real drug or a placebo (25% chance). The drug is an antibody that is supposed to attack and dissolve the amyloid that gums up the synapses between the neurons in Alzheimer’s. The drug’s real effectiveness may not be so much in treatment of symptomatic disease like mine but more in very early Alzheimer’s, that is, decades before symptoms arise. It might even prevent Alzheimer’s if give early enough. And there’s the possibility that this study could even lead to a vaccine that confers life-long immunity to the disease! But that’s probably long after I’m dead.
Today was only the first day of five or six weeks of testing to see whether I even qualify for the study; but it’s already stirring things up for me emotionally. I suspect I’ll be writing a few posts over the next months as the study continues.
The emotional impact today came from the preliminary cognitive testing. The study is looking at the effectiveness of the drug in “mild” cognitive impairment. If your score is too low (too much cognitive impairment) or if it’s too high (too close to normal), then you’ll be excluded from the study.
What astonished me was that my results were so close to normal that I barely qualified for the study. I was stunned! I have lost so much of my thinking compared to several years ago, yet it barely registered on the tests. When I asked the nurse about it, she acknowledged that there were problems with testing “highly intelligent people” (her words not mine) who apparently have a “cognitive reserve” that allows for normal results on the usual screening test even in the presence of significant impairment and disease.
The testing had two parts. The first was a basic screening test used in neurologists’ office to indicate whether there’s any level of impairment at all. Because the study is double-blind, I don’t know the exact results (except that I barely qualified for the study). I believe I had a perfect score on the first test. The second one was more sensitive than the first and meant specifically for the memory loss of Alzheimer’s. My memory for the objects I had to remember was indeed terrible, and I’m sure that test made my score bad enough to qualify … yet I almost did too well, anyway. If I’m right that I had a perfect score on that first test, then I could have gone into a neurologist’s office with my current level of impairment, been given the appropriate screening test, and told there was no objective indication that anything was wrong.
It would have been utterly crazy-making! I know I’m significantly impaired. Getting lost, being unable to figure out spreadsheets (that I myself created several years ago), or making a $24,000 error in bookkeeping are not simply little exaggerations or deficits everyone has. If I were told nothing in was wrong, I would fear that I was imagining things, which would have frightened and isolated me.
So how could I be almost too normal to qualify for the study? Isn’t there something wrong with testing if it can’t recognize my level of impairment? Perhaps finding very mild impairment in “highly intelligent” people is more difficult, but it can’t be impossible. To avoid such crazy-making, it seems necessary to try.
On the other hand, the tests did, in the end, pick up definite cognitive impairment. With all the publicity and the number of people hitting this blog, my wife Marja has been concerned that I’d gotten too far out front with the public attention. “What if you don’t have Alzheimer’s?” she said "How embarrassing would that be?!!” But the research center tests confirm the diagnosis.
Marja is much relieved. Me, too.