Out of our minds

My husband has completed the medication portion of a clinical drug trial for asymptomatic people with Alzheimer's.

Medical charades. Sounds like? Feels like?

My husband John and I have just returned from an overnight trip to Medford, Oregon. Medford is in the southeastern section of the state, a five-hour drive from our farm in Ferndale, California.

The name Medford, historically, is a variant on the much older English surname, Mitford, which will excite other English majors, and send a ripple of fear through the National Funeral Directors Association. The American version of Mitford/Medford was first a town in Massachusetts, near the hometown of one David Loring, a right-of-way agent for the Oregon and California Railroad, who evidently had the privilege of naming what he acquired. Loring named the Oregon settlement in 1883.

Today, Medford—with its overlapping adjacent Central Point and who knows where else we didn’t have to learn to navigate—is nearing 100,00 in population. Its primary industry is health/medicine. MEDford. Oh, David Loring, didst the Goddess of Perpetual Irony light upon thee!

And MEDford is, of course, why this trip from which we just returned was our 18th in 17 months. If it were a movie, it would be a cross between The Leisure Seeker and Groundhog Day.

Every tiny difference in the trip is noted and discussed at length.

*The packaging on the Bulgarian yoghurt at Happy Market in Selma has changed; there is suddenly a full section of extraordinarily expensive cheese. And Bulgarian men instead of Bulgarian women are at the counter. I entered first, and John came in a few minutes later. The men didn’t speak to me; when John arrived he was all but physically embraced.

*The vicious political signs in the Applegate Valley have disappeared, and prim new, small, signs are posted outside a majority of households: Trump/Vance in a small rectangle, no longer a promotion, simply a need to be identified—what signs did we used to see, years, lifetimes ago, proudly displayed in front yards? High school mascots, registered dairy animals. Fresh Eggs. We Buy Mushrooms.

*”We just crossed the bridge where we had that two-hour delay during last year’s construction.” “Wasn’t that farther north?” “No, that wasn’t a bridge, that was a widening.” And so we become our own grandparents.

It’s our last supper on Eli Lilly—that’s the Big Pharma for which John is in a clinical study for a drug that the company hopes will significantly retard the effects of Alzheimer’s. John’s MRI showed that he had the plaque build-up—Alzheimer’s—but he had no symptoms¹. Exactly the profile Lilly was seeking. Big Pharma pays for dinner, so in these many months, we’ve done the town. We decide on sushi at Umi in Jacksonville. Our Airbnb is only four miles from the restaurant and we haven’t had sushi once in this journey. We get to the restaurant in eleven minutes, just as Google Maps promised. It took us an hour to get home. ²

We don’t talk much about the future of this clinical study, or of John’s disease. We don’t know if he’s been given the placebo or the real drug. What we do know is nearly a year of cognitive tests (on little dedicated notebook computers that Zoom only to cognitive therapists) still rate him as “asymptomatic.” These therapists—we’ve had two so far—ask me questions outside of John’s presence. He then comes in—I leave—and the therapist asks him questions based on my “story leads.” This testing will take place two more times over the next year, and then—if all the participants in our group for this study have completed all phases of this test—the reveal!

This reveal doesn’t involve balloons, pink cakes, or blue stuffed eggs. This one is: you had the drug or… you didn’t.

We have always known that if John took the placebo, he would be offered the drug at no cost ($0 compared to about $50K)—but, of course, if that is the case, he’ll already be another 12-24 months along the way.

On this trip, however, we learned that the offer remains, but the administration of the drug will be the same: we will go to Medford, starting with blood tests and MRIs, the whole banana, detail for detail, except the drug will be real. Why? Why not just have it prescribed, let us run into Ferndale’s Open Door and have the lab lady stick the needle in? We can always trek to Arcata for good sushi.

Because this particular drug for asymptomatic Alzheimer’s patients has not been approved by the F.D.A., and most likely won’t be for several years, because it takes a long time for approval. The process must follow strict protocol and produce additional results.

Now, I can’t think about 17 more trips to Medford when we’re two years older. We’ve miraculously dodged fires and snow thus far, what are the chances of being that lucky in another round?

I’m sharing these details for many reasons, the most important of which is:

Alzheimer’s is a disease. It is not a crime. There is no more reason for shame if a disease is in the brain than if it were in the kidneys.

We are all old enough to remember women in the generation ahead of us who died of breast cancer because they were too embarrassed to check for symptoms, or, having found a lump, to tell anyone, or to go to the doctor (always a male in those days).

There is little dignity in disease, as there has been little dignity in most aspects of our lives—my list is long; make your own—and yet, here we are, fed and clothed and loved and laughing. We face losses far beyond our failing bodies; we know it is unlikely grace and compassion will triumph in our abbreviated lifetimes.

But grace and compassion can triumph in us. That’s a choice no one can take away.

******

1. And still doesn’t, or does he? Or do we both have it, and his is just slightly worse? I remember names faster but he doesn’t leave his bank card in an apron pocket and take us to the brink of financial ruin.

2. I was driving, in the dark, on a narrow country roads. At one point, the GPS said I was 1.4 miles from our destination (the Airbnb), and the estimated time to get there was 61 minutes. See footnote above. Again.