The crème de fleur from Au Bon Pain.

Posted on April 14, 2011 by

Poke, Prod, and Pizza

Thanks to the U.S. Government seeing its way clear to not shutting down last week, Jeff and I will proceed, on Friday, to the NIH for part 2 of a PET scan study on inflammation and its role in variants of Alzheimer’s. This will be the second time we’ve plunged brain-first into the world of clinical research, and most likely the last.

Our first adventure involved Jeff’s being the recipient of a trial vaccine, meant to break down amyloid plaque. Though we always hope to be one of the essential cogs in the wheels of progress, in the case of that particular drug the whole concept was a bust, with the primary result that Jeff became ineligible to be a blood donor for three years.

In our current study, there is no drug at all–the purpose is an investigation into the nature or modus operandi of Alzheimer’s, and there is no therapy, effective or no, from which we could possibly benefit.

Do you wonder why I keep using the word “we?” I’m not the one getting poked and prodded. I haven’t taken a single needle related to these studies, and there’s no measurement based on any aspect of my physiology making a speck of difference in the data being collected.

But there’s got to be a “we.” Jeff’s not getting himself around the Washington Beltway on his own. Whereas I can waltz myself into a Red Cross center, hold out a vein, and offer a pint, enrolling an Alzheimer’s patient in clinical research is a two person proposition, and not one that occurs without due reflection.

It’s a question that bears asking: If it falls to me to remind Jeff of just what we’re doing each time the day’s agenda involves a trek to Washington, DC for another session with the white-coats, is he really assenting? Or is it just me jumping him through the hoops because I find it intellectually interesting?

A pair of patient advocates at NIH apparently had the job of teasing out the answer to those very questions at our first appointment. I’m pretty sure that between our two testimonies, Jeff and I managed to convince them that he is indeed a partner, and not my entry into the middle-age science fair.

And for now, it’s true. His processing speed may be a little poky, but after we’ve sorted out what we’re doing in the car (driving to Bethesda,) and why (because research is the best hope for the next generation,) Jeff is in full agreement and happy to comply. Although I’ve nixed another study offer which I deemed invasive and potentially bewildering, I am–for now–happy to be the other half of “we” as long as the day’s activities will be merely tiring and not traumatic.

And there’s this other thing about going to NIH–They’ve got some mighty tasty rolls called “crème de fleurs” at the Au Bon Pain in the atrium lobby. Got to have your goodies. Then, after last week’s lengthy and exhausting introduction to being an NIH subject, we grabbed an early dinner at Matchbox Vintage Pizza in Rockville.

“Nice day,” said Jeff, as we climbed back into the Subaru.

I was intrigued. “What did we do?” I asked with a chuckle.

“Took a drive, got some food,” he replied.

For the moment, his mind was free of and untroubled by the long day of being a guinea pig, but his stomach was happy. All that, and we were a cog in the wheel, if only a tiny one.

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  • AlterBlooms said:

    "Hi Emily, I just wanted to say how wonderful it is that you both partake in this journey. Our Dad age 67 has had ALZ for over 9 years. It's sad and hard but we can still hold his hand and he loves to laugh. We take comfort in the small things and let our relationship evolve with all of his changes. Blessings to you, The Alternative Blooms girls from Canada".

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