More notes from the world of research protocols...

Yesterday was about the closest I’ve come to giving myself a sharp talking-to about “dragging” Jeff into clinical research. I know, I put stupid quote marks on the word dragging. Because I can’t decide if it applies. I do not force, neither do I coerce, arm-twist, or hornswaggle him into participating. BUT, I do profoundly understand at this time that between the two of us, I do the thinking. If I think something is a good idea, I say so and he agrees. Likewise, for bad ideas. So, when it comes to anything that may have uncomfortable aspects, I have to do two things: Explain, such that he understands and can assent. And measure my grasp of his nature (altruistic) and current ability to tolerate bothersome procedures against what is likely to occur.

Because, truthfully, I don’t believe there are too many people with AD-like processes going on in their brains who are completely capable of making these decisions for themselves. Which leaves me to bear the responsibility if a day feels a bit too arduous. Yesterday at NIH skated pretty close to the too-arduous line.

I like NIH, as a site for research participation. As I’ve mentioned, the people are nice. They’re also very casual. About half of everyone has jeans under his or her lab-coat. The others wear scrubs. Our main doc-in-charge was off for the day (as were 3/4 of the other folks you’d normally see milling about. Friday may just not be a big day for government work. Even the Au Bon Pain had let their stock dwindle in anticipation.) Instead, we had a Nurse-Practitioner who introduced herself as Dr. Hyphenated-LastName (which I forget in its entirety.) “Were we expecting an NP?” I asked. “Oh,” replied Dr. N-P, “I have about ten degrees, including a doctorate.”

She also was sporting NIH denim-professional, and possibly had not combed her hair in two and a half days. Prior to the prep process, she asked Jeff if he had any questions. True to form, he replied, “What is the meaning of life?” “42,” I said, “You already know that.” But Dr. N-P had another lengthy response which led me to fear a full-gospel evangelization was about to occur. I don’t think she understood that Jeff was being silly. She, fortunately, stopped short of the religion-specific details of the meaning of life, but I sensed it was difficult for her.

But, Dr. N-P knew her way around a PET scanner, and that’s what really mattered. Actually, so did the other 5 or 6 people who were in attendance with varying degrees of attentiveness. This was the most well-attended PET scan I’ve ever seen. Actually, it’s the only PET scan I’ve ever seen, as Jeff’s diagnostic one, in ’07, had me in the waiting room. Not so at NIH. I was free to expose myself to radiation, so long as I knew what I was doing.

The things which added up to me second-guessing myself were basically these two: For this inflammation-measuring PET scan, an arterial line was required. An arterial line is inserted in (typically) the non-dominant wrist, and requires a local anaesthetic, plus a bit of immobilization, courtesy of a splint-like board. This was not sufficient to keep him from risking dislocation of the stop-cocks by waving his arm about, which meant that--at pre-scan bathroom time--I needed to keep BOTH arms (the other had the regular IV) out of trouble while dealing with all the jeans-zipper and undies concerns myself.

I would say, though, that the worst of it was 90 minutes of having to keep still in the scanner. That’s a long time for someone who forgets from one minute to the next that he’s not supposed to move his head. To help with this, a plasterish sort of mask is employed, as a reminder not to jerk about if you wake up from a doze, mid-scan. I still had to remind him. Many times. At 30 minutes left, I started an encouraging countdown, and (thankfully) we made it.

We will be returning in May for an MRI. I’m pretty sure the MRI is easier. At that appointment, we will also consider the option of another PET study which does not involve an arterial line. Let’s see how it goes.

Here’s the thing that always happens though--Jeff does not complain. He does not mind needles. He does not freak out. And--once they bring up the hockey-puck cheese pizza with green salad and two orange juices in tiny cups--he’s as happy as can be, and completely free of the sense that he’s been put through the wringer. So I will ponder. Research is valuable, and we’re doing what we can.