Saturday, January 29, 2005

It’s Still Ticking (Part XII)

Givin’ ‘em a “slice” of my mind...
Monday morning came early. But fortunately for me my normal sleep pattern, which usually resembles that of bear hibernating in winter, was on hiatus for the two nights Alex and I spent in Indianapolis. It was replaced instead by a quite uncharacteristic cat-like awareness, awakening me on the first ring of the wake-up call from the hotel desk. The good thing was that I wasn’t restless at all, but actually had a deep, restful sleep. Both mornings I sprang to my feet at 6:30, leaving Alex to sleep while I jumped into the shower. He was always up and at ’em by the time I got out however.

Mornings were always the best part of the day for my brother. After a good night’s rest, he was much more focused and cogent. As the day wore on though, he fatigued rapidly. Saraph had warned me of this prior to the trip, saying that stress makes him both physically and mentally tired on a much more drastic scale than normal. This would be particularly true during this time in Indy, as we were in circumstances that would be stressful for just about anyone; even more so for him.

Before going over to the hospital we enjoyed a good breakfast at the hotel’s buffet restaurant on the 2nd floor. The conversation was good between us, but spotty. I had been trying to downplay the fact that so often Alex would repeat something he had just said minutes before as if it were the first time he had announced it. However by this time I was almost surprised when he would go fifteen minutes without doing this.

After breakfast we strolled over to nearby IU Medical Center, precisely at 7:45 A.M., as per our instruction by Francesca, our IU contact throughout these proceedings.

A shot of Alex at the entrance of IU Medical Center on Monday morning, November 8, 2004, just before we embarked upon a grueling eight-hour day of medical and psychiatric testing.

When we arrived at the Alzheimer’s Research Center offices on the third floor, there didn’t seem to be anyone else around, save for the receptionist in her office behind the glass. I suggested Alex take a seat while I let them know that we were here. He noticed a table-tent display placard on the lamp table in the corner and sat down to read the brochure it offered. I didn’t really pay much attention to what the placard or the brochure’s title was, but seeing that he was now otherwise occupied I turned my attention to the woman behind the glass.

I explained who we were and that Francesca had told us that she would meet us here at 7:45, which was five minutes ago now. She said she hadn’t yet seen Francesca yet that morning and didn’t have any record of us being scheduled to even be there. However, not to worry, she would make a few calls to see what she could find out. I thanked her and turned back to rejoin Alex at the couch where he was now seated, feverishly scanning the contents of the brochure from the table display.

He was writing a series of bulleted notations on the back of a few of the several Law Office business cards that he always carried in his pocket. He used them to take brief notes, writing down things that he needed to remember. When were back at the airport in Dallas, he had pulled out one to show me the notes he had written to himself reminding him of the directions to his daughter’s Middle School, where he drove and picked her up each day. So I knew there was something in that brochure that apparently he deemed important. I casually walked over and stood beside him, looking down to try and see what he was writing.

He suddenly looked up at me with a dead serious expression, and exclaimed in his familiar staccato conversational style, “I got all these!”

Now of course I could easily blame what happened next on a number of things. As one might guess I was fairly distracted by everything that was going on: our being there in the first place, no one being there to greet us, and now, the receptionist not even having record of our visit even being on the departmental docket. My stomach was in knots. I really hadn’t read the display from which Alex had pulled the brochure he had been intently examining. I knew it obviously had something to do with Alzheimer’s Disease and I casually assumed that it was a list of suggestions to loved ones on how best to deal with someone afflicted with AD. I figured that Alex was taking notes to relate these points to his wife or others in some way.

Well if ever there was one, I at that moment became the personification of the old saying, “Never assume, because when you ASSUME, you make an ASS out of U and ME.”

When Alex looked up and said, “I got all these,” I replied brainlessly, “Oh…good,” thinking that he meant, “Hey, I was able to concentrate enough to get these several points written down.”


My brother’s look of seriousness quickly morphed into that of one who was looking at me as if I’d just grown a third eye.

“Whadayou talkin’ about, ‘GOOD?!’” he demanded. “This brochure lists the SYMPTOMS OF ALZHEIMER’S, and I’m saying that I’ve got EVERY ONE OF THEM!”

I was mortified. I instantly felt like the protagonist in one of those Southwest Airlines “Want to get away?” commercials. I apologized profusely to Alex, explaining my misconception. It took him a minute, but he was back to his usual, smiling self soon thereafter.

As is my habit when I’m nervous, I opted for pacing over sitting in the tiny reception area, but it seemed like only five minutes later Francesca appeared apologizing for her tardiness, caused by a traffic tie-up on the highway coming in from her home in the Indy suburbs.

Following handshakes and formal introductions, Francesca led us into the inner office area where we were joined by one of the program assistants. We then proceeded to a vacant room at the end of the hallway. Here Alex and I sat down and were handed clipboards with four or five multi-page information and release forms we were asked to fill out. This wasn’t surprising because of what I had previously known about IU’s legal liability policy for disclosure. The purpose of this visit was after all, diagnosis of my brother’s AD disposition, and will ultimately become mine as well.

As we sat, filling out the forms, both Francesca and her assistant continued to make small talk with us. We discussed the history of our family, our children, and various other topics. While it was a bit distracting, I had no trouble talking and writing at the same time. With Alex however, it was another story. Out of the corner of my eye I could see him in his chair about ten feet away fidgeting as he filled out his forms. The more the women talked it seemed, the more distracted he became. Finally he interrupted us and asked if he could go somewhere else to finish as he was having trouble concentrating. Francesca helped him take his chair out into the hallway and then returned. As we continued talking, I finished my forms and handed them to the assistant. Alex was still working away out just outside the door. At one point he called out to me and asked, “AJ…what’s today’s date?”
“November 8,” I replied.

Not more than a minute later he called out again, “Hey, can someone tell me what the date is today?”
“It’s November the 8th bro,” I again replied solemnly.

A pained expression fell over Francesca’s face as she and I made immediate eye contact. She then left the room to stand with him until he was finished.

After filling out the forms we were ushered into a nearby conference room for a brief meeting with Dr. Kimberly Quaid, the lead research geneticist for IU’s Alzheimer’s department. Francesca had arranged the meeting with Dr. Quaid to answer my questions about how the blind testing aspect of the research is done to preserve the anonymity of test participants. This was in response to my initial inquiry as to how we could have been so wrong in our assumptions as to what the results of the Lancet Report article revealed about my family’s likelihood of acquiring AD. And while informative, the session with Dr. Quaid did little in providing a logical answer. But as I have already discussed in previous chapters of this story, my ultimate theory about this wasn’t arrived at until some four weeks after we had returned home.

Next it was time for Alex and me to go our separate ways and run through the gauntlet of tests they had prepared for us. They were divided into three sections: Brain scans (MRI and PET), Psychological testing, and a final one-on-one interview with the head honcho himself, Dr. Farlow. The scans and psych testing were both lengthy processes and would each command a better portion of either the morning or afternoon. In the morning session, Alex was scheduled for psych testing while I underwent the brain scans. He remained in the AD Research offices with Francesca, and her assistant took me out to one of the adjacent buildings behind the main hospital for my Brain scan sessions.

Now being of somewhat diminutive stature, I often find myself in potentially claustrophobic situations. The mosh pit of nightclub concert hall, the exit concourse at the conclusion of a major sporting event, or the floor of a National political convention, are a few of the places you just don’t want to be if you have claustrophobic tendencies — which thankfully I don’t — usually. However I must admit to having been a bit apprehensive leading up to my first MRI. I had never actually seen one of the machines except on television, and it never appeared to me that the folks being rolled into one of those contraptions were having a whole lot of fun.

As it turned out, my latent claustrophobia never reared its would-be ugly head, but I’m here to tell you, that’s a tight fit in one of those things. And you never know just how hard it is to lie perfectly still until you actually have to do it. This is the nature of how I spent the next two and a half-hours. First up was the PET scan.

Bear with me children — here’s your weird science lesson for today.*
GEEK WARNING — If talk of technology and science makes your little ears bleed, please skip the next several paragraphs! Otherwise read on (at least *I* found this stuff fascinating…).

The following is an amalgam of info gleaned from various Web sites along with a helpful layman-friendly explanation to me by Az, my good buddy from California, who just happens to be a longtime professional in the Magnetic Resonance Industry. Thanks Az…Hope I’ve got this right.

PET (Positron Emission Tomography), while similar in appearance to an MRI machine, is fundamentally different in its science. PET works with a radioactive “tracer” introduced into the subject’s body via intravenous injection (in my case, with a stationary I.V.). Depending on the type used, the tracer element attaches itself to a particular metabolic component in the blood, such as glucose, which is of particular importance in the functionality of brain processes. The scan then produces a high spatial-resolution image of the area of the body the tracer is present.

So then PET is designed to produce a record of metabolic activity, e.g.: the flow of blood and nutrients in the brain. This obviously gives the doctors the opportunity to compare normal, established brain activity with that of arrested or abnormal activity, such as in a patient with Alzheimer’s disease.

MRI on the other hand produces a physiological record of area of the body scanned. MRI (Magnetic Resonance Imaging) unlike PET uses no radiation, but rather, a powerful magnet and radio-frequency (RF) waves to produce a series of thin, cross-sectional “slice” images of the actual internal physiology of the human body. These slices can then be combined to produce detailed a three-dimensional image of the internal physiological area being scanned.

Since the body is composed of primarily fat and water, which in turn are comprised largely of hydrogen atoms, this then makes the human body approximately 63% hydrogen atoms. The reason this is important is that hydrogen nuclei actually produce a tiny magnetic (NMR) field. During an MRI scan, when these nuclei are subjected first to a large magnetic field from the machine, and then to a strong but harmless pulse of RF waves, the small NMR fields in the hydrogen nuclei are alternately moved out of and then back into position within the cells. As they fall back into position, their movement causes them to produce a detectable radio signal, which is recorded by the MRI machine and transferred to a computer. This signal varies in strength based upon the types of tissues from which it originates. The computer then calculates the image based upon those criteria.

Fascinating huh? Now I don’t pretend to know all the particular advantages each type of scan is offers, but I do know that when PET and MRI are used in tandem, researchers can learn much more about what’s going on in the brain than by either method alone.

OKAY NOW — You can take your fingers out of your ears. Geektime is over.

For my PET scan, I was hooked up to an I.V. and my head was restrained as I laid on flat on a gurney, just inside the cylindrical PET machine. I was asked to remain completely motionless for 60 minutes, which thankfully was broken up into four fifteen-minute intervals. In between, I could stretch my legs or scratch my nose if I needed to — and I usually did. Fifteen minutes can seem like an eternity when you’ve got an itch to scratch. There was a lot of “mind over matter” going on pretty much all during that time. I am, essentially a fidgety sort, and always have been, so this was pretty tough for me. But I did a good job, so they told me, and didn’t move a muscle when I wasn’t supposed to — consciously at least. I do remember drifting in and out of consciousness with mini-dreams and images flashing across my mind. I think I heard myself starting to snore a couple times, but quickly snapped myself back into consciousness. I thought and prayed for my family and friends, including those in Blogland. I tried to fill my mind with positive thoughts and send out good vibes to all.

When it was over, the PET tech thanked me for doing such a good job and offered me a lollypop — just kidding — but she did thank me.

From there I was quickly ushered to another part of the building where the MRI machines live. But before going in they handed me a CD binder and offered me the chance to choose some tunes to listen to while the MRI was being done. It would take 90 minutes as opposed to 60 for the PET. There was a wide selection of music to choose from, and on a lark, I chose Mozart, for no reason other than that I have always liked Classical, but just don’t think to listen to it often enough.

This time of course, I had to go tubular. For the PET scan I had been situated only at the mouth of the machine, however the MRI would require me to go all the way into the belly of the beast. Again, it wasn’t as bad as I had feared, especially given the fact that I was mic’d up and could easily communicate with the tech behind the glass if I were to have any problems.

While the music was nice, the process made it nearly impossible to enjoy. Sixty percent or more of the time the loud RAT-A-TAT-TAT sound that the MRI machine makes was more than enough to break whatever diversion the low-fi music playing in the headphones provided. For this reason there was no dozing off in the tube. However it was relatively comfortable and the varied segments of scan activity (broken into one, three, six and nine-minute stanzas) made the hour and a half practically scream by.

After my MRI session was completed, I waited in a small break room for Francesca to come by and escort me to the next station. I took the five minutes or so to scrawl some notes about my recent experience, which ended up proving invaluable to this story. Soon Francesca’s smiling voice was asking, “Ya getting hungry yet?”

It was lunchtime all right, but I wasn’t exactly famished. My stomach was still a little jumpy, but yeah, I could eat. I gathered my things and we headed back outside into the cold, bright Indy sunshine back to the main building to pick up Alex and break for lunch.

Next: Givin’ ‘em a “slice” of my mind... (continued)
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