Monday, January 31, 2005

It’s Still Ticking (Part XIII)

Next: Givin’ ‘em a “slice” of my mind… (continued)
After my morning session of PET and MRI brain scans, and Alex’s psych tests, we were both ready for a break. Francesca and I returned to the Alzheimer’s Research departmental office in the main IU Medical Center building. Alex was still engaged in the arduous task that yet awaited me after lunch. She asked me to have a seat in the reception area while she went back to see if Alex was close to wrapping up. She emerged a few minutes later explaining that they were running a little behind, so we’d wait here while he finished up. Meanwhile, we sat and talked. She had some questions for me about the family members who had been involved in the testing from back in 1992. I learned that not only was Francesca the coordinator of clinical research for the IU Alzheimer’s Disease Center, but more specifically, she was the keeper of the pedigree.

A pedigree isn’t just a can of dog food. It is by definition a lineage; a record of ancestry. In this context, it was a chart that Francesca showed me, illustrating my entire known family tree on my Mother’s side dating back through four generations of known AD occurrences in the family’s country of origin, Romania. As mentioned before, to the researchers, the subjects whose genetic material they study are merely case numbers, stripped of their human identity. This is for the protection of both the individual and the institution. But somewhere, someone has to know. Somewhere, someone has to keep track of the actual identities of the family members. That person is Francesca.

She pulled out a pedigree chart from a slightly dog-eared manila file folder and pointed to the line that represented the members of my family and that of my two aunt and uncle who were members of that “Generation Two” group of AD carriers. Written in pencil beside each of the symbols on the chart were the names of the family members. A few were missing. Francesca asked if I could identify who they might be and I did. She also had one glaring error that I quickly rectified. She had Alex listed as the fourth out of the five children in my immediate family. I informed her that it was the other way around. My name should be in that spot instead.
“Ohhh,” she exclaimed. “I thought you were the baby.”

As we continued to visit, Francesca educated me on a few of the latest developments in AD research, including the discovery that the familial types such as the strain that afflicts our family, and the non-familial, or sporadic variety, which is the most predominant, are not mutually exclusive. They are discovering more and more cases in which both AD types can occur within the same genetic line. Sobering news to be sure.

About that time Francesca glanced down at her watch and excused herself to go back and check on Alex’s progress in finishing up his psych tests. She couldn’t allow us to get too far behind schedule and we really needed to break for lunch soon.

When she reappeared a few minutes later Alex was in tow, carrying a fatigued expression. As we first made eye contact his countenance dropped even further and he rolled his eyes to punctuate what an ordeal he had just been through.

“What a drag, huh?” I said with resignation.
“You have no idea,” He replied.
“Unfortunately, I’ll be finding out shortly.” I quipped.

Francesca announced that we would have to make it a rather quick lunch because Alex still hadn’t quite finished his psych tests and they would have to have to redouble efforts to do so in order to stay on schedule. His PET and MRI sessions would be first up when we returned from lunch. The completion of the psych testing would have to be fit in at the end, but she admitted they might just have to skip it and just go with what they have.

We dined at the restaurant in the hotel that Alex and I were staying adjacent to the Medical Center. Francesca did her best to ease the tension that Alex and I were both feeling by making the conversation light and talking about everything from her childhood, to Indy rush hour traffic, to 1970s fashions. It helped a little, but yet my turkey sandwich was dancing a jig in my stomach by the time we were ready to return to the Center.

Mind Games
The afternoon session would pit me against a formidable opponent: my racing mind. The trick was to be able to slow it down long enough to negotiate a treacherous course of mental gymnastics I had traveled before with fair-to-middin’ results.

Back in 1992, during the AD research session in which my family participated in en masse, psyciatric testing was also one of its primary components. The curriculum would be slightly different now, more than twelve years later, but it certainly wouldn’t be any easier.

Did I say this before? I forget. Anyway, If you’ve known me from childhood — check that — if you’ve known me for more than an hour you also know that I’m prone to short-term lapses in memory. I don’t like it, but I’ve accepted it as part of my mental makeup. I’ve been that way all my life…if memory serves (cue the rimshot). Actually that fact was somewhat of a comfort going into this whole psych-testing circumstance. I knew that if perchance I didn’t exactly give a Memorex performance, it wouldn’t necessarily be an indication that there was anything terribly wrong with me — or would it?

I have to admit, the fear gnawed on me, “What if I go in there and really stink it up? What then? Is this it? Is this when I find out that fate has tagged me as mercilessly as he has by beloved little brother?”

As Francesca led us back to the AD Research Center office area, we parted ways as she paired up with Alex to whisk him away to his PET and MRI sessions. I was left to confront my tormentor for the next two hours or so: a very cute, petite and friendly young woman with long dark brown hair and quite possibly the sweetest voice I’ve ever heard.
“Hi AJ…I’m Traci,” She said, extending her hand. Her shy demeanor, dark-framed glasses and white lab coat completed the package.

“Thanks a friggin’ TON,” I thought. “That’s all I need — more distractions!”
I was convinced they did this to me on purpose.

Now the fun begins. Traci explained that she would be administering to me a series of short exercises to test my short-term memory, cognitive and motor skills. In all honesty, they weren’t all that bad — most of them anyway.

She started off with a series of simple questions, among which included: what year were you born? How do you get to your house? Who is the President of the United States? How old are you? What’s today’s date? What is your date of birth? And so on. Of course those were a breeze, but ahh…that was the setup. That was the bait, now here came the switch.

Traci told me she was going to read three very short stories. At the end of each story, she would ask me to recount as many details about the stories as possible? Simple huh? Not so much as you might think. The stories were extremely detailed, and read very slowly. I felt as though I did horribly, being able to recount only 7 or 8 details. I could feel the hot coals burning at the base of my skull as I always do when I’m under stress. It was horrible.

My only saving grace it seemed was the fact that these hellacious memory exercises were equally interspersed amongst more palatable cognitive and motor skills tests, which I excelled at.

One of the ones I really liked was the vocabulary test, in which Traci showed me a series of flash cards with unusually spelled words (often Latin-derivations) printed on them, asking me to pronounce each word, such as cliché, apropos, and superb. I aced those.

Equally enjoyable were the geometric shapes exercises in which I was asked to study a series of non-uniform linear geometric shapes for about 30 seconds, then re-draw them from memory. No problem. About fifteen minutes later she asked be to do it again from memory. Again, no problem. But when she again asked me to recall details of those three stories from earlier in the session…problem. The second time I remembered fewer details than the first. My confidence again took a nosedive.

Almost nearly as frustrating as the story exercise was the single-word recall exercise. Again it was administered fairly early in the session, then again and again throughout the remainder of the two-hour test period. There were ten words on ten flash cards, shown to me in series, one at a time. At the end I was asked to recall as many of them as I could, which was six the first time — six out of ten. I felt like such a moron! Later when asked again, I managed to come up with one extra word I hadn’t recalled before. Big deal — I still felt like a failure.

But there were still more opportunities for small victories. Two of the motor skills tests were a test of manual dexterity. One involved a small black two-inch square box with an analogue counter display on the top and a tiny finger lever emerging from the left side. The lever was curved so as to fit the contour of an index finger; however not so much that it would prevent your finger from slipping off when engaging it at a rapid pace. The idea of the exercise is to see how many times in a 30 second timed period you could flick the lever and advance the counter. I believe my best score was around 57 with my right hand and 45 with my left. I have no idea how good or bad that score is, but I felt okay about it.

The other motor skills test involved a small box, about 4" x 4" wide and 1" deep, with a series of small die-cut crescent-shaped holes across the top. Beside the box was a pile of tiny 1 1/2" stainless steel rods, also crescent-shaped to fit inside the holes in the box. The obvious objective of the exercise was to as quickly as possible, place the rods inside the holes. The “twist” was that the holes were all cut and pointed in varying positions, so that the position of each the rod’s insertion would be different than the one before. The idea was that the rod would have to be rolled between the thumb and forefinger until the proper alignment position is reached to fit it into the hole. Again, harder than it might seem, especially under the pressure of being timed. And once again, I don’t know how my score ranked amongst the norms, but I felt I sailed right through.

All in all, I felt I did well in about two thirds of the exercises, which ain’t bad, except when those tests I bombed on are all in areas that are the most glaringly associated with symptoms of Alzheimer’s, which caused me a great deal of distress. I tried of course to play it down but it was tough.

Final Exam
When the fun was finally over, Traci led me into another room where Dr. Farlow would later join me to perform an exit examination. I took the time to again make a few notes for this story. Before I’d gotten more than four or five lines down, a tall man with a familiar gray beard appeared in the doorway.

Dr. Farlow always seemed to be a kindly sort, yet somewhat aloof. While he is certainly enthusiastic about his work, in all of my personal dealings with him over the past 15 years, he has never been one to volunteer any more information than absolutely necessary. I wondered if this meeting would be any different.

We briefly made small talk about the weather, the War in Iraq, and fact that he looks so incredibly similar to one of my brother Jack’s lifelong friends. I related to him that this friend of my brother was the one who accompanied Jack and me to see the Beatles in concert when they played the Indiana State Fairgrounds on their very first American Tour in 1964. The fiftysomething Farlow, who is surprisingly younger than his whiskers make him appear, said he remembered the buzz about the show, which happened when he was twelve and I was a mere eight years of age. He said he wanted to go but his Dad wouldn’t let him.

“Thank God for big brothers,” I thought.

I asked Dr. Farlow if he had seen Alex yet and he said he had not, but was going to see him right after he had finished with me. “Do you have any inclinations yet?” I asked him, seeking any kind of encouraging sign regarding Alex’s potential disposition with Alzheimer’s Disease.

“According to what I’ve seen from the tests so far it doesn’t look good. But I need to see him before I can really say,” he said solemnly.

He asked me to remove my shoes and proceeded to perform a number of physical and psychiatric tests, some of which were only a slight variation of the ones I’d just finished receiving in the other room from Traci. Farlow asked me most of the same questions from the previous session: what was today’s date, how do you get to your house, who’s the President, etc. He gave me a series of four words to remember. He said he would ask me to recite them later. I concentrated like HELL. I was bound and determined to win this battle! Again he turned the conversation to other things as he listened to my heartbeat, tested my reflexes with one of those little hammers shaped like a mini tomahawk, peered into my eyes and ears, and asked me to stick out my tongue and say “Ahh.”

By now about five minutes had passed. Farlow turned to me casually and asked, “Do you remember those words now?

With a steely stare I rattled them off without hesitation. “YEAH, BABY!” I shouted inside. What were the four words you ask? You kiddin’ me? I can’t remember that far back!

I pulled my shoes and socks back on as Dr. Farlow packed his tools back into a tattered, black doctor’s bag that looked like it better belonged on the set of a Hollywood Western than in a modern hospital.
“That thing’s got some miles on it, huh?” I quipped.
“Just about as many as I do,” he said, smiling.

As he headed for the door I asked if he minded me sitting in on his examination with Alex. He said that it would probably help put my brother at ease, and thanked me for offering. Alex was already waiting in the room just one door down. We entered and I sat in a chair in the opposite corner and watched silently. Alex glanced over to me and smiled, but I could see the weariness in his eyes. It had been a tough day.

As Farlow rattled off the same list of questions to Alex as I had been asked earlier, my heart sank as I heard some of his his answers. He answered “43” when asked his age. He’s 44. When asked how to get to his house, he fumbled through a series of fits and starts sentences, never assigning a name to a single street he attempted to describe. After being told twice earlier that morning, he now had no idea when asked what today’s date is. He did know his date of birth, who the President is and how many children he has, but he didn’t know what grade his eldest child, his son, was in.

My head began spinning as the inevitability of positive diagnosis began to register its finality in my mind. Just then, there was a knock on the door. A handsome gray-haired man peered in. He looked familiar but I didn’t know where or if I knew him. He softly apologized for the interruption and asked Dr. Farlow if he could borrow me for a few minutes.

As I stepped out into the hallway the man introduced himself. “I’m Dr. Benson…remember me?” As he shook my hand it suddenly dawned on me why he looked familiar. “I was the doctor who administered your psychiatric evaluation back in 1992,” He said with a wide grin.
“Oh yes, I remember you, I deadpanned. “How could I NOT? You put me through hell that day!” We both had a good laugh over that one.

Dr. Benson once again apologized for the inconvenience, but explained that his assistant, Traci, who had earlier administered my current psych tests, had unfortunately been remiss in her duties. He asked if I wouldn’t mind going back in with Traci and finishing up two short exercises so that they could complete their data on me.

“Oh GREAT!” I thought. Just when I thought I was all done too. Oh well, I couldn’t very well refuse. They needed the info and I wanted them to have it. “Sure” I smiled. “Whatever you need me to do.”

Dr. Benson led me to another nearby room down the hallway where Traci was already seated at the desk. I took a seat on front of her as the door closed gently behind me.

“I’m so sorry AJ,” Traci said in that voice so sweet it would have awarded her forgiveness even if she’d just admitted to shooting my dog, “I messed up. You know those ten words that I asked you to remember and recite earlier this afternoon? I was supposed to have you do that one more time — and then there was also an additional exercise we were supposed to do at the end. Do you think you could still do that for me? I know it’s been awhile now, but would you mind trying to do the ten words once more right now?

“I can sure give it my best shot,” I said, as I tried once again to conjure up those confounded words. I was exhausted. I managed to come up with five that I was sure of. In all, of the ten words over the course of three attempts, I recalled six, seven, and five words respectively. At that point I was too drained mentally to feel any worse about it. I just wanted to get this last exercise over with so I could be done and I could get back to Dr. Farlow and my brother.

But then the tide turned…just a little.

“Okay,” she said, “this is the last part. I’m going to show you another series of words, which includes all of the ten words we’ve been having you recall. I want you to try to tell me if you recognize them now.”

She began flipping through a stack of about twenty flash cards, and it was as if I’d been studying those words for a week. I went through and kept count whenever I saw a word I recognized. I nailed all ten.

Victory at last!

I felt suddenly exhilarated as I shook Traci’s hand one last time and excused myself to return to the exam room where Dr. Farlow was now finishing up with Alex’s physical tests.

That good feeling was to be short lived.

Requiem for a Miracle
I entered and again took my place on the chair in the corner. As he had done with me previously, Farlow asked if Alex if he could remember the four words. My brother paused briefly then replied matter-of-factly, “Nope…sorry.”

Dr. Farlow turned to me and said, “AJ, could I have a word with you?”

Alex was still getting his shoes back on and Farlow apparently was concerned that he might overhear his comments so he spoke to me in a hushed tone. “AJ, I’m sorry, but there’s really not much I can do for him.” I wasn’t aware how far into the onset he was when we first talked on the phone.”

I’m sure my mouth was agape. I was dumbfounded. “I thought that you were interested in having him enter the research program here at IU like my cousin Cheryl is doing (Cheryl is my age and as a part of the testing in 1992 discovered she carried the AD gene. She has been an ongoing participant in the IU research ever since).”
“Participating on that level requires twelve trips here to IU each year. I don’t really think that’s feasible for your brother’s family, do you?” Farlow asked rhetorically. The answer was fairly obvious.

I could tell by Farlow’s demeanor that he was embarrassed and frustrated. I’m certain that he was expecting a lot more of my brother’s mind to still be intact. Quite frankly, so did I, coming in.

“Well what can you do for him?” I inquired.
“We can get him on one of the new medications that should serve to slow the disease down. But beyond that…”

“Okay then, thanks Doc,” I said with more than a hint of resignation in my voice. My head felt numb. I was drained and dejected. This was it. I had kept hoping that somehow, some way, a miracle would happen and Dr. Farlow would say that he could do something for Alex. Something that would reverse the course this devastating disease has led my brother down.

Just then, Alex emerged from the exam room. And Dr. Farlow made it official. “Alex,” he said, “you know you have this disease that runs in your family. You have Alzheimer’s. You understand that?”
“Oh…yeah. I know. I understand,” he responded without hesitation.

Dr. Farlow then approached with a clipboard containing what I assumed was one final release form. Alex signed it, and that was it.

A few more minutes passed as everyone gathered themselves and prepared to head out under the evening’s purple winter sky. I thanked Dr. Farlow again for making this all possible. He didn’t have to do this and I wanted to acknowledge that fact to him. He said he was sorry he couldn’t have done more.

I discussed arrangements for getting us back to the airport the next morning with Francesca, who offered to drive us herself if her schedule allowed. She said she had a meeting pending but thought there was a good chance it wouldn’t materialize. We decided we’d play it by ear. Our flight wasn’t until 11:00 A.M. so we’d have a little leeway. If worst came to worst we could always call a cab.

I offered my thanks to everyone within earshot as we headed for the door. It was an exhausting day, but an important one as well.

Francesca walked with us out to the front of the hospital to thanks and hugs from both Alex and myself. We waved goodbye and headed back to the hotel across the street.

When we got back to our room the last thing I wanted to do was to figure out what we were going to do for dinner, but I knew if I didn’t, no one else would. Alex was already perched on his bed watching TV. He was surely even more exhausted than I was.

“Hey man, I’m gonna go get us something to eat,” I announced. “Can I depend on you to just stay here and watch TV until I get back?”
“Oh sure. I’ll be fine,” he smiled.
“You’re promising me that you won’t go anywhere, right? Remember what happened at the airport,” I said.
“Oh no. I’m not going anywhere AJ,” he assured.
“Okay then. I’ll be back in a flash,” I said, and I was out the door.

If only I’d remembered to take my friggin’ BRAIN along with me.

Next: '>Lose me once…shame on me. Lose me twice…shame on you know who!
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