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!

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)

Monday, January 24, 2005

The King is Dead...Long live the King.

Sorry to interrupt, but this can’t be helped.
It was my sincere intention to complete my current series before I went on to any other subject. The story of my brother’s current battle with Alzheimer’s Disease has taken more than six weeks so far, and it’s been excruciating to try and get through. As a matter of fact, I’ve got plenty of other story ideas I want to get to. They’re all lined up in queue inside my head just waiting to be written as soon as I can get this current gorilla off my back. However interruptions happen, such as my side posts at Christmas and New Years, because they’re holidays that merit such timely recognition. Now another event has occurred, which in my world deserves similar pause and reflection.

The King is dead.

No, I’m not talking about Elvis — he’s still working the graveyard shift down at the 7-Eleven. I’m not talking about some Middle Eastern potentate or even the King of Beers. I’m talking about the King of Late Night. I’m talking about Johnny Carson.

Johnny passed away around dawn Sunday morning in his Malibu, CA home, apparently due to complications from emphysema. It was no doubt the result of his many years of cigarette smoking, which makes it all the more disgusting and painful for me to take.

You see, I come from a long line of smokers. I am the only one of all my brothers who has never smoked. My Dad quit 22 years ago after having smoked on and off for 23 the previous 43 years. All of his family have been heavy smokers, including my paternal Grandfather, who himself succumbed to emphysema in 1973. I guess that makes Carson’s death a little more personal for me. And it also makes me a little more angry because it circles back to add a stinging reminder as to my own failure as a parent; the fact that despite the example of our family’s history I apparently couldn’t make a strong enough case to prevent my own children from becoming smokers themselves.

Shawn and Amy tell me that they are mostly ‘social smokers.’ They acknowledge that it’s a harmful habit and that someday, they will definitely quit. But as I’ve told them to no avail, I’ve grown up around it and would dare say that I’ve known quite a few more people in my lifetime who after only smoking for a few years have tried to quit and found it extremely tough. How tough, I can’t say, because thankfully it has never been my problem; yet it’s obviously something that’s difficult to deal with, so why start in the first place?

Okay, okay...I’m veering way off course here. It wasn’t my intent to make this post a rant about smoking. I’m not a cigarette-Nazi, and quite frankly it doesn’t bother me to be around it; after all, like I said, I grew up with smokers; I’m used to it; it’s not a major issue. What I do have an issue with is the fact that it has killed yet another person; a person I grew up with; a person I truly loved and thought the world of: Johnny Carson.

You all know who he was, but if you don’t have a clear recollection of actually witnessing him host The Tonight Show Starring Johnny Carson, you likely don’t know what he was. He was a pioneer. He not only defined the genre of late-night talk, he was The Beatles of talk show hosts. He set the standard. He broke the mold.

In the 1960s, when I was between 8 and 12 years of age, there was no cooler treat than being able to stay up until 11:30pm to watch The Tonight Show. I always felt so ‘grown up,’ getting the chance to laugh at the sometimes racy, certainly ‘adult-oriented’ humor of Johnny and his guests. Carson defined the now standard concept of the comedic monologue to begin each show; now it’s standard practice. It may not have started with Carson, but he became the standard-bearer for its use to subsequent generations of comic talkshow hosts to follow.

I know that a lot of you thirtysomethings probably think that Johnny Carson was a little old-fashioned, compared to the raucous, zany or hip, urban styles of David Letterman, Jay Leno, Conan O’Brien and Arsenio Hall. Certainly they all fed off of the Carson genre and added their own special augmentations, most of which are both funny and worthy of praise in and of themselves. But if you were to ask them (and all have been asked over the years) who is the greatest of them all, to a man they point to Carson.

Everyone watched Carson. Of course the fact that there was no cable in all but a fraction of U.S. households in even the latter years of his run didn’t exactly hurt his ratings. But the fact is, Johnny Carson was the definition of water cooler discussion. His show was what everyone talked about in the office the next morning. His monologues were often the topic of discussion for morning radio DJs throughout the country. And perhaps as importantly, all America knew that if someone made an appearance on the Tonight Show, either as an interviewed guest or a musical performer, that person or band was important. They had made it. That’s how significant Johnny Carson’s influence was.

Johnny & Ed
I had actually been thinking about Carson recently, and wondering how he was doing; it seemed amazing how time had flown since he left the public eye. After leaving The Tonight Show on May 23,1992, he basically went into seclusion, making public appearances very rarely and television appearances almost never.

Carson’s sidekick for over 30 years, Ed McMahon would go on, following The Tonight Show to enjoy perhaps his greatest celebrity with the syndicated Star Search TeeVee series, while also putting his face on seemingly any show or product he could throughout the decade of the 90s.

Yet even as McMahon’s public presence began diminishing over the past few years, I was still hopeful to see Johnny to resurface at some point. Unfortunately he stuck to his guns just as he’d said he would when he announced, “When I retire from television, I’m going to stay retired from television.”

And now he’s gone...and I feel like shit.

I feel as though someone just reached into my soul and ripped out a huge chunk of my childhood, not to mention a good part of my adult life. I don’t know anyone my age who didn’t think the man was The Man. He was, quite frankly, a hero to my generation; someone to be admired.

Johnny Carson was 79 years old; not exactly a spring chicken, but three years younger than McMahon, who is now 82. Not that I would have ever wished it upon him, but I always figured that Ed would be the first to go.

The Boy Who Would Be King
When we were kids, my brother Alex and I would pretend that we were Johnny and Ed. I was Carson, of course.

We would do imaginary interviews with greats like Jimmy Stewart (with me doing double-duty with an extremely lame Jimmy Steward impression). Of course Zha Zha Gabor would always stop by with her legendary cat and her even more legendary question to Johnny (which I would learn only years later are merely urban legends). And of course, Carnac the Magnificent would make an appearance as well, giving the answers to Ed’s questions before they were even asked.

But now all these years later I hold in my hand the LAST question. It has been hermetically sealed inside a mayonnaise jar, sitting on Funk & Wagnall’s porch since noon today.

The question is a simple, “Why?” However, we’ll never know the answer. Carnac won’t be making any more appearances.

The King is dead.

Long live the King.

Photo Courtesy Carson Productions, Inc.

Friday, January 21, 2005

It’s Still Ticking (Part XI)

Psyched Out
I’d have to admit I am a jumble of contradictions. I always have been. For example, I love the early morning. To me there is nothing more magical than a sunrise. But of course I rarely, if ever, see the sun come up. You see, I’m a night owl. I always have been. For me, hitting my pillow before 2AM is turning in early. My wife has to roust me a minimum of three times to get me out of my rock-hard slumber each morning.

And organization? Hey that’s my thing too. I love having all my papers filed in meticulously labeled file folders. I think about it all the time. Problem is, thinking about it doesn’t make it happen. The reality is that I have a drawing table here in my office at home covered in piles of papers, receipts, magazines, old bills and computer parts, some of which have been there for almost ten years. I almost can’t believe it myself. I was going to write five years, but when I looked again and thought about it, I realized that some of that stuff has not been touched since 1995. Incredible.

Why do I bring this up? I guess I’m trying to convince myself that there is a justification for my being the way that I am. I’m trying to remind myself that I’ve always been this way; that my mind has always wandered; that I’ve always had a hard time staying on task and always struggled with being able to pay attention in school. If anything, I’m even less that way now than I was as a young person. I think I’ve learned to cope with it a little better over the years.

I guess I’m trying to psyche myself up to not be psyched out over what happened in Indianapolis. I’m trying to do my best not to think that it’s foreboding or an ominous sign of things to come. And really, I don’t think I’m necessarily blowing sunshine up my own ass to justify things. After all, I’ve got history on my side going all the way back to early childhood.

I’ve mentioned before that my daydreaming has gotten me into trouble. Back in the Paleolithic Era, when I was in grade school, corporal punishment was still alive and well, and in practice in most in public schools across America. One fateful day I received my first paddling in the principal’s office by my 3rd Grade Teacher, Mrs. Bea (and she stung like one too, itellyouwhat). My offense: daydreaming in class and not paying attention when teacher called upon me. I was warned twice. Three strikes and I was out; out the door and downstairs to the office.

Now whether or not you want to debate the appropriateness of corporal punishment in schools, the fact is that it was the way of the world in 1964. It was accepted and for the most part, effective. With regard to my situation, one thing is as clear to me now as it was at the time it happened: I brought this one on myself. I mean, it’s not like I there was no deterrent. Mrs. Bea was no Mary Poppins. She had the reputation as a no-nonsense kind of teacher. She was more than a little bit scary. I didn’t think for a second that she was bluffing when on the second warning she said, “…and the next time we’ll be visiting Mr. Halsey’s office.” Still, even after two warnings I went right back into my own little world of spaceships and superheroes, with Mrs. Bea’s blather before the class just so much muffled white noise in the background. When she called my name again I knew I was busted, but I felt helpless. I’ll never forget that feeling. I offered no defense. I simply got out of my seat and joined Mrs. Bea at the door.

I have just recently begun to become aware that there may be a reason for my lifelong struggle with attention span. I used to just accept the fact that I had a wandering mind; that I was terrible in math; that I had to fight tooth and nail with myself to complete tasks and projects in a timely manner. Oh don’t get me wrong, I’ve learned to cope. My tendencies are much more in the realm of idiosyncratic behavior than dysfunction. I am how I am, and I don’t beat myself up over it because for the most part, it’s accepted by everyone else who knows me; it has never gotten me into much more trouble than that sore bottom I suffered back in 3rd grade. I don’t consider myself “learning disabled” by any stretch, but I do know that a lot of the things which other people do routinely — like sitting down and reading a good book — are like pulling teeth for me.

I’ve never been diagnosed, but I believe that I am mildly ADD, Right-Brain Dominant, whatever you want to call it. The more I talk to people about it (thank you, Nanner), the more I am convinced that I am in some way affected in this area.

All that being said, I believe you’ll understand my apprehension at the prospect of going through it all over again, twelve and a half years later. It is single the part of Alex and my trip to Indianapolis that had any qualms about. In fact I dreaded it.

Blood samples? No problem. I’ve never had a problem with needles.

MRI and PET scans? Pffft. I can lie motionless with the best of ‘em. Piece ‘a cake.

Hell, I would have gladly subjected myself to another spinal tap, like we all had to do back in 1992, but they said that they still had our cerebrospinal fluid samples on ice, so no new ones were necessary.

But when I agreed to submit myself as a “control” for Alex’s testing for Alzheimer’s Disease, the one thing I knew I wouldn’t be able to get out of was that godforsaken psychological testing. I didn’t like it back in 1992, and I was confident that I wouldn’t have a better time now. And on that count I wasn’t disappointed.

AAAA: Episode Two
The flight from Dallas to Indianapolis Sunday Night, November 7th was uneventful, that is, apart from another minor episode in the continuing saga of Alex & AJ’s Airport Adventures. This latest situation was innocent enough, but again, caught me a little off-guard. I didn’t get it at first, but I quickly became aware that as we made our way through any public setting, Alex’s sense of uneasiness about knowing what to do and where to go created a tendency for him to want to follow rather than lead. He always insisted that I go first, that way he would be able to follow my lead to know where to go and what to do. When placed in the lead position his actions were nearly always awkward and indecisive. I got my first taste of this as we were preparing to board the plane to Indy.

In what would be a repeating circumstance, as we handed our boarding passes to the airline attendant before heading down the entry tunnel toward the plane, I noticed that Alex was walking with both hands at his sides, unoccupied. I quickly stopped and turned to ask him, “Where’s your suitcase?”

He looked lost. “Um…I don’t know…” he stammered.

We quickly doubled back into the terminal where, to my relief, I saw Alex’s suitcase-on-wheels, propped up against the wall 25 feet away, near where we had first stood in line to board the plane. I motioned to the attendant that I needed to retrieve it and he nodded me on. I jogged over and grabbed the handle and carted it back to my brother, still looking dumfounded about the entire situation.
“Thanks AJ,” he said with a nervous laugh as we headed again down the tunnel.
“Yeah, we’re gonna have to watch that, okay bro?” I cautioned. At that point it dawned on me that I was going to have to be on my guard the entire time we were together, sending my stress level up another notch or two. I knew I would have to stay on my toes much more than I had expected. I wasn’t exactly brimming with excitement over the challenge, either.

As we boarded the plane, Alex again wanted me to lead the way, but I insisted he go before me so that I could keep an eye on him. I assured him that I would tell him where our seats were. The main thing was that I didn’t want to hold up the line. Slow pokes in the boarding line are one of my pet peeves in airline travel, so the last thing I wanted was so piss off a bunch of people who wouldn’t possibly be able to understand what the holdup should Alex experience troubles along the way to his seat. I wanted him in front of me so that I could deal with anything quickly.

When we arrived at our row, in the space of less than 10 seconds, I directed Alex to drop his bag and take the window seat. I then tossed my duffel onto the seat next to him, clean-and-jerked the small-but fairly heavy suitcase-on-wheels up into the overhead bin, and sidestepped back into my seat, placing my bag under the seat in front of me.

As I caught Alex’s glance, his eyes were as big as saucers. “That was amazing how you did that all so fast! You just knew what to do…” he said. At first I was flattered and slightly amused, but the more I thought about it, the sadder I became. Something so simple as placing a suitcase in an overhead bin was now an amazing feat to my brother, a man who has easily flown twice the number of times I have in his lifetime. This man, who has over the years packed countless numbers of bags into overhead bins; this same man now marvels at my doing something that he himself had done over and over again all his adult life.

The gravity of the circumstances involving my beloved Alex was now beginning to settle in my gut. I felt nervous and a little queasy. My shoulders were heavy and stiff. I put my head back and closed my eyes for a minute as Alex feverishly scanned a story in the abandoned newspaper that he had earlier absconded in the airport terminal. His index finger nervously traced the lines of text as he slowly progressed down the columns, often pausing and sometimes doubling back to re-read a part after inexplicably losing his train of thought and needing to read it over again.

We didn’t talk much during the flight. Both of us were exhausted emotionally and physically. The flight seemed mercifully short and before I knew it we were touching down in Indy.

Outside Indianapolis International Airport (IND), we had no trouble hailing a cab and in about 15 minutes time we were standing at the check-In desk of the University Place Hotel, which is situated about 100 yards west of IU Medical Center. We checked in and proceeded up to our room on the fifth floor. By the time we were unpacked and had had gotten our ESPN SportsCenter fix, it was past midnight and well past time for lights out. Tomorrow would be long and challenging on so many fronts.

I slept like a rock.

Next: Givin’ em a "slice" of my mind

Sunday, January 16, 2005

It’s Still Ticking (Part X)

“I don’t want to be sick.”
Surreal World would have nothing on this conversation. I needed some time to collect my thoughts so I asked Alex, “So did you ever get that water you went after originally?”
“Nope. Never made it that far,” Alex said soberly.
“Why don’t we go get it now?” I suggested.

We got up and headed back down the concourse in the direction that I had gone to search for him earlier. There was a snack bar I had noticed about 50 yards up from our position. When we got there I stood in outside while Alex went to the cooler to get his drink. But rather than selecting a bottle of water, he opted for a Mountain Dew instead, catching my glance with a knowing grin as he selected it from the cooler. Mountain Dew, you see, since its introduction back in the mid-60s was a childhood favorite of us both. It has long been sort of an implied symbol of the “good ‘ol days” for Alex and me; a part of the unspoken code of that special fraternity to which we alone belong.

On the way back we stopped by the check-in counter where Alex had gotten his duplicate boarding pass. I asked him for it and then turned to the lady who had given him such a hard time about it earlier; she still there behind the counter. “Ma’am,” I said, “He’s not going to need this after all. I’m his brother and we’d gotten separated earlier, but I still have his original. We’ll just use that.”
“Oh, all right sir, thank you,” she said smiling and nodded as she tore up the duplicate.
“And by the way,” I leaned in, “He does have Alzheimer’s disease.”
“Oh…" she said with a blank expression, “I’m sorry…” Alex and I turned and proceeded again to our gate’s waiting area.

We again sat down, I tried to measure my words as I sought to ask my brother why. “Why did you insist for all these months that you didn’t have Alzheimer’s?
“Denial, AJ…Nothing but denial,” he said flatly.
“Do you mind talking about this?” I asked, “I really didn’t know how to broach the subject, I didn’t know how to talk to you about it. That’s why I didn’t say anything to you when you got up to go for water. I didn’t want to insult you.”
“Well I guess you should have, huh?” he said with a half-smile. “No, it’s okay. I don’t mind talking about it.”

It was strange. I had a difficult time discerning just how much was actually registering. Some of the things he would say were completely lucid, as though he fully comprehended. Yet other times I wondered if he wasn’t just throwing something out there just to sound normal.

I asked him about this trip to Indianapolis, “Do you know why we’re actually on this trip Alex?”
“I know we’re going to see Dr. Farlow,” he said, “That’s about it.”
“Actually,” I explained, “What we’re doing is going to see if they can confirm that you do have Alzheimer’s, and maybe get you some treatment. Did you know that they have drugs out now that can slow down the progress of the disease?”
“No, no I didn’t,” He said intently. “Think they can help?”
“I sure hope so, bro. I sure hope so,” I replied. “Of course there’s still no cure, but they’ve found these new drugs can significantly slow it down; to help you keep what you have maybe a bit longer.”
“Yeah, that would be good,” He smiled

After a brief pause, I continued. “Man, not to be voyeuristic or anything, but how do you feel? How long has it been that you’ve known something wasn’t right?”
“‘Bout a year,” he said, looking up, “Maybe a year and a half.”
“And you really thought it was just depression?”
“We were hoping it was,” he whispered.

Alex stared at the ground, his hands clasped together, resting between his knees. Tears began welling up in his eyes as he gazed at me intently and said, “I don’t want to be sick.” I reached around to hug his neck, “I don’t want you to be either, buddy. Oh how I don’t want you to be!” We sat huddled together, sobbing silently.

After a brief embrace, we took a couple of deep breaths and quickly composed ourselves. Suddenly Alex turned to me with an inquisitive look. “So tell me, how did you arrange all of this,” he asked.

I briefly recounted the string of events leading up to that point; from our concern about him months earlier, to the contact with Dr. Farlow and my subsequent discussion with his wife Saraph. I mentioned her reluctance to let him go before hearing the final diagnosis from his local doctors, and then after doing so, how she and I worked out the details with IU Medical Center to make it happen. It was at this point in the exchange that Alex seemed to get sidetracked. I now in retrospect wonder how many more of the details I delivered he actually comprehended.

Maybe it was too much information. Maybe the realization that other people were making his decisions for him didn’t sit well. But he seemed to latch onto that single thread of our conversation and dwelt upon it. It would be a subject that illustrates his mental disposition as well as anything that I would hear from him our entire three days together. It would serve as one of the quintessential examples of the nature of AD’s effect on its victims: the inability to filter one’s thoughts; being unable to block out one thought while experiencing similar difficulty in concentrating on another.

As I was recounting how I had spoken to Saraph about the local doctor’s diagnosis and then of our making the travel plans to get him and me to Indy, he interrupted, saying, “So…you talked to Mom?” At first I didn’t quite understand whom he meant. I replied, “Well, I talked to Saraph…your wife…”
“Yeah…that’s what I meant,” he quickly interjected.

I continued my explanation and a few seconds later he did it again. “So you talked to Mom. I…had no idea. She never told me.” My heart sank as it dawned on me that he indeed understood who I was talking about, and now in this regressing mental state, be it or not some kind of Freudian circumstance, actually thinks of Saraph as “Mom,” just like the children with whom he now spends the majority of his waking hours. Yet at the same time his apparent fixation on this notion bore the appearance of an expression of sober surprise; as that of a man who has lost control over his own life, and the realization has just now sunk in.

I reassured him that we weren’t tying to sneak around, but that Saraph was the person who wolud have to make it happen; to make the arrangements in her schedule to allow him to go. But I could tell that it bugged him. He would rhetorically repeat the same question, “So you talked to Mom, huh,” at least a half-dozen times over the course of our time together, often completely out of the context of current conversation.

Soon it was time to board the plane to proceed on to Indianapolis. As we prepared to get in line Alex turned to me and said, “AJ…I love you so much. Thank you for trying to help me like this.”

If ever someone needed confirmation of the reason for his or her very existence, well that was mine right there.

The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother

So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me
He ain't heavy, he's my brother

If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another

It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother

How ironic it is, the dozens and dozens of times over the past 35 years that I have heard this song and thought about its lyrics, that I had never applied them to my own flesh and blood. But now for the rest of my life, that will be its only context.

Next: Psyched Out

Monday, January 10, 2005

It’s Still Ticking (Part IX)

“Dallas, we have a problem…”
Please believe me when I say that I’m not a worrier. If anything I’m much too passive for my own good. Panic is generally not an emotion with which I’m acquainted. But this time, this time I’m telling you I was panicked.

It happened so fast, I was totally unprepared. We were just sitting there in the terminal. I was doing my best to make conversation, but it was tough. I wanted to talk to Alex about how he was feeling; what his frame of mind was. I wanted to talk to him candidly about his condition. But there were people all around us and I knew that he was already uncomfortable, making every possible effort to appear conspicuously “normal.”

We were just sitting there and the conversation had lagged again, but only for a moment. Then suddenly and without any previous mention of being thirsty, Alex sprung to his feet and announced, “I’m gonna go get some water.”

As I said, he caught me flat-footed. I didn’t want to make a scene and say, “No Alex, you can’t go by yourself,” and due to the quickness with which he took off, I would have literally had to have leapt to my feet to chase after him. But what about our bags? I couldn’t leave them behind. I was so conscious of not wanting to embarrass him. I froze, with only a halted, “O…kay” managing to pass through my gaping lips as I watched him walk off into a sea of rapidly moving bodies across the busy DFW concourse.

Immediately, the debate inside my head began firing like the 4th of July:
“So what are you gonna do, AJ, get up and follow him, or sit and just watch him go, and just hope that he’ll be okay?
— Aww c’mon he’ll be okay, won’t he? I mean, he’s just heading over to the little restaurant straight across the concourse. He’s in plain sight. I’ll just sit tight and keep my eye on him. He’ll make it back. He certainly will find his way. I’ll just stay and watch him from here. No biggie. It’s cool.”

So I sat, with the echoes of Saraph’s last charge to me reverberating in my skull: “You’re going to have to be with him at all times you know. You can’t let him out of your sight, not even for a minute.”

And then it happened. Alex had stopped in front of the restaurant and peered inside but apparently decided that he couldn’t get what he needed there. Who knows, perhaps he just forgot why he was there in the first place. He made an abrupt right turn, heading down the corridor in search of another place to find his bottle of water, or whatever his reason. Unfortunately when he did so I instantly lost sight of him. Directly perpendicular to my location was a 20-foot-wide retaining wall running parallel with the main concourse corridor. When Alex disappeared behind it, I expected that I would see him emerge from the other side momentarily.

But I didn’t.

There’s no way I could have missed him. “Maybe he’s just standing there on the other side of the wall, trying to make up his mind which way to go,” I thought. “Don’t panic — he’ll show up.”

I continued to wait for what seemed like five minutes — but was probably more like a minute and a half — scanning the entire area, trying like hell to convince myself that I would see him any second now.

But I didn’t.

I could feel my heart pounding inside my chest. I felt completely out of control, like a freight train on the verge of jumping its tracks.

Then I caught myself. “Okay AJ, just get’cher ass up and go find him. If you need to have him paged, so be it. If you need to call airport security, so be it. But DO SOMETHING. He’s NOT going to make it back by himself.”

I sprang to my feet and headed diagonally to the right, towards the corridor, with my duffel bag across my shoulders and Alex’s small suitcase-on-wheels in tow. When I got to the retaining wall I peered around it, praying that Alex would somehow be standing there on the other side.

But he wasn’t.

I looked left, then right. No sign of Alex.

My internal debate became an all-out shouting match.
“No way. NO FUCKING WAY! This is NOT happening! Oh God, Please!
You are such an IDIOT, AJ! Didn’t she say that you couldn’t let him out of your sight? What the FUCK were you thinking?
Oh God! Alex! WHERE ARE YOU?!”

I tried to gather myself and decide on a plan of action. The good news was that time was still on our side. There was still about an hour until our flight for Indianapolis departed. In fact, the current flight at our gate still hadn’t even boarded. There was time to find him. I continued making my way down the corridor to the right, the last direction in which I had seen Alex heading. I decided that I would continue for 50-75 yards and then double back, duplicating my efforts in the opposite direction of my starting point. He couldn’t have gotten any further than that, I thought.

I decided that if I hadn’t found him at that point I would call security. But I had to stay calm and take it one step at a time.

I continued my search, paying special attention to see if there were any newsstands of snack bars that might sell bottled water. I came across only one, peered inside, but no Alex. I continued another hundred feet or so and still saw no sign of my brother. I made a U-turn and headed back toward our gate.

By this time I had caught my breath a little and my panic had subsided somewhat. As I again scanned the adjacent areas along the corridor, my mind was busily thinking about my next contingency.
“How do I go about getting a hold of Airport Security to have Alex paged?
— How long will it take?
— What kind of an idiot am I gonna look like when I tell them that ‘I lost my brother?’
— How do I…wait…Ohmigod, IS THAT HIM?”

A FLOOD of adrenaline coursed through my body as I recognized my brother’s profile, standing at the check-in counter of the gate directly to the left of ours. I quickened my pace in a beeline toward him, but again not wanting to make a scene, I didn’t call out. I saw the counter attendant hand Alex something. He then began to slowly walk away from the counter back toward our gate’s waiting area to the right.

I couldn’t afford to let him get any further away. I called out, “Alex!”
No response.
His back was still turned to me, but he looked up, craning his neck over first his left shoulder, then his right, as if someone was calling his name from somewhere above.
“I’m back here bro,” I said, now only ten feet away.

As he turned to catch my glance his eyes got as big as saucers. I dropped the bags and threw my arms around him. He hugged my neck and whispered into my ear, “AJ…I was so scared…so, so scared.” I assured my brother that everything was okay, and that I was sorry that I allowed it to happen. “But from now on we stay together, okay? We don’t need to do this again, right?” I smiled. “No we don’t,” he chuckled.

As we separated, he exclaimed incredulously, “That lady — she was so mean to me! I told her I had Alzheimer’s Disease, but I guess she didn’t believe me!”

And there it was — the first mention of the “A-word.” I was stunned.

I motioned toward the waiting area seats and we went over to a secluded spot to sit down. “Do you know what just happened, Alex?” I asked.
“Yeah,” he responded, “I got lost. I couldn’t find you, and I didn’t have my boarding pass (I had asked him to let me hold it earlier to make sure we had all of our documentation in place at boarding time), so I went over here to get a duplicate.

“Then I guess that old bitty thought I was trying to pull a fast one and didn’t want to issue me a new ticket. I told her that we’d gotten separated and that I had Alzheimer’s and I didn’t wanna miss my flight. She finally gave it to me, but she really gave me a hard time about it.”

If ever there would be an opportunity to broach the subject, this was it.
“Okay Alex, you brought it up, so I’ve gotta ask,” I said. “You told her that you have Alzheimer’s? Do you think you have Alzheimer’s”
He responded immediately, “Oh, I’ve known I have for a long time.”

The door was finally opened. My brother and I were in for a very interesting conversation.

Next: “I don’t want to be sick.”

Friday, January 07, 2005

It’s Still Ticking (Part VIII)

Indiana wants me
On Sunday November 7th I flew to Dallas where Alex’s wife Seraph picked me up at Dallas/Ft. Worth Airport (DFW). There was about a two-hour separation between my arrival from Nashville and Alex’s and my departure to Indianapolis and they live only about 10 minutes from DFW, so we went back to their home in the nearby suburb of Grapevine.

Except for a three-year stint in Connecticut in the mid-90s, Saraph, Alex and their three children have lived in the Greater Dallas area since 1991. This was the site of Alex’s greatest success as an attorney for the large international law firm he worked for there. It is the place that his family has adopted as home, as my family has similarly done with Nashville.

Soon after it became apparent that something was seriously wrong with my brother, it was obvious that they would have to sell their former home and downsize to a more affordable mortgage. Fortunately they had no problem in finding a buyer and made a nice profit on the sale price. Even better, the less-expensive house they bought is nearly as big (still the four bedrooms as they had before) and is in a very nice neighborhood to boot.

As we pulled into their sub-division I looked around and said to Saraph, “This is a step down for you guys? I don’t see a lot of difference between this one and your old neighborhood!” She said they were pleasantly surprised and grateful to have been so fortunate, both in the way things worked out on the sale of the old house, and being able to find such a nice new place.

As we continued to drive to their house, Saraph went over the ground rules, talking about how I was going to need to look after Alex on this trip. “You’re going to have to be with him at all times you know,” she warned, “You can’t let him out of your sight, not even for a minute.”

“Really? Okay…” I said, thinking, “Well I really wasn’t planning on sending him out for smokes. I mean, is he really that bad?”

As we pulled into the driveway, she concluded the conversation saying, “He’s a lot different than he was the last time you saw him.”

THAT was an understatement.

The man who would soon greet me would look familiar, but sadly, a large part of that familiarity was the look in his eyes. It was the same look I had seen in our older brother David, some fifteen years ago, at our family reunion in Telluride, Colorado. At the time, David was about at the same point in his AD onset as Alex is now, and the faraway look that I saw in his eyes then, I would now see in my beloved little brother.

As I walked into the house, Alex emerged from around the corner, standing silent, smiling and staring as if he were looking right through me. We embraced and I knew instantly that this would not be an easy road trip. My normally effusive broheim was reserved and hesitant to speak. He seemed genuinely happy to see me, but the rigidity of his body told me that he was anything but comfortable. He welcomed me into their bright kitchen where the three of us we talked while Alex busied himself with his now incessant pastime of cleaning and household chores. We talked about the sale of their old house came down and how happy they were in their fine new home, which appeared to be less than five years old.

I was there just long enough to see the house, be introduced to their new golden retriever (who spent an inordinate amount of time introducing herself to my crotch), and also reintroduce myself to my two nieces. Alex’s eldest child, his 17 year-old son, was working so unfortunately I didn’t get a chance to see him. The girls, whom I hadn’t seen in two years and of course, had grown like proverbial weeds — very intelligent weeds I might add — were more talkative than I’ve ever known them to be.

The older of the two is a ninth grader and was proud to show me her budding computer graphic design skills, knowing that’s what I do for a living. She showed me a couple flyers she had done for school events, and they were pretty good. When I told her how impressed I was with her work, she gave me the biggest smile I think I’ve ever seen from her pretty, yet usually unemotional china-doll face.

Her little sister, the sixth grader, conversely has always been bubbly and chatty to a fault. She begged me to play checkers with her, a game she had recently gotten the hang of. Knowing how smart this little gal is, I instantly got the feeling that I was about to be played by a ringer, but I went along for the ride. Not surprisingly, after about 20 minutes the game finally ended in a stalemate when it was time for us to leave to return to the airport. Whew — saved by the bell!

While I was spending time with the girls, Saraph was busy pulling together Alex’s things. Soon we were heading out the door and I was hugging my nieces goodbye. Being unfamiliar with the vastness of DFW Airport and moreover that of the three separate American Airlines (which was our carrier) terminals there, I hadn’t stopped beforehand to find out which gate our flight would be departing from. So Saraph just dropped us off at the first terminal. Hugs and good-byes were exchanged as Alex’s wife wished us well. As I hugged her she whispered, “Thanks AJ. I really appreciate you doing this.”

I nodded and thought to myself, “How could I NOT do it?”

I have assigned my brother’s wife the pseudonym of Saraph because it is appropriate to her newly appointed role in the life of her family. She is surely now her husband’s guardian angel, as are all women who serve in such a capacity for their families.

She is as headstrong as any woman I have ever known, and that aspect of her personality has not always endeared her to some in our family, but she and I have always gotten along well. And though I may not have always understood her, I have always loved and respected her strength. That strength is now the only thing that stands between total chaos and a normal life for herself and her children. In my three days spent with Alex, I got only a small taste of what her life is now like on a daily basis.

As we began going through security, I got my first glimpse.

Genesis 4:9-12
Then the LORD said to Cain, " Where is Abel thy brother?" And he said, "I do not know. Am I my brother's keeper?"

That Bible passage began flooding through my mind as I watched Alex nervously fidgeting, first with the contents of his pockets, then with his shoes, which we were asked to remove, wondering what to do next as we prepared our carry-on belongings for passage through the x-ray machines.

It was so hard to fathom seeing him in this context. Even though I was older, Alex had long since passed me up as leader on our journey down the road of life. He was always so self-assured, so confident. Now he would wait for instructions, looking to follow my lead. This was the last time he voluntarily went on before me to do anything on this trip. He always wanted me to go first; to see where I was going to go and what I was going to do, so that he could follow without having to ask. I knew that he was aware of his difficulties. There will come a time, hopefully not too soon, when his frustration will be all but gone, when he won’t know or care what he can or can’t do. But now, this is hard for him; and hard for me to see. Throughout our time together to this point the mention of Alzheimer’s Disease had yet to be uttered between us. As far as I knew, he was still convinced that his troubles were all related to depression. I knew we would have to talk about it eventually, but I just didn’t know how to broach the subject without insulting him.

Once we passed through security we got a look at the terminal monitors and found our flight’s gate number. Just our luck it was in the second of the three AA terminals, some 28 gates away from our current position. Time-wise we were still in great shape, but I wanted to just get to the gate and have all our ducks in a row as soon as possible.

After a few minutes of walking through the terminal at an uncomfortably brisk pace with our single, but bulky bags across our shoulders, we were fortunate to have a terminal ‘people cart’ driver pull up beside and ask us if we needed a ride. “Oh yeah,” I said. As we sat down and relaxed for a few minutes, riding along on a trek that would have easily taken an additional 10-15 minutes on foot, Alex turned to me and said, “AJ, I didn’t want to say anything, but I was really getting tired back there. I fatigue so easily now. Let’s not do something like that again, okay?”
“Thanks for the info bro,” I smiled. “We’ll take it slow from now on.”

We arrived at our gate, C-28 and as the driver was retrieving our bags from the back of the cart, Alex fumbled for his wallet and pulled out a couple bucks to tip the guy, which was something that didn’t even enter my mind. But Alex was a seasoned traveler and a class guy. He always did things right. He handed the driver the money and we both thanked him. “You gotta treat these guys right,” he said with a half grin.

We grabbed our bags and sat down in the waiting area. It was still over an hour before our flight and the gate’s current flight passengers were still waiting to board. I went up to the check-in desk to make sure we at the right gate, since our flight’s number and destination info had yet to be posted. I made sure not to lose sight of Alex, who I could clearly see from the desk.

Learning that we were indeed in the right place I returned to where we had been sitting to find Alex talking with a late-twentysomething woman seated across from us. She was traveling with two small children, a toddler and a baby in a stroller who looked to be around 18 months old. Alex was fawning over the baby and making small-talk with Mom, a fairly rough-looking bleach blonde wearing a skin-tight blue short-sleeve top featuring the words, “What Boyfriend?” emblazoned across her ample bosom.

As I sat down I couldn’t help but turn my glance to the woman tending to her kids, who were both noisily making an incredible mess eating and playing with whatever the snacks were that they had at their disposal. The woman and I acknowledged each other’s presence and she again turned her attention to her kids. Alex turned toward me, grinned and rolled his eyes.

“This must be Dallas,” I whispered.

“You would be right, Sir,” He whispered back.

For the next 15 minutes or so, the two of us made restrained small talk, interspersed by 1-2 minute periods of silence. Besides the fact that we were surrounded by people well-within earshot of hearing every word out of our mouths, I still hadn’t figured out how to really talk to my brother about what this trip meant; what we were going to do, and why it was so important. My stomach was beginning to feel unsettled. I was tense. Eventually we were going to have to talk about things. I just didn’t know when that time would be. Fortunately — or unfortunately, depending on how you look at it, I didn’t have too much longer to wait for the opportunity.

Next: “Dallas, we have a problem…”