Friday, December 31, 2004

All is quiet on New Year's Day

Another Holiday Time-Out
Again I just wanted to take a break from the “Never-Ending Story” to wish all my friends in Blogland a very happy and safe New Year’s Day celebration. If you didn’t notice, I just posted another segment of “It’s Still Ticking (Part VII) just before this one. So if you get tired of partying like it’s 1999 this evening and you need something to sober you up, well you’re welcome. Consider it my gift. *LOL*

Amy has already headed back to Chattanooga and Shawn will be hanging with his buddies here locally, while Michelle and I travel to Memphis to spend the weekend ringing in the new year with our friends the Franklins.

So there won’t be any additional new story segments until at least Monday (but I ain’t makin’ any promises for then either). Let me say again how much I appreciate you guys for sticking with me in this often tedious re-hash of my recent trip to Indianapolis with my brother Alex. You’ve been so generous and supportive with your comments. I’m glad to know that it hopefully hasn’t been as difficult to read as it has been to write.

But the good news is that it has been extremely cathartic and healing for me to get it out of my head. I can’t tell you how much better I feel now than I did a month ago. So thanks for your continued support. I promise, 2005 will hold many stories that are happier than this one.

Thanks again for bearing with me. And thanks be to God for placing me in this place and time with all of you. Blogland, if nothing else in my life, has made 2004 a very good year!

Happy New Year all!

It’s Still Ticking (Part VII)

My brother’s keeper (continued)
After my gut-wrenching my conversation with Saraph back on October 18, 2004, the only thing I could do was wait. I knew that I certainly couldn’t schedule anything with Dr. Farlow’s people at IU Medical Center without first having her approval and endorsement on the whole affair. And obviously from her reaction to it, it wasn’t going to be an easy sell if her doctors came back with a confirmed positive diagnosis for depression, which they originally purported was the source of Alex’s problems.

Immediately after I got off the phone with Saraph, I called Dr. Farlow, to have a kind of preliminary contingency discussion regarding Alex, and to learn exactly what his offer to take my little brother in actually entailed. Up to now I had never spoken directly to him regarding my brother, and actually hadn’t spoken to him at all since my family’s en masse research participation in April of 1992.

I told him what I knew of Alex’s condition, and he said that given our family’s history alone, he was reasonably sure that the source of his problems is indeed Alzheimer’s and not depression. I related to him Saraph’s position that she would take no action until she received the final diagnosis from her local doctors on October 27th. He said that was fine, and whatever the outcome of that diagnosis, his offer was still open. He gave me the name of his chief administrator, and said that she would be calling to make the arrangements should Alex’s wife agree to allow him to come.

I had made a list of bullet points based on things that Saraph said in our conversation that had spawned questions that I wanted to ask Dr. Farlow. Certainly the most pressing question was the one that I had the least faith he could — or would — answer.

“Dr. Farlow,” I asked, “Can you tell me how this could have happened? I mean, I realize that the results of the research testing we did back in ’92 didn’t name names. But the way it was reported, and the way things played out with the family members who ended up proving to be affected, sort of indicated to my immediate family that David was the only one who carried the gene.”

Dr. Farlow paused before answering, “AJ, I’m sorry, but I’m really not sure what you’re talking about.”

I was a little taken aback by that response. “Um…you know, the age range of the study subjects and all. We thought it sort of indicated that we were all in the clear. Did Alex just fall through the cracks?”

“Please understand something AJ,” Dr. Farlow said in a serious, yet caring tone, “That study was never intended for diagnosis — but for research only. When we test for diagnostic purposes, we go through the entire process three times to make absolutely sure the results are verified.

“Besides that, in research we often change up the identifiers, like the age and sex of test subjects to retain anonymity and reduce our liability as I’ve told you before.

“So no, I’m really sorry you misconstrued the test results, but until anyone with your family history actually goes through the diagnostic testing, we can’t officially rule out the possibility that they won’t develop Alzheimer’s.”

I was dumbfounded. It was bad enough that I had believed that Alex had been an anomaly, but now for the first time I knew that I was no longer in the clear as I once thought.

“So…that means that I’m still at risk?” I said cautiously.

“How old are you now AJ?” Dr. Farlow responded.

“48,” I said.

“And Alex?”
“Well…I can’t say for sure one way or the other, but I really wouldn’t be all that worried about it if I were you.” Dr. Farlow’s measured response made me wonder if he was speaking from certain knowledge, or in just in generalities.

“Based on your family history,” he continued, you’re really past the age of onset. Have you noticed any problems with your short-term memory in recent years?” 

“No, but then my Mom said I was always in a fog when I was a kid, so I guess I’m no worse than I’ve always been,” I responded.

“So yeah…You’d probably have noticed something by now…Nah…I don’t think you have it.” His somewhat casual assertion certainly made me feel better, but I still couldn’t shake that unsettled feeling. Everything in the test results lined up — with regard to both the age and sex of those who ended up developing AD. Alex was the only variable. It just didn’t make sense.

Author’s note: For those of you about to slit your wrists at the prospect of me launching off on another “How could we have made ‘the mistake’ jag, take a chill pill…it ain’t gonna happen. As I noted in the earlier parts of this series, I am firm in my conviction as to how Alex could have had the AD gene. Two others I spoke to IU have confirmed that Dr. Farlow was absolutely correct in his assertion on routine identifier masking. However I am still convinced it was the fact that we didn’t note the number of subjects (six out of a possible nine) who were actually used as test subjects that allowed for the possibility of three of us having the gene, and Alex was obviously one of those three.

However at the time I was having this conversation with Dr. Farlow, I hadn’t yet made that discovery. It was only after having already begun to write this series that I realized our error. I only mention his comments for the purpose of chronicling what was said, and what I was thinking at the time.

You can put away the razor blades now. Back to the story.

Of course now the only question in my mind now is whether or not I myself have the AD gene, and if, as Dr. Farlow surmised, that means that I’m beyond the age of onset. I do know that I’m the only one left in my family who is still young enough to even be considered at risk. More on that later.

Following my conversation with Dr. Farlow, I called to my Dad to update him on my two very important phone calls. We would just have to wait for Saraph to call me back to determine whether or not this thing was going to happen.

The waiting was tough, and it was hard not to dwell on it during those ten days. Blogging really helped. I was just beginning my Yosemite Psalm series, one of my all-time favorite memories, and kept me occupied with good thoughts instead of bad ones.

The truth (more than) hurts
Wednesday October 27th came and went and no word came from Saraph. I assumed that, as she had said, she might have gotten word late on Wednesday, so when my cell phone started jumping around on my desk at 9:30 on Thursday morning, I didn’t even have to look at the display to know who it was.

“AJ, it’s Saraph. Can you talk?
“Sure…give me a minute…”

I quickly left my office area and made my way down the hall to a nearby exterior exit. This was definitely a conversation I wanted to have far away from the prying ears of my co-workers.

“Okay,” I said, “I’m outside now. So what’s the word?”

“Well I got the results back yesterday…and they said that Alex is definitely suffering from depression, but…” 


“But…they did find evidence of dementia that was unrelated to the depression.”

I felt as though somebody whacked me on the back of my knees with a baseball bat. My knees went wobbly and my heart jumped. But as quickly as the feeling hit me, it subsided as I guess my brain automatically switched into survival mode. There would be time for sorrow later. Now was the time for action.

“Okay, so what do you want to do?” I asked.

“Well, I told the doctor about Dr. Farlow’s offer, and he said he thought it would be a good idea to take advantage of it, to just confirm everything and especially to get whatever treatment they could offer,” she said somberly.

In the back of my mind my anger burned. I wanted so badly to say something but I held my tongue. These doctors to whom his care was entrusted, had from day one insisted that depression was the root cause of all Alex’s difficulties, and was thereby treatable. But while their preliminary diagnosis provided hope, it only served to mask reality and waste precious time in which Alex was slipping further and further into Alzheimer’s onset. The more time passed, the more he lost that which might have been saved with proper treatment, had his diagnosis allowed for AD and looked for the proper cues.

But most damnable was the fact that these doctors couldn’t seem to make a final affirmative diagnosis with regard to this “depression” or successfully alter the profound impact it was having on Alex. This was despite the fact that they loaded him up with two separate powerful anti-depression medications, taken concurrently with other drugs for his sleep apnea. So they took over eleven months to finally return with a final diagnosis, confirming that Alex is clinically depressed, but oh, by the way, he also shows signs of dementia, which strangely has no connection to either the depression or sleep apnea!

However this was no time to scold my sister-in-law. This was no time to say “I told you so.” She was doing and had always done what she thought best for her husband. But now the course was finally clear. Nothing was in limbo. Pretty much the only question left now was how much of Alex’s fleeting memory could be saved? Could the new drugs stabilize him? We needed to act quickly, but to what end?

I told Saraph that my contacts at IU were in place and I would immediately make travel arrangements.

“You know that I can’t put him on a plane by himself, right?” She cautioned.

“Oh no — yeah, I was planning on flying down there and the we’d fly to Indy together,” I assured her.

She continued “Okay…I just need you to understand — he cannot be left by himself at any time. He’s fine here at home and in familiar surroundings, but he just gets too confused in new settings.” 

“Oh, oh yeah, I understand,” I said affirmatively. But in retrospect, I didn’t fully understand. As a matter of fact, I didn’t understand a lot of things at that point.

We spoke briefly about possible travel dates and trying to coordinate them with her work schedule, as this was going to require her to make alternative childcare arrangements for their youngest daughter, whom Alex still drove to and from middle school. I told her that I would try to get back to her early the following week with all the details.

That afternoon I called Francesca, Dr. Farlow’s chief administrator for the AD program at IU Medical Center. She was wonderfully accommodating and friendly. With all due credit to Dr. Farlow, it was Francesca who made this trip happen. She was always available and encouraged me to call her at home if ever I couldn’t catch in her office (which was most of the time, as she is constantly on the go).

She scheduled Alex’s testing for Monday, November 8th, the earliest available time on the departmental calendar. It would involve MRI and PET brain scans, a battery of neuropsychological tests, blood work and cerebrospinal fluid sampling. Dr. Farlow had said that by virtue of all these, they could diagnose Early-Onset Alzheimer’s to within about a 98% certainty.

We would fly in on Sunday night, stay at a hotel right across the street, and begin bright and early Monday morning. The would be a very full day, but she said they could get the testing all done on Monday, and then put us back on a plane for home Tuesday morning.

My travel arrangements would of course be a bit more complicated. Both my going and coming would involve two separate flights. Going, I would travel from Nashville to Dallas, pick up Alex and continue on to Indy, and vice-versa on the return trip. But I was certainly up for it. In my mind this was as important as anything I’ve ever done, and I relished the opportunity to honor my little brother in so doing.

And the best part was that IU was picking up the bill for both the air travel and hotel. They would also reimburse me for cab expenses to and from the airports.

As I said, Francesca was a dream to work with. She really was all class and made a difficult situation very easy under obviously trying circumstances.

But she caught me a little off guard at the end of one our conversations before we left. She asked,
“Dr. Farlow wondered if you would be willing to serve as a control for your brother.”

“Control? What’s that?” I asked.

“It means he would like for you to go through the same tests as Alex, to serve as a basis for comparison to his results, since you’re of the same heredity,” she explained.

“Um…sure,” I said somewhat reluctantly. “Whatever you need me to do.”

My reluctance was based on the fact that I had done all this (with the exception of the MRI/PET scans) twelve years ago…and it sure as hell wasn’t any fun then. But hey, I was here to help, right? I knew that my discomfort would likely be only a fraction of my brother’s.

Within two days the arrangements were made and itineraries e-mailed.

I spent most of my waking hours the week leading up to the trip imagining what the experience would hold; how I would feel; the frame of mind Alex would be in.

I’d be lying if I said that I really had any idea of what I was in for.

Next: Indiana wants me

Monday, December 27, 2004

It’s Still Ticking (Part VI)

My Brother’s Keeper
Given that I am four years older than my brother Alex, and that we two are the youngest amongst the five brothers in my family, a significant part of my life has been devoted to looking after my little brother. I can’t remember it ever being a bother. In fact, for the majority of our childhood, we were inseparable. I don’t remember not wanting him around. We always hung out together. My Dad tells me, although I really don’t remember much of it, that I was the one who taught Alex to read, or at least encouraged him in that direction. We spent hours on end in the living room browsing our set of World Book Encyclopedias together. I do remember showing him how to use World Book’s companion “CycloTeacher” teaching aide. He took to that thing like a duck to water. By the time he was in First Grade, he could recite the entire list of U.S. Presidents from Washington to Nixon forwards and backwards.

I really can’t say when it was that I stopped believing in Santa Claus, but I’m sure that I kept Alex believing at least until he was in the fourth grade. I had him convinced that I had a direct telepathic connection with ol’ Saint Nick, and that I could — and would — rat him out for being bad if he didn’t do what I said. I know, I know…cruel, right? Don’t worry, it was always good-natured. I may have abused my powers occasionally, but I rarely mistreated my little brother. I always loved him and appreciated him for who he was: my friend. I always treated him as an equal. We played together as if we were the same age…except that when we played basketball, for a change, there was always somebody I could actually beat.

My senior year in High School, when I won the State Gymnastics Championship (C.I.F., Southern Section) on the Rings, my Dad and Maxine were in Hawaii celebrating their fifth wedding anniversary, but Alex was there. He was always my biggest fan and always traveled with the team to all my meets. But his presence this night I’ll never forget. After I’d won, from the stands he sprinted across the gym floor and leapt into my arms to congratulate me.

As young adults we double-dated, road-tripped and partied together. We got married the same year; raised our families together; bore our souls to one another.

So there was never any question about who would accompany Alex to Indianapolis. There was never any question in my mind as to whether or not I should. From the moment the opportunity presented itself, I knew that it was the sole purpose for my existence on earth at that moment in time.

However the way the opportunity came about was as unexpected as it was interesting. It required a rare, concerted effort from my family, with each member playing a role.

I’ve mentioned it before, here in my blog, that my wife marvels at the fact that as much as we all seem to like each other, my family communicates less than some mortal enemies. We rarely call each other; we forget birthdays and anniversaries. Nonetheless there are never any hurt feelings. We just know that we love and are loved by each other. Almost never has there been an issue or program that we’ve all interactively participated in. I guess it’s no surprise then, that it took an in-law, someone “outside” the family to set this odyssey in motion.

I mentioned in the previous installment, that my sister-in-law Marnie (Jack’s wife), is the person I credit with getting the ball rolling. She and Jack escalated their concerns about Alex to my Dad. At about the same time my stepsister Janice also became concerned with what she had heard in speaking with Alex on the phone and she contacted me as well.

Janice and I began exchanging e-mails and phone calls to discuss the situation. As always, I attempted to explain it all in the same context, as I understood it from Alex, continuing to turn a blind eye to the obvious truth that was staring everyone else in the face. However the back-channel communication continued, in, around, and in spite of my more-than-willing naivete.

How ironic it is that all during this same time of late summer, 2004, I had been writing in this blog about my family’s history in battling Alzheimer’s. I devoted three multi-part series to chronicling the successful role we all played in the research to locate the disease’s genetic marker, through which a test for diagnosing a person's proclivity to developing AD was developed.

I expressed the relief we all felt in believing that we had all, less my second-eldest brother David, escaped the family curse. Yet behind the scenes all throughout that same time period, these suspicions were swirling within my family about Alex. Finally, no more than two months after triumphantly declaring in this space that we had all beat the rap, the devastating realization began to set in that Alex most likely had not.

A deadening sense of dread began to settle over me. It affected my writing. It robbed me of my ambition. I just wanted to run away and hide.

In the midst of all of this, on a Saturday afternoon in mid-September, my brother TK called me out of the blue to talk about something else, but of course the conversation soon drifted to the subject of Alex. It was then that TK told me of the apparent first signs of Alex’s “difficulties” he witnessed when they worked together back in 2000. I’m inclined to believe that what he said was indeed the beginning of Alex’s AD onset, but who could have known; who could have really seen it even then?

More discussion with Janice and Dad followed, and I decided that I couldn’t stand by and wait any longer. I had to see him to see exactly what Alex’s condition was for myself. The not knowing was killing me.

In late September, I called Alex and told him that we all loved him and that our concerns were genuine, but that the difficulty we’d had communicating with him were making those concerns multiply. The conversation was warm, but I was devastated at what I was hearing. For it was the same thing that Marnie had expressed concern about three months earlier: the pauses; the listlessness; the lapses in thought. Alex gave me the same assurances that he had given Dad and doubtless, anyone else who would listen, “I don’t know exactly what’s wrong with me, but it’s not Alzheimer’s. I’m gonna be okay.”

I asked if he wouldn’t mind my coming down to spend a few days with him, and he responded enthusiastically. I said that I would try to make it sometime within the next month, depending on my project load at work. He said that would be great and that’s where we left it. I hung up the phone and broke down in tears. I felt so helpless. I would do what I could do to go and see my brother, assess the situation — but then what? How could I help him if he didn’t want help?

Was I over-reacting? Was I reaching too far? I was absolutely torn up inside.

The next day I called my Dad and stepsister to tell them of my conversation with Alex and my plans to go visit him in October. Dad related this to TK and that’s when the wheels really began to turn. TK contacted Dr. Farlow at Indiana University Medical Center, who expressed a significant interest in seeing Alex. He said that because of the relationship of our family to the research program of which so many of our family had been a part throughout the years, he would be happy to examine Alex and get him whatever help he could. TK, knowing that neither Alex nor I could very well afford such a jaunt, asked Dr. Farlow if he’d authorize IU to pay the travel expenses and he happily agreed.

The next step, of course, was to inform me! It was surreal at how much a whirlwind experience that conversation was! My Dad and TK conference-called to offer me the plan, which would completely re-vamp my previous course of action. Instead of going down to Dallas to spend a few days with Alex, I’d be going there to pick him up, fly with him to IU, have him checked out, and then fly him back home.

Not that I would have, but how could I refuse? This was exactly what needed to be done, and I immediately recognized it as my destiny and purpose. Everyone knew that I was the only one who could convince Alex’s wife Saraph to go along with such a plan. It had never appeared that she really much cared for anyone else in my family, but no doubt because of my close relationship with Alex, she and I had always gotten along well.

The world as she knew it had collapsed a year earlier with her local doctors’ recommendation that Alex be considered permanently disabled, so certainly no one could blame Saraph for circling the wagons. This woman, with a MENSA I.Q. but no college degree was thrust into the position of breadwinner for a family of five accustomed to operating on a six-figure income. She took on three concurrent part-time jobs, because no one would hire her full-time for more than minimum wage. She was additionally forced to do the lion’s share of the work required to scale down their lifestyle, including the sale of the big home that they could no longer afford, in favor of a one with a more modest mortgage.

Of course, the details of the hell that was now her life weren’t exactly being shouted from the rooftops toward our inclining ears. Saraph was working her ass off to keep her family’s head above water. She neither had the inclination nor the time to notify Alex’s family of her struggles. She didn’t want our family’s help and didn’t need our sympathy. She had all the support she needed through their local circle of friends in Dallas.

However it’s not fair to lay the blame at her feet for the lack of communication. I would learn in talking to her that because of her insane work schedule, she simply wasn’t home all that much. And most of the time, if someone would call, and Alex would pick up the phone, but forget to write down the message, or even tell her that someone had called.

Fortunately, she did receive the voicemail message that I left on Sunday night, October 17th. I told her of Dr. Farlow’s generous offer, and that I really needed to speak to her. She called me back early the next morning, but her demeanor was less cooperative than I’d hoped.

She explained to me that her original inclination was to believe that her husband indeed did have Alzheimer’s disease, but that she was convinced otherwise by the psychiatrist who was treating Alex at the time. He made the quite plausible argument that it was the cumulative effects of the sleep apnea, exacerbated by severe depression causing Alex’s problems. The good news they thought, was that it was fully treatable and quite possibly reversible. Alex might even be able to one day resume his career as an attorney.

No wonder she almost casually dismissed Dr. Farlow’s offer. “No, not really AJ,” she replied, when I asked if she would want to explore getting a second opinion at IU. “I’m not really all that impressed by Dr. Farlow, y’know? I’ve done a little research on Alzheimer’s myself and I never see his name mentioned. I’m sorry, but I’m just not convinced that he’s all that great,” she added matter-of-factly.

She continued, “What no one on the outside realizes is that I’ve been working with a whole group of doctors for over a year. I haven’t been sitting on my hands. No, I haven’t been talking to the family about it a lot, but that doesn’t mean we haven’t been trying to get something done. We’ve got some pretty good doctors down here in Dallas, you know. Besides, I’m supposed to get the final diagnosis back from them in 10 days, on October 27th.”

I tried to counter by reminding her that there are a lot of doctors working with AD patients, but not many with the expertise and background on the type that effects our family. I related the information that Dr. Farlow’s comments to my Dad in a conversation last summer regarding the strides being made with the new AD medications that are now available, and how they had proved so successful in slowing down the progress of the disease. I emphasized that because of our family’s rapidly-advancing AD strain, time was of the essence in placing Alex in the best position possible to retain what faculties he still has.

“I mean, wouldn’t you want to know for sure, from the experts?” I asked.

“Oh, you mean the ‘experts’ who told you guys that you weren’t going to get Alzheimer’s? C’mon now AJ…” she said with a sarcastic chuckle.

Of course I had no comeback. This was long before I had realized the error that we all made in judging the research, which we thought placed us in the clear. I felt my stomach tighten. I swallowed hard and reminded myself all that this woman has been through. I couldn’t allow myself to take her comment as a personal insult.

I asked her to at least to consider it, after all, it wasn’t going to cost her anything, and that’s certainly something she couldn’t say about the group she was working with there. She agreed, but only pending the final diagnosis by the local doctors; she would do nothing prior to that. She told me she would call me on either the 27th or 28th, depending on what time of day she actually got the results.

Additionally, while her rather defensive posture didn’t bode well for the likelihood that this trip would actually happen, I did ask, if the results ruled out the possibility of AD in her mind, could I still come to visit Alex for a few days as I had originally planned. She said, “Of course, that would be great!” So I knew at least that she wasn’t mad at me. She was just, quite simply, confident of the preliminary diagnosis that her local doctors had given.

It would prove to be a confidence misplaced.

Next: My brother’s keeper (continued)

It’s Still Ticking (Part V)

A Golden Boy tarnished
The family curse would be been cruel enough for just being in existence, but it almost seems as though it actually has some sort of dastardly purpose in its selection of whom it claims. I’m sure there’s no scientific basis for it, but in almost every case, the members of my family to whom the AD gene has been passed have been among the best and brightest from their respective branch of the family tree. That serves to make the sorrow even more bitter; the losses even more steep.

In the case of my immediate family, the shock of learning that Alex carried the dreaded AD gene has been by far the bitterest pill of all for me to swallow. This is particularly so in light of the fact that we had previously believed that we were all cleared. Sadly for Alex, what we had assumed was a clean slate turned out in fact to be one that was impossibly soiled.

I’m not ready to eulogize my brother just yet. While he will never be the same, he certainly has a lot more life to live, and I really need to keep that fact in mind. Since our return from Indianapolis in November, he has been able to get on some of the new Alzheimer’s drugs that Dr. Farlow had touted to me earlier. So far he’s doing well. Hopefully he’ll stabilize and be able to keep what he has for a number of years longer than otherwise normal for an EOAD sufferer.

However the difference between the person I had last seen in the Fall of 2002 and the one I spent three days with last month were as different as night and day. Our family’s golden boy, once so brilliant and gleaming, was now tarnished and lackluster. I knew going in that he would be different; I just didn’t realize how much so.

Alex has lived in Dallas for the better part of the last twelve years with his wife and three children. Until his recent difficulties over the last couple of years he was a successful attorney, working for a large and prestigious international law firm. In 1999 he accepted the invitation to become corporate counsel for a new business interest of our entrepreneur-brother, TK. It was following this stint that he began having difficulty holding down subsequent jobs. And while it would be easy to immediately blame Alzheimer’s for all of his problems, I’m still uncertain as to exactly when his onset truly became a contributing factor.

Regardless of the exact starting point of Alex’s illness, his demise was so well masked by its own imposing improbability that no one could believe that it could be anything but just a run of bad luck. It just didn’t seem possible that performance could have had anything to do with his unlikely fall from grace. He went through three law firm jobs in two years, and left everyone in the family scratching their heads, muttering, “What’s UP with him anyway?”

After all, this was the golden boy; the star of the family; the one who was second in his class in law school and had interned for U.S. Supreme Court Justices Sandra Day O’Connor and Antonin Scalia. Alex quickly became a star for his law firm, registering high marks for his work defending their client American Airlines in a landmark anti-trust defense in the early 90s. He seemed to be on a track for success that the rest of us could only dream of attaining. He was the one for whom everyone’s chest swelled with pride. Everyone bragged on Alex. He made us all feel like superstars. He made us all feel invincible.

But now his rising star had begun to fall, and nobody could figure out why.

AJ & Alex: The Lost Years
The years 2001 to 2004 were sort of the “lost years” in my relationship with my brother. In August, 2002 Michelle and I saw him briefly on our way back from moving our daughter Amy to her freshman dorms at Abilene Christian University in Abilene, TX (she subsequently transferred to UT Chattanooga the following year, much to the delight of our bank account). That would be the last time I’d see him until this trip.

The two years prior to and after that last visit, I’d had little to no communication with him. What few phone calls there were almost exclusively came from me to him — it was almost never the other way around.

It was so frustrating. This brother with whom I had always been so close, and with whom I routinely had at least one phone conversation per month with, no longer returned my calls. As time went on, it became increasingly rare for anyone at his house to pick up the phone at all. All incoming calls were screened. Unbeknown to us, the bill collectors were even more interested in talking with my brother than I was.

It was during this time of non-communication that I sadly began to believe that my brother was hiding behind an impenetrable wall of pride. I found my own heart growing more and more calloused to the struggles that everyone knew he and his family were experiencing, yet was refusing to talk about or even admit to. In hindsight I’m having a hard time forgiving myself for that attitude, because I can’t help but think that if I had fought a little harder to break through, I could have done something…anything to bring the true culprit for Alex’s personal calamity to light. However, the reality I now have to remind myself of is that you can’t help someone who doesn’t want it. Nonetheless, that doesn't excuse the fact that I hardened my heart against my beloved little brother when I should have been loving and encouraging him all the more.

But I guess I’m just human, and one can only receive the cold shoulder so many times before you just have to say, “screw it.” And while I feel horrible about it now, I felt just as bad about Alex’s seeming unwillingness to confide in me as I had in him for so many years; the years when I was the one constantly in financial straits and he was living the good life. Perhaps that role reversal was more than he wanted to deal with, and in hindsight I can understand that. But even when we did talk over the course of the past three years, he never would admit to there being any money problems despite common knowledge to the contrary throughout the family.

But whether it was pride, confusion or shame that caused Alex to close himself off from us makes little difference now. There’s no room for hard feelings or regret. The time that we have left with him is scarce. Making the most of it is now all that matters.

Of course hindsight is 20/20, but turning back the clock a few months, the entire picture was still pretty murky. The unintentional smokescreens being thrown out by Alex and his wife, beginning in the Fall of 2003, cast just enough light on the subject that it was actually possible to both discount AD as the cause and provide hope that Alex could actually recover. From the beginning, we were assured that there was no cause for alarm and that the doctors had everything under control.

As I wrote briefly of here, he first he was diagnosed with sleep apnea, which under severe enough conditions can cause denentia-like symptoms. Coupled with the sleep apnea, local doctors also gave a preliminary diagnosis of severe depression, both causing and explaining Alex’s inability to hold down a job.

That was their story and they were sticking to it, so that’s what I believed. I couldn’t allow myself to believe anything else. However there were others in the family who weren’t so easily convinced, and one sister-in-law, by her insistence that she believed that there could be something more than sleep apnea responsible for Alex’s remarkable demise, set into motion a series of events, culminating in Alex and my trip to Indianapolis.

Marnie on a mission
It began last June when my eldest brother Jack had pre-emptive heart bypass surgery to head off what doctors informed him was an inevitable heart attack. Fortunately, he came through his triple-bypass procedure with flying colors. When Jack came out of surgery that evening, his wife Marnie began calling the family to give us the good news that Jack was going to be fine.

When she called, after giving me the progress report on Jack, Marnie mentioned that she had spoken to Alex prior to calling me. Nothing was spoken of regarding his own health, but she indicated that she was fairly troubled with what she’d heard in his voice.

“AJ, Um, have you talked to Alex lately?” She asked, with a tone of heavy concern. “Yes, as a matter of fact, a couple weeks ago on his birthday. Why?”

Now I knew what she was going to say, or at least I thought I did. The conversation I’d had with Alex just a matter of two weeks prior was still fresh in my mind. He had told me how the doctors were still trying to find out for sure what was going on, but that when he remembered to take his meds that everything was copacetic. He admitted to the fact that, yes, he sometimes had trouble expressing himself verbally, and that was why he would sometimes pause and lose his train of thought, but that was due to the medications he was on.

It was a convincing argument, and I bought it. However Marnie hadn’t heard the explanation, so naturally her initial reaction was one of alarm at the marked difference in the way he sounded over the phone. Up to that point I didn’t really know how much, if anything, Alex had told Jack and Marnie, who they rarely communicated with, but I felt that I should try assuage the concern I heard in her voice.

“AJ, she said, “He sounded really strange! I’ve never heard him like that. He was stammering…taking long pauses between saying things…losing his train of thought…”

“He sounded like he has Alzheimer’s disease.”

“No, no, no, Marnie,” I assured. “He doesn’t have Alzheimer’s, but he is having problems. He explained it all to me a couple weeks ago…” And I proceeded to then explain the sleep apnea and depression angle as Alex had sold it to me when he was first preliminarily diagnosed in the Fall of 2003, and then again when I spoke to him in May. I assured my sister-in-law that while he indeed wasn’t well, he was being treated and that his doctors were confident in bringing him back to health.

Marnie didn’t seem convinced, but accepted my explanation. And after a few more minutes of chitchat, I thanked her for the update on Jack, and we said goodnight. I still believed that Alex was, as he had told me, “going to be alright,” but Marnie’s alarm began to, for the first time, set off a few bells in my own mind. It was the first time I had actually heard someone mention AD and my brother’s condition in the same sentence. However I steadfastly remained optimistic and quickly put those ‘what-if’ thoughts as far out of my mind as I could.

However, Marnie was unwilling to let it go. Several weeks later when her husband was back on his feet, she and Jack contacted my Dad and one thing led to another. Within a matter of weeks there was cross-involvement with nearly everyone in my immediate family, including my older brother TK, who I rarely get to see, as he splits time between Pasadena, California and Taiwan, where his wife and children now live.

I still just wanted to believe that it was all somehow a coincidence, but now the grim realization was beginning to seep in.

My Dad called Alex often, but rarely would my brother pick up the phone. In August, on Alex and Saraph’s 25th wedding anniversary Dad called to wish them congratulations on the landmark occasion. When he told me later that Alex was unaware that the day even was his anniversary, I think I finally knew. But did Alex? On more than one occasion when talking to Dad, he would offer him reassurance, “Dad, I had a CAT scan — it came up clean! I DON’T have Alzheimer’s!” Unfortunately, my brother didn’t know that CAT scans are not always detailed enough to be able to accurately report the cerebral damage that AD causes. So whether or not Alex actually believed his own assessment, his point was moot.

More phone calls ensued. My stepsister, who was extremely concerned, and I spoke for hours on the phone about the dilemma we faced as the ‘meddling family.’ It was obvious that Saraph, who by now was completely supporting the family and making all decisions regarding her husband’s care, was operating in “siege mode.” She was doing what she felt she could do in working with the doctors who continued to insist that Alex’s problems were borne of depression, and not Alzheimer’s.

Unfortunately at that point we didn’t know the full story of what was going on with regard to Alex’s medical situation, so it made it that much harder to feel at ease; although when we finally did learn about it, it made me feel even less so.

Next: My Brother’s Keeper

Saturday, December 18, 2004

Christmas Break

I'm not convinced that I'll be able to (in fact I'm reasonably sure that I won't) finish my current series before Christmas Day. And since I know that due to people traveling and attending Holiday-related events, not to mention shopping, there will be fewer and fewer folks spending time in Blogland for the next couple weeks. So I decided to make this break in story posts to wish you all a wonderful Christmas and Holiday season.

I mean it from the bottom of my heart when I say that the gift of relationship with you all has been the best thing that has happened to me in a lot of years. Blogland is without a doubt the best Christmas gift I could have wished for this year.

I'm gonna be plenty busy this weekend, doing the bulk of my shopping, so I may or may not have time to get the next segment written before next week. So in the meantime please accept my graditude, respect, thanks and love for reading, commenting and sharing this blog with me.

Happy Holidays my friends! And may God bless us, every one.


Thursday, December 16, 2004

It’s Still Ticking (Part IV)

Not quite the Road Trippin' I had in mind
For guys, the road trip is a rite of manhood. It signifies the tribal bonding instinct of our gender on a number of fronts. It represents freedom, friendship and trust. And it’s usually a helluva lot of fun.

Road trippin' with my two favorite allies
Fully loaded, we got snacks and supplies
It's time to leave this town, it's time to steal away
Let's go get lost, anywhere in the U.S.A.
Let's go get lost, let's go get lost
Blue you sit so pretty, West of the one
Sparkles light with yellow icing
Just a mirror for the sun

— Red Hot Chili Peppers

How ironic it is that while we were all together in April 1992 to take part in the Alzheimer’s testing at IU Medical Center, my brother Alex and I had one of the best times together of our entire lives. I have no way of knowing for sure now, but I believe the testing was to conclude on a Wednesday or Thursday, but we weren’t flying home until the weekend. So we decided that when the tests were over, we’d go up to Chicago to take in a baseball game. I had always wanted to visit Wrigley Field, the hallowed home of the Chicago Cubs. Our older brother TK lived in the Chicago burbs at the time, so the situation was perfect. Alex and I drove up together the day before and the three brothers reveled together that evening.

TK’s house backed up to a large wooded field and his backyard featured a big home-made fire pit. We built a huge bonfire and cooked bratwurst, wrapping them in aluminum foil with chopped onion and green pepper, and burying them in the hot embers. MAN were they good! I will NEVER forget how good those brats tasted!

TK, Alex and I ate brats and drank beer; laughed and told stories all night long. We simply had the most awesome time imaginable.

The next morning we all drove into Chicago around 10:00 AM and took the “L” Train to Wrigley Field. It was my first visit to the storied old ballpark. What a great place! And what you don’t know until you actually go there is that the entire area around Wrigley is one big, continuous party zone! Shops, bars and restaurants, all clumped together make it an exhilarating but safe wonderland of fun.

Our seats were down in the right field corner. The Cubs beat the Philadelphia Phillies that day. I don’t remember paying much attention to the game; I was too busy soaking in the experience. But I’ll always remember the stadium. We had a great time in Chicago, but Alex and I decided, heck, while we’re up here, might as well go for two!

Early the next morning we headed out for Detroit, where the Detroit Tigers were hosting my favorite team, the Angels, who were still known as the California Angels back then. Of course you know whose idea it was to go to this one, right?

Old Tiger Stadium was another great old ballpark that was on its last legs in 1992. Situated at the corner of Michigan and Trumbull, the surrounding combination business and residential neighborhood had become a ghetto, but in the daylight I never felt a bit of trepidation. In fact the locals, while a little rough looking, were more than friendly. They had a nice little business going, as three or four separate residents that we could see in the residential area directly adjacent to the park ran makeshift parking lots in their yards. You see, they didn’t call Tiger Stadium “The Corner” for nothing. It literally was on the corner of Michigan and Trumbull. We’re talking zero lot-lines; the sidewalk met the exterior stadium walls. There was practically no parking lot on the stadium grounds. Instead you had to park in a number of off-campus lots scattered around the area, or the main, yet small lot in the area behind the stadium. I’m not sure why we chose to park in the residential area, maybe it was the most accessible, and we’d never been there before.

At any rate, we paid the man 10 bucks and parked in his front yard. He would sit on the porch and watch guard over our vehicle, situated in a row of four others for the day.

A half a block later we were at the gates of the grand ol’ ballpark gazing at the same brilliant green grass previously graced by the likes of baseball immortals, Cobb, Ruth, Gehrig, Foxx, DiMaggio, and Williams.

I felt like I was sitting in a shrine, again with soaking up the experience being my primary focus rather than the game itself. The fact that the Angels won the game handily only added to the magic of the moment for yours truly.

And while my description might otherwise lead you to believe that I was by myself that day, I, of course was not. Alex was a huge part of it all.

Before heading back to Indiana, we took a quick trip across the bridge into Windsor, Ontario. We stopped by the first decent-looking bar we came across and had a beer, so that we could say that we’d had a drink in Canada.

The five-or-so-hour-drive back was another epic AJ & Alex Summit. We talked about everything under the sun, most of which has never left the confines of the rental car in which we were traveling. That two day road trip will be forever etched in my mind as the best time I’ve ever had Alex (with that notable night out clubbing in Nashville two years later coming in a close second). However this ’92 trip gets the nod if for no other reason that we were sober for 90% of the time and still had fun.

What we did do was talk, clearing the bases so to speak of all the issues in our lives. Sure, we spent a good portion of the time talking sports, but that’s a given in my family. But in addition to that, the depth of the personal stuff we covered was amazing. That was always the hallmark of Alex and my times together. Sometimes we would talk a lot, other times not much at all, yet we always seemed to be in tune with each other.

He confided in me things that I’m pretty sure he never told anyone else. I know for a fact that I did the same with him. He was my touchstone for sanity above all others. No matter how “un-AJ-like” the thought or idea that I just had to get out of my head was, I knew I could say it to him without fear of reprisal or judgment. Ohmigod, how I miss those days! But then again, we were young, stupid and a lot less wise than we gave ourselves credit for being. We grew up together. Even though I’m four years his senior, I always considered Alex an equal. He says that I was someone he looked up to, but I looked up to him just as much.

Growing old together
Typically the phrase “growing old together” conjures images of a man and woman in the golden years of their lives having fun, enjoying the finer things; exploring the world in a way that they never had the time to do when they were younger. It speaks to the ripening of an already beautiful relationship, and the deepening of a love everlasting. I look forward to growing old with my Michelle.

But I also looked forward to growing old with my little brother.

That 1992 road trip to Chicago and Detroit set the bar as something I always hoped to duplicate someday, but the years never seemed to present the opportunity. Alex spent a lot of the little free time he had with his family, and who was I to begrudge him that? I just figured that eventually there would come a time in both of our lives when we would be able to see each other more often, perhaps even take another road trip or two.

I had tried off and on to get the ball rolling. In August 2001 I saw a golden opportunity to have a great time and satisfy one of my all-time sports dreams — to attend an induction ceremony at the Pro Football Hall of Fame in Canton, Ohio.

The HOF class that year was spectacular, featuring the induction of two of my favorite NFL team, the St. Louis Rams’ all-time greatest players. Better still, the Rams were playing in the Hall of Fame Game that weekend, on the HOF grounds there in Canton. The HOF game is the traditional start of the NFL preseason. It was something I saw as perhaps a once-in-a-lifetime opportunity.

At that point it was fairly common knowledge that Alex and his family were beginning to struggle, although at the time everyone simply attributed it to nothing more than bad luck. I was prepared to offer to pay for the whole shebang, if only my little brother would join me. He declined, however, saying that the week in question was the time he and his family were scheduled to have use of their timeshare in Vermont, and he couldn’t change it.

I know I shouldn’t have been, but inwardly I was so indignant that I could scream. I mean, here he’s struggling to keep his mortgage from being foreclosed on and he's still paying for a freaking TIMESHARE? What was the matter with him? Why couldn’t he see it? This was gonna be epic! This was gonna be great! This was gonna be another dream come true.

And it was obviously, incredibly selfish of me to think that. It just wasn’t meant to be. I just needed to get over it and move on.

I remained optimistic though. Surely there would be other opportunities, later on, when he finally slowed down; when the 20-hour workdays he routinely put in would at last become intolerable; when he’d finally realize that he needed to enjoy life a little more. He’d come around and I’d be waiting.

I never once thought that it would happen under such a circumstance as fate would deliver to us later.

I remember feeling more than a little guilty at the twinge of pleasure I received a year ago when first hearing that Alex’s doctors had permanently disabled him, due to what they attributed were the severe effects of the sleep apnea and depression they’d diagnosed him with. It was their initial attempt to explain Alex’s sudden decline in performance and subsequent failure at the three law firm positions he went through in a two-year span. Nobody even considered that it could be Alzheimer’s disease.

Of course I was justified in my selfish glee by the certainty that his condition was treatable, and that we all knew that he would be alright again at some point in the future. But perhaps in the meantime we could indeed make up for what had now become years of little or no contact or get-togethers; perhaps he could fly up to Nashville or I to Dallas — and recapture our brotherly camaraderie from days of old. I remember telling him over the phone, “Well the good part is, now maybe you and I will be able to spend a little more time together.” He agreed. Little did I know that our long-awaited road trip would more than likely be the last one we’d ever take together, and would be nothing like the experience I had looked forward to for the previous twelve-plus years.

Next: A Golden Boy tarnished

Monday, December 13, 2004

It’s Still Ticking (Part III)

Just when I thought that I was out…they pull me back in!
Not that I consider myself a movie aficionado like a lot of people, but I definitely enjoy ‘em. And there are a few movies — and movie quotes — that I dwell upon and allow to spin around in my mind from time to time. While the persona might be a bit of a stretch, one character whose life I can’t help but identify with to some degree is The Godfather’s Michael Corleone.

No, I’m not a gangstah…work with me, people.

If you’re familiar with Godfather trilogy, you know that it revolves around a primary character whose essence is a mixture of a man who is a victim of his circumstances and a one who sells his soul to power. In the beginning he is innocent and idealistic; unwilling to become a party to “the family business.” However as the story builds he is overcome by a destiny that he did not choose and becomes the very thing he despised.

Then later in his later years, when he is able to finally reevaluate his life, he decides to walk away from his past and embrace a new, positive future. Yet his destiny again steps in and reminds him of who he really is.
“Just when I thought that I was out…they pull me back in!”
— Michael Corleone, The GodFather, Part III

I feel like that sometimes with regards to the family curse. I’m sure that my brother Alex does right now. Not to say that we ever did anything to deserve what has befallen our family. With all due respect to my brother TK, I don’t think that this is an issue of karma. Sometimes things just are what they are. We will never know why, so there’s no reason to be angry or bitter. Things “is what they is.” In that regard, I know that Alex is at peace. However there continues to be one thing that haunts me, not only for the obviousness of it, but most importantly, for its potential consequences toward Alex.

So who goofed? Dr. Farlow? Nope. The Lancet Report? Negatory. My 3rd grade Elementary School teacher? Maybe. Me? Most definitely.

Me? You’ve gotta be joking! What could I have done that would have any effect on whether or not Alex has Alzheimer’s disease?

It was nothing anyone in the family or I did, but rather what we didn’t do.


That’s all we would have had to do in order to know, all the way back in 1993, that at least three more of my family members could potentially be carriers of the genetic mutation that leads to Early Onset Alzheimer’s disease (EOAD) in my family. It was right there in black and white in the Lancet report; not lying hidden amongst sentences of fifteen-dollar words, but plainly visible — not just once, but twice. There were just so many trees…I just couldn’t see that there was a forest there staring me in the face.

What was it? See if you can figure it out from the highlighted Lancet excerpt below.

Did you see it? It’s one word. One word that I never cognitively added into the equation from the first read in August 1992, until just a few weeks ago as I began to prepare for this story.

Six — as in “CSF was collected from six members of the family (aged 31-45 years) by sterile lumbar puncture.” Why is the number six so important? Because there were TEN of us, that’s why! Six out of ten genetic samples were used in the study, when all the while we thought that ALL of us were included, thereby leaving no one to chance. The upshot, of course, is while we thought that we were all accounted for in the study, we were in fact not. And that left the possibility that one or more of us still retained the possibility of bearing the AD gene in addition to the three that were included and so indicated in the Lancet report testing.

There are a few points of minutiae (sorry Todd…) that I need to mete out at this point which I hope will not serve to muddy the waters any further, but need to be noted, so please stay with me.
  • I’m just lookin at some tush…(Say WHAT, Doc?)
    While there were ten members of Generation III who were involved in the testing, only nine were actually eligible for inclusion in the final test study. One was removed for consideration at the last minute. This is something that we did not learn until a couple years afterward. It is just another clue that went unnoticed, but one that was clearly visible in the Lancet report. However the clue itself is also one of the primary elements that masked the truth from me. Whether the same could be said for the others in my family who believed the same as I did, I cannot say.

    It involves my cousin Kay, who at age 48 was by three years the eldest of the ten Gen3 family members in 1992. Yet the Lancet report says that the age range of the family members was 31-45. My Eldest brother Jack was 45 years old at the time of the testing, so clearly he was the end of that spectrum. Why wasn’t Kay included in the group? It’s actually a rather funny story.

    When Dr. Farlow called us all up to Indianapolis for the testing in April, 1992, it was somewhat of a staggered rotation. For example, all of my immediate family was there at the same time, but none of my cousins were. The two other extended family groups either preceded or came in after us. That’s why I still haven’t seen my cousin Cheryl since the 60s. She and Denise tested at a different time than my brothers and me. Likewise, the children of my Uncle Matt, of whom Kay was the eldest of his three children.

    According to the story I would hear two years later, from her younger sister, Janice, she and Kay were in the unenviable position of having their CSF and blood samples taken. The cerebrospinal fluid was drawn via a spinal tap, which if you’ve never had one done, is one of the more unpleasant experiences in life in my opinion. They ask you to remove your clothes and don a hospital gown — you know, the ones that open all the way up the back? You then lie down completely motionless on an exam table while they stick a syringe needle into your spine down around the tailbone to draw out the spinal fluid. It’s a painful and nauseating experience to be sure.

    But as Kay was lying on the table, her backside exposed from head to toe, the attendant who was conducting the CSF extraction, assumedly to lighten the mood and place her at ease, made a quite unfortunate — and uncalled for statement.

    “Has anyone ever told you that you have a nice tush?” He said. Receiving it in the spirit it was received, Kay deadpanned, “Sure, my husband tells me that all the time” or something to that effect. I’m sure the two of them laughed and thought that was the end of it, but no. Kay mentioned the comment to her husband, and all hell broke loose. He was furious. He forbade Dr, Farlow from using Kay in the study and spirited her off, back home to California. Of course no one knew until later that Kay had been removed from the study, but the fact that this incident occurred played a large role in obscuring the focus that we should have had — that I should have had — when we examined the data.

    As fate would have it, it turned out that in fact Kay did carry the gene. She began showing signs in the mid–to-late 90s and passed away just five weeks after Maxine, in July of 2000, at the relatively advanced age (for our family’s onset-to-death history) of 56. I believe that had she been included in the IU study and shown to test positive in the report, perhaps we would have paid a little more attention; perhaps we would have looked a bit more closely into what the Lancet report was actually saying. I don’t know for sure what the difference it would have made, but I can’t help but believe that her exclusion was just one more invisible distraction to our seeing the truth.

  • Semantics?
    The following may be the most convoluted of all, but in my understanding of myself I find it to be the most likely of all explanations for my gloss-over of the study participants number. I know how my mind works. I’ll be the first to admit that I have no qualms about asking for directions when I’m lost. If the teacher explained something in school that everyone else seemed to understand, but I didn’t, my butt was up at her desk as soon as class was over, asking questions. So when the Lancet report came out, written in a manner pointedly intended for those of the scholarly persuasion to understand, I was more than happy when cousin Samantha sent me the Associated Press article, which capsulized the study in terms a non-geneticist could digest.

    Who needs the scientific mumbo-jumbo when you have the explanation in plain English? Consequently, I may have skimmed through the Lancet report a few times, but I don't recall ever really reading it until just a few months ago — and I still didn't get it until just recently.

    The AP article pretty much explained the whole thing, I thought, in a clear and concise way. And I still think that, with one notable exception. But after now having the advantage of time and analysis, and most importantly the reality of knowing that Alex has AD, that one notable exception is significant. I believe that there was a misunderstanding on the part of either the article’s author or his editor in a key paragraph of the story. It’s extremely subtle, but sufficient to further obscure the otherwise obvious concept of there being of six — not ten family participants in the study.

    Again, below is the detail excerpt from the Lancet report:

    Look again at the first highlighted sentence. “CSF was collected from six members of the family (aged 31-45 years) by sterile lumbar puncture.” Now does the location of the parentheses indicate that the six selected members are aged 31-45 years, or is it saying that the entire family group was aged 31-45 years? Semantics, yes, but it is an extremely important point. You see, 31-45 was the exact span of ages for my family alone. The remaining four cousins just happened to fall within that same span, except for Kay, whom we didn’t know wasn’t included until well after the report came out.

    Never bothering to reconcile the fact that the math didn’t work, I always assumed that because all of our ages were included, all of my brothers and I were a part of the final test group — just because of the casual wording of that sentence.

    It appears the author and/or editor of the AP article must have thought the age range was referring to the final test group as well. The article's paraphrase of the age-range statement further inferred that understanding by eliminating the parenthesis altogether.

    And since I spent little time trying to decipher the difficult-to-read Lancet report in favor of the more layman-friendly AP version, this idea became cemented into my understanding of our entire circumstance.

    I don’t believe there to have been any irresponsibility on the part of either Dr. Farlow’s group or the writer of the AP article. The irresponsibility falls squarely upon my family and myself, who wanted to fudge a diagnosis out of that which was never ever intended to be a diagnostic vehicle. The IU study and published reports were intended only for their research value. If Dr. Farlow’s group is at fault at all it’s that they made it too easy to connect the dots. I learned in discussing this with some of the IU personnel on my recent trip there with Alex that it is not uncommon for researchers to deliberately switch around potentially identifying data such as age or sex for the purpose of obscuring identities in the publishing of a research white paper.

    The fact of the matter is that we should have all gone through the appropriate channels to learn of our own genetic disposition with regard to Alzheimer’s. And just because it wasn’t possible in the beginning, we should have followed through at such a time when our financial standing made it so. We shouldn’t have assumed that we weren’t at risk, regardless of the inference of a research paper which itself left wide open the fact that three of the possible nine in the test pool weren’t even included in the final results, if we’d bothered to open our eyes and see it.

    Like I’ve said before, I’m not a doctor or a scientist — and it’s probably a good thing. Based on my exhibition of thoroughness in thinking all of this through, I probably wouldn’t be a very good one. I suppose everyone else fell into the same trap. Not once did any of my family offer up a “but what if” scenario. We were all secure in the alleged knowledge that we had fought the dragon and all except our beloved David dodged the beast's fiery breath. They say “ignorance is bliss.” Well we were a pretty blissful bunch. It was a sober bliss, but bliss nonetheless.

    But what does it matter, really? After all it was inevitable. Why then such regret? Only that if Alex had known that there was a possibility of his developing EOAD, he might have been able to avail himself of treatment sooner. Our cousins Denise and Cheryl were pioneers in the testing of Alzheimer’s drugs, and the results were and still are significant in delaying the debilitating dementia that rapidly overtakes AD sufferers within a few years of onset. If treated early, Alex could have retained much more of what he has already lost for who knows how much longer. No AD drug will be effective forever, but the strides that have been made in the past few years are highly significant. And that is the basis of my regret and sorrow for my little brother; that he could have taken advantage of that and perhaps, kept more of himself, for longer.
A final note on the Lancet Report
I first posted hyperlinks to the Lancet and Associated Press articles in the previous blog entry of this series and some of you actually dove in and offered some legitimate questions as to what “the mistake” actually was. I hope you understand that there was no mistake with the APP-related test, which was the subject of this study. The test was not the method by which the final determination of genetic disposition was made, but rather an attempt to find an easily detectable “smoking gun” that would raise the red flag of indication that the subject indeed is a carrier of the genetic point mutation. Some of you have related to me the fact that parts of the study seem to admit to the test as being not entirely conclusive in its own assertion that the APP levels always indicate the presence of the mutation. And while that is true, it still does not invalidate the test as valid research. As I indicated previously, this research has successfully spring-boarded further research efforts in related areas, so it has indeed been both successful and fruitful.

So please believe me when I say that I harbor no ill will toward anyone at IU Medical Center. I no longer ask “how could they have allowed this to happen?” It was not their responsibility to tell Alex that he had the gene. When I asked Dr. Farlow in October to explain why we could have been so wrong to assume we all were in the clear when the ’92 research indicated just that, he seemed dumbfounded. “I’m sorry AJ, but I don’t know what you’re talking about.” I went on to explain how we had kind of used the research to connect the dots regarding our own disposition and he told me that research is research, and is never intended for use as diagnosis. He went on to say that when a person submits himself or herself for diagnosis of the AD gene, they triple-test to make absolutely sure.

We on the other hand, opted for the shortcut.

Therefore while I am saddened irrevocably for Alex, I’m also sobered by the reality that I too may be one of the three whose DNA was not part of the final test group, meaning that I might also carry the AD gene myself. I’m somewhat buoyed by the fact that at age 48 I have yet to experience any difficulties with my memory (well no moreso than I have all the rest of my life, at any rate) or show any other signs of onset. And even though this doesn’t necessarily clear me, it does make it a bit less likely. All in my family so far who were AD victims over the three generations have shown some sort of onset by age 45 with the notable exception of my grandfather and cousin Kay. They were both of somewhat indeterminable onset age, but didn’t die until their late 50s. So I can’t take too much comfort in the fact that I’m still symptom-free. I may simply be looking at a later onset than the majority of my affected family members.

However, sometime within the next few weeks I will know for sure. While at IU in November, in addition to acting as a “control” counterpart for my brother’s tests, I submitted my request to find out definitively if the family time bomb ticks for yours truly.

Michelle knows me so well. When I spoke to her on the phone from Indy about my decision to go ahead and find out, she completely agreed. I don’t know whether or not she was trying to lighten the mood, but she wasn’t laughing when she added, “You really do need to find out, because if you do have it, you’ve got a helluva lot of writing to do.”

Next: Not quite the “Road Trippin'” I had in mind

Friday, December 10, 2004

It’s Still Ticking (Part II)

Loose Lips
If you’re old enough to have parents who either served in or lived through WWII, you might be familiar with a credo that was drilled into the head of every American soldier, Loose Lips Sink Ships. It was a slogan that was used to remind those civilians, drafted or otherwise, not pre-trained in military protocol. Its basic message is, if you want us to win this war, rule #1 is, shut yer fat yapper!

In its original context, the saying was focusing primarily on soldier’s letters and communiqués to loved ones back home. They were instructed to never write of the location, strength, materiel, or equipment of military units. Indiscriminate use of such information if obtained by the enemy could lead to the compromise of our military operations and consequentially, the loss of American lives — hence the saying.

Although its primary context is still steeped in the lore of the time, the saying became at least somewhat of a pop culture phrase while I was growing up, connoting the importance of keeping sensitive information to oneself.

In April 1993, the meaning of Loose Lips completely changed for me. Instead of sinking a ship, the unguarded words of one of my cousins to a newspaper reporter, raised mine instead.

After the revelation of The Lancet report, indicating that one of the three gene-carriers among the study participants was one of two 35 year-olds — i.e.: my exact age at the time of testing — for an often grueling nine months I lived with the weight of the possibility that it could be me. Unfortunately there was nothing I could do to try and find out until I could afford to purchase disability insurance for the reasons I’ve mentioned previously. I had no choice but to press on and continue to be optimistic; continue to attempt to build my business to the point that I could afford the insurance so as to be able to find out definitively if I was a carrier of the Alzheimer’s gene.

Then one day I got a phone call that changed everything. It was my cousin Samantha. Sam and I are the same age; our birthdays only two days apart (I’m the older one). Her brother is my cousin “E” who was my best friend during my early childhood, growing up in Middletown, Indiana. While I spent more time with E as a kid, Sam and I had become close as adults. Although we’ve drifted apart in recent years, back in the 80s and early 90s we talked on the phone often. But this was a phone call like no other.

We had talked a few times following the original testing about the whole situation. Sam was very supportive and I remember feeling very close to her during that time. She even sent me an Associated Press article from a local newspaper, based on the Lancet report, celebrating the success of Drs. Farlow and Wagner. It was always good to hear Sam’s voice, but one afternoon in early April, the phone rang and the familiar voice on the other end of the line was wrapped in a decidedly more exuberant tone.

“AJ — have you heard? Have you seen the article?”

“Samantha? Hi — No…what article?”

“You don’t have it! Did you her that? AJ — YOU DON’T HAVE IT!”

In the minute it took me to get her slowed down enough to speak clearly, I made out the words “Alzheimer’s” and “Cheryl,” the name of our cousin who was the other 35 year-old besides myself involved in the testing at IU. It suddenly dawned on me what she was talking about.

“What? HOW?”

Samantha went on to tell me about the front-page article from a local Indiana newspaper featuring yet another cousin, Cheryl’s sister Denise, who at age 39 was the one everyone kind of expected to get sick. The Lancet article reported that there were three family members who had tested positive for the AD gene. One of them was 44 years of age and already showing advanced signs of onset. This was obviously my brother David.

Of the other two affected subjects, one was aged 39 and the other, 35 at the time of the testing. The 35 year-old, which again could have been either Cheryl or myself, displayed no signs of onset according to the report. However the 39 year-old, had indeed exhibited some memory and cognitive difficulties in the psych-testing phase of the research.

While the identity of the 39 year-old was also in question initially due to there also being two of that age in the study group, the mystery was soon exposed. Soon after the testing in ’92 we began to hear rumors that Denise had begun experiencing some difficulties with memory loss. As a schoolteacher, those difficulties were hard to hide.

In January 1993 Denise decided to find out from Dr. Farlow if she indeed was one of the unfortunate bearers of the family curse. When she found out the sad truth, she immediately offered herself to further research with IU, serving as a test subject for early experimental drugs, which appear to have added an extra year or two to her life. Assuming that 1992 was the year of onset, Denise lived for another nine years before succumbing to Alzheimer’s in 2001 at the age of 48. But in April 1993 Denise was still very much alive — and talking.

She had agreed to grant an interview for the newspaper article, entitled “Fear of Knowing.” Its subject was a new phenomenon borne largely of the IU research, concerning the ramifications of choosing to learn the truth of one's genetic disposition in circumstances of familial diseases. The lion’s share of the article dealt with Alzheimer’s, but also featured interviews with families dealing with similar familial diseases also being studied at IU, such as Huntington’s disease, Gerstmann-Straussler-Sheinker disease, and Amyotrophic lateral sclerosis, a.k.a. ALS, a.k.a. Lou Gehrig’s disease. These others have been beneficiaries of the Alzheimer’s genetic mutation discovery yielded by the IU research, which later lead to similar discoveries of the point mutations responsible for them. Tests were then devised to be able to diagnose these hereditary diseases as well.

Denise was the lead interview for the article, her picture emblazoned on the front page. The story told of how she had struggled with the decision whether or not to find out, that the anxiety had led to sleeplessness and weight loss. Finally she decided that finding out was “the right thing to do.”

Whether or not something else she did was right or appropriate however, is highly debatable.

The reason for the excitement and urgency of Samantha’s telephone announcement was based upon a single assertion made in the article: “(She) knew that Alzheimer’s ran in her family. She had watched her mother deteriorate and finally die and knew that her sister also carried the gene.” My life turned on that razor-thin sliver of information.

“You don’t have it! Did you her that? AJ — YOU DON’T HAVE IT!” Samantha’s words now made sense. Denise’s reference to her sister could only be to Cheryl, her only sibling. The fact that Cheryl was also the only other 35 year-old involved in our family-testing group sealed the deal. I was free. I was out. I was in the clear.

I don’t remember much else about that phone conversation with Sam, except for the initial numbness followed by a feeling of utter relief and a few tears of joy. Sam, while attempting to appropriately measure her excitement out of respect for Cheryl, was nonetheless ecstatic for me.

But should she have been? I never took the time to think about it, but Denise was certainly already in the early stages of AD when she gave that article interview, which I believe has something to do with her rather startling indiscretion. It was, to be sure, an invasion of her sister’s privacy in the extreme. Did her already-diminishing capacities also diminish her judgment? Is it possible she could have just made it up? However we would soon learn that indeed Cheryl was beginning to make herself available to Dr. Farlow’s staff as Denise had done and began her series of regular three-times-a-year visits to IU Medical Center for testing and new drug therapy, which continues to this day.

Cheryl no longer communicates with most of the family and hasn’t since she learned of her condition. She dissolved her marriage (her idea from what I’ve been told) and moved to Oregon. Not that she and I were ever that close, I really wanted to talk to her, to just see what was going through her mind. But what could I possibly say? “Wow Cheryl, I’m really sorry to hear that it was you and not me?” It would obviously be an awkward situation. I still haven’t seen or spoken to her since we were kids. I think that now I might be able to say the right thing, but I’m not sure. She has, from the last I heard, finally begun to regress. However the fact that she is only now beginning to show signs of onset at the age her sister was when she died, and a three full years beyond the age her mother was when she began to show signs of deterioration, is a testimony to the positive effects of the AD drugs she has been helping to test over the past ten years.

But hearing the news of Denise outing her sister, obviously changed my entire outlook on life. All of the uncertainty melted away. I looked up and the cloud was gone. I rejoiced in the warmth of the sunshine on my shoulders. I truly had a new lease on life.

But how long would that lease last?

We now had what we believed to be the full compliment of the affected family members mentioned in the study identified: my brother David (certainly the most obvious), My cousin Denise (who had now openly admitted that she knew she had it) and her sister Cheryl (also implicated by Denise’s assertion in the newspaper article). So that meant that everyone else was in the clear, right?

We were gonna all live happily ever after…weren’t we?

Next: Just when I thought that I was out...they pull me back in!

Tuesday, December 07, 2004

It’s Still Ticking (Part I)

Why the hell didn’t anyone bother to read the fine print?
Y’know, it’s one thing to make an honest mistake and feel silly about it. However that feeling is something altogether different when it follows an egregious, boneheaded error — especially when in so doing, its consequences place your own wellbeing or that of your family in danger. That feeling is a little bit harder to take.

Now I’m probably not too far off base in assuming that most of us don’t spend a goodly amount of time with our noses buried in scientific/medical journals (with the Burner notably excepted). To say that they’re a tedious read for the layperson would be an understatement. But I’m still trying to figure out how we all could have so completely missed what I have now discovered to be a somewhat obvious caveat to the assumption that we were all ‘out of the woods.’ It’s as puzzling as it is exasperating. The only thing I find more amazing than the error I made in assessing the final published AD study results is that we all apparently made the same glaring oversight.

I am now convinced that no one in my family really read the report when the test results were first published in 1992. Perhaps we only saw what we wanted to see. And though we eventually would assume that the report cleared our immediate family from danger, there was indeed reason for concern initially — about me in particular.

Forest?…What forest?
I guess I need to clarify something. I have to this point indited my entire immediate family for misunderstanding the test results, but I really need only to personalize it, because I really can’t say for sure what anyone else’s thoughts and understandings were. I can only go by the reaction everyone had to the nightmarish realization that Alex was showing signs of AD. No one except my older brother TK thought that it was possible, and that opinion was only one of hindsight. He recently related to me that he noticed Alex’s behavior beginning to change, in his opinion, as early as 2000, the year Alex turned 40. Alex was doing some legal work for an entrepreneurial project TK was engaged in and he reportedly displayed a measure of confusion and outright lack of competence that was totally unlike him. TK said he was surprised, but that he never put two-and-two together until recently.

Whether or not Alex has actually been affected by AD for that long is debatable; his wife insists she didn’t see any signs until just over a year ago (around August of 2003). However anytime within the past four years would be consistent with the onset pattern displayed by most of the affected members in my family. The point is, no one saw it coming — not even remotely. It was the quintessential example of ‘not seeing the forest for the trees.’

In fact, back in 1992 when the report was first published, there was much more of a concern that it would be me, not Alex at whom fate would point its bony finger.

The study, published in the international medical journal, The Lancet, gave a fairly detailed and concise breakdown of the control subjects whose DNA were used in the test. It detailed the correlation between each participant’s level of Amyloid Precursor Protein (APP) found in the cerebrospinal fluid (CSF) that each of us had given via spinal tap when we all converged on Indiana University Medical Center in April 1992, under the auspices of Dr. Martin Farlow.

The study involved four generations of my family. Its range includes my Grandfather (Generation I), who was the carrier of the AD gene from yet other previous generations of his family line in Rumania, to my brother David’s three children (Generation IV), who now must also deal with the specter of possibly developing AD later in their lives. And now Alex’s three children must also be added to that dubious roster.

Born of my Mother and her two other AD-affected siblings (Generation II) were the ten members of “Generation III,” comprised of my four brothers, five cousins, and me. We Gen3’ers were the focal point the study, as we, with the exception of David, were yet unaffected and represented a wide cross-section of age, ranging from pre-to-near typical onset age (31-45 years old). We each participated in the same battery of neuropsychological tests, blood sampling and the most fun of all, spinal taps for gathering cerebrospinal fluid (CSF). As uncomfortable as they were, the spinal taps were the key to the test.

From the Science Magazine article, the above chart is the “pedigree” of AD in my family. Note that the filled-in (black) symbols indicate gene-carriers. “Generation III” (the third level of the pedigree) is the group featuring my immediate family and cousins to whom the genetic testing was directed.

There were actually two major research write-ups on Dr. Farlow’s work, spaced about a year apart. The first one, in October 1991, detailed the discovery of the genetic mutation on Chromosome 21 and was published in Science magazine in August of that year. That article made the initial observation that unusually low levels of APP appeared to be a common link among those who carried the point mutation associated with Early Onset AD.

In late 1991, a researcher in California, Dr. Stephen Wagner of Salk Institute of Biotechnology in La Jolla, CA (that’s pronounced La-HOY-AH for all you non habla espanol or non Left-Coasters) read the Science article and contacted Dr. Farlow immediately. Coincidentally, he had independently been working on a way to measure levels of APP in spinal fluid. It was this convergence of research between Drs., Farlow’s and Wagner that made the test possible, paving the way for the Lancet article in August of 1992.

There were additional newspaper articles, even an episode of PBS’s Nova that proclaimed the importance of the research’s inroads. And while all of the scientific acclaim was a nice thing to be a part of, there was no one in my family who really understood it, no matter how much we wanted to pretend we did — certainly not me, anyway, and most likely, not Alex either. All we really knew before the report was published was that Dr. Farlow had discovered the genetic mutation, which causes the family time bomb to tick. All we really wanted to know after report was published was, for whom?

Is it “C” or is it me?
You may have noticed that twice I have made reference to the notion that we all surmised that with the obvious exception of David, the rest of out immediate family was ‘out of the woods.’ However initially there was some concern that I was not.

The reason I’ve yet to explain why is because it has to do with detailing the actual findings of the Lancet report, and I didn’t want to be all over the map with my references to it. This story is hard enough to tell even without all the technical details, and I’m bound and determined to make it understandable to everyone if at all possible. So I’m trying to keep the details in a steady, logical progression.

From this point forward, however, it may be difficult to follow the game without a scorecard, but I’ll try to keep the tedium to a minimum.

Ironically, it was Alex, the family’s self-appointed secretary of State, and being an attorney, most logically, the executor of my Father’s will, who distributed copies of the Lancet report to each family member via mail in late August, 1992. He was the one who kept in contact with Dr. Farlow and advised us of new developments following our group research encounter that previous April.

When I first read the two-page article, I remember the tingling sensation in my gut. What was I looking at, really? Would I be able to divine my future from this morass of fifteen-dollar words? From the outset, the actual number of participants in the study was just sort of a foggy detail that I don’t ever remember really addressing, let alone establishing in my mind. The first time I read it, only one thing jumped out at me. It would continue to tattoo a deadening pulse of dread in the back of my neck for the next nine months.

There on the first page, the report detailed the disposition of the test subjects who had been determined to carry the genetic mutation. “One of the two symptom-free gene-carriers (M1; aged 35 years) had good intellectual abilities with no deficits in memory or cognition…

It just so happened, that’s how old I was at the time. But it was also the age of one of my cousins (who we’ll call “Cheryl”), who along with her older sister (who we’ll call “Denise”) was also a part of the study. So, in a circumstance in which I knew that I already had a 50/50 chance of acquiring the disease, I was now faced with another 50/50 proposition. Was the report indicating that it was my cousin or me who tested positive for the AD gene?

I can’t say for sure how much, but I’m sure it was the distraction of the cloud’s return to its previous overhead position of uncertainty in my life that threw me off initially. The details of how many family members were involved in the test results (a fact that doubtless played the biggest role of all in our self-deception) was something that I don’t ever remember directly reading or questioning. I just assumed that it was all ten of us. The actual number was the least of my worries. I was scared shitless. Here I was, 4-7 years away from the typical age of onset, having just moved my family halfway across country, living in a small apartment, self-employed with two young children and no health insurance. I could no more afford private disability insurance than the man in the moon; yet I needed to do something to plan for the future of my family. I was paralyzed and despondent. I wanted to go off, find a nice big rock and crawl under it.

But it is now obvious that we were my own worst enemies. I’m now certain that we in our own minds blurred the distinction between research and diagnosis. Not to say that the research was flawed in any way, but from the outset, we were repeatedly discouraged from reading too much into the test results or trying to guess ‘who was who.’ Again we were told by Dr. Farlow that if we really wanted to know, we would have to go through the established channels to learn what our individual results were.

We were reminded of IU’s legal policies, requiring the signing of a number of legal liability release forms before he could give out any definitive information. And of course, the signing of the release forms was only the tip of the iceberg, that in the grand scheme of potential knowledge, if you don’t have insurance already in place and test positive, you would be uninsurable from that point forward. It was a vicious cycle. I didn’t have the insurance and didn’t know when I would have. I was helpless to do anything but hope, pray, and twist in the wind.

But somehow we worked through it. Michelle was incredibly supportive. This was something she knew she was possibly signing up for when she married me. We clung to each other and to God for strength. I did my best to establish my business in my new home, and things began to develop well. I had steady work, Michelle found a good part-time job, and we began to seriously consider looking for a house to buy. The cloud was again barely noticeable, but it still never disappeared completely. There was always the pressure to ‘get my act together’ financially, so that I could in good faith learn once and for all whether or not I had the family’s genetic predisposition for Alzheimer’s.

But then in April I would receive a phone call that would change my plans — not to mention the weather.

Next: Loose Lips…

Friday, December 03, 2004

It’s Still Ticking (Prologue)

Re-Publish Note: I am re-posting this, the prologue of this series in order to keep it together with its subsequent parts. God knows this thing has taken long enough for me to write, hopefully this will allow those who wish to re-read it from the beginning some measure of continuity.

As I’ve mentioned ad nauseum, this has been the most difficult story I’ve ever written, not only from an emotional standpoint, but also from a details standpoint. It’s about scientific research that’s pretty dry, not to mention difficult to put into layman’s terms — it is to me anyway. Along with the tedious details are some big emotions that go hand-in-hand with this most personal part of my past, and possibly, my future. And as always, I don’t write in shorthand. It has to be as completely understandable as it is explanatory.

Therefore this story has been one colossal chore. The only thing I think I’ll ever really like about it will be the “finis” at the end.

I won’t say that I hope you enjoy it. More accurately, I hope you endure it. I’ll thank you in advance for that.

Maybe I should give out t-shirts…

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Okay I admit it.
I’ve been running. I’ve been hiding — not from you, not from myself, but from this story. I had really thought that the emotions pouring through me while on this fateful road trip with my younger brother two weeks ago would be begging to flow from my brain through my fingers as soon as I got back. And in all honesty, I got off to a good start. But then I hit a wall — one that I’ve still not cleared, but that I will attempt to slowly inch my way over as I trudge through this tale. I do this not because I want to, but because I feel I have to. This is the weirdest feeling I’ve had since I started writing; I just want to forget about everything, yet I want to write about it until my fingers fall off. It’s just that every time I’ve tried since my return, I’ve run into this wall, as if I was being diverted; led to another place. I feel as if I’m treading quicksand.

So why am I doing it? Because quite frankly, I’m afraid that if I don’t, I’ll never be able to write anything else ever again.

This is the story of my recent encounter with my most beloved little brother, who heretofore I have simply referred to as Lbro. I’ve never really liked that moniker, but have continued to use it because I’ve just never taken the time to come up with an appropriate alias. However I’ve decided that it’s much to flip; much too trivial a nickname for someone who was, is, and always will be so very special to me, especially at such a poignant time in his life as this is now. So after some thought I’ve decided that from this point forward, his name is Alex. We used to jokingly call him that years ago (mostly behind his back), due to the fact that his persona was so reminiscent of the character that Michael J. Fox made famous in the 80s sitcom, Family Ties. Fox’s character, Alex P. Keaton was a perfect reflection of the way my brother carried himself. He was smart, frenetic, funny, and just a bit condescending — in a somehow endearing kind of way, of course. That was the time in my life I will most fondly associate with the closeness I had with my brother, so “Alex” he is.

The cloud - Part One
Most of you reading this already have the Cliff Notes for this story. I have written at length about my family’s battle with Early-Onset Alzheimer’s disease (AD), which has visited three generations to which I’m closely connected, and countless others amongst the branches of my Mother’s family tree. For half of my life I wore the cloud of my potential mortality, hovering above my head. It would follow me around for 25 years. It was not always palpable, but it never went away. It was constantly with all of us from the day when my Dad explained to us the reality of the inherited disease that had befallen our Mother.

The cloud never blocked out the sun completely, but rather wispily shrouded my psyche from time to time; never enough to devastate, but just enough to provide that irritation in the back of my mind; that nagging headache of a thought, to rob me of my peace. Would it be me or one of my brothers to follow in the path of the family curse? In the late 1980s our fears would be realized as my second-eldest brother David began showing signs at the age of 38.

The cloud grew darker and more ominous.

But then in an almost unbelievable stroke of irony, David was asked to become involved in Alzheimer’s research being conducted at Indiana University Medical Center in Indianapolis, with which my entire family would later also become involved. By virtue of the study of my brother’s DNA, the researchers isolated the previously unknown genetic mutation, which triggers the form of familial AD that runs in my family. Finally a test was now available to determine whom, if any of the other family members carried the gene that would almost certainly foretell their later developing Alzheimer’s disease.

We all participated in the research study that would later garner international acclaim and proved to be a springboard for further research and diagnosis of other varieties of AD and other diseases, such as Huntington’s and certain types of Parkinson’s disease, which have a similar genetic profile. Our family was featured in medical journals and PBS science programs. We felt great about the future, and even better about being a part of something so potentially big; so potentially helpful to so many people.

Yet the reality for the here and now was still horribly uncertain. The research data was of course, blind. No names are ever attached to the results of such efforts, due to the legal liabilities involved. The University would be necessarily guarded about someone who might claim that the researchers, in diagnosing their fatal disease, have caused them irreparable emotional damage, resulting in crippling lawsuits against the institution.

So while we obviously wanted to know, we knew that when the results of the research were published that none of the individual findings would be plainly discernable.

Or would they?

When the study was published, much to our surprise the discussion of individual participants was surprisingly revealing as to their discernable identity. Sure it was written in scientific-ese, making it tantamount to translating the Dead Sea Scrolls to understand. But after a bit of a scare with regard to myself (more on that later), in our layman’s-eye-view, we all agreed that among our immediate family, the outlook was good.

Nevertheless, the only definitive way to find out whether or not any of us carried the AD gene, would be to first agree to sign a stack of release forms absolving IU of all legal responsibility for divulging such information to us. But there was more to it than simply signing a bunch of papers. There were long-term implications such as insurability, and future employability to be considered. Once a positive Early-Onset AD diagnosis is rendered, the one diagnosed becomes positively uninsurable and most likely unhireable to most employers in Corporate America from that point forward for the rest of their life. Those are just the cold, hard facts.

Therefore there were a few preparations to be made beforehand, such as the obtaining of costly long-term disability insurance. For me at that time, a freelance graphic designer having just moved my family to Nashville with limited financial resources, private disability insurance wasn’t even a remote option. I had to get myself established and take care of my family’s immediate needs. As much as I wanted to know, there was just no way I could afford it.

Although Alex wasn’t quite as hindered by the financial restraints, the process of learning whether or not he carried our grandfather’s AD gene was to be taken no less lightly. He was a successful young attorney at one of the nation’s most powerful and respected law firms, and I’m sure he knew his career would certainly be over if it ever came to light that he was carrying the AD gene. I cannot say what his mindset was at that time, but in discussing things with all of my brothers over the years, I know that we were all reticent to go get the “official word” on our genetic disposition. I think we believed that because of our assumed understanding of the study results, that we could take a pass. Who needs going to the trouble of getting the “final verdict” when the study has told us that we’re off the hook?

And the cloud? It just seemed to disappear. I rejoiced in the warmth of the sunshine on my shoulders. While we were indeed sad to have lost David, the rest of us all thought we were given a new lease on life.

Little did we know that Alex’s lease would eventually be revoked.

My little brother’s cloud has turned black. He is now showing signs of Alzheimer’s disease at only 44 years of age. He is most likely in his second year of onset. If the average duration for my family holds, he has about five more years to live, but only about two or three with any viable lucidity. However there now are drug treatments available that may successfully slow down the process of the disease and hopefully, will help to extend those lucid years a little longer.

This has come as such a shock that everyone was in denial, attributing Alex’s rapid succession of failed jobs (three law firms in two years) to everything from sleep apnea to clinical depression. No one thought it could possibly be AD.

But it is.

How could we have been so wrong? Who goofed? Were we misled?

Nobody lied to us — I’m convinced of that — we just didn’t ask the right questions, because we had misconstrued the results of the research to have already given us the answers. I had read over — but not actually read the study probably a half dozen times before tonight. But only now have I finally discovered where we erred in our understanding of it.

It takes a licking...
Chances are unless you’re around my age you’re more familiar with Patrick Swayze than John Cameron Swayze. However I’d be willing to bet that the latter Swayze’s contribution to pop culture is better known.

John was a popular 1930s-era radio news reporter who went on to gain even more notoriety as one of the true pioneers in the fledgling medium of television. During WWII his voice gained fame over the airwaves for NBC Radio. Then in 1949 Swayze became one of the first TV News anchormen for NBC, giving way to Huntley and Brinkley in 1956.

His notoriety naturally led to his demand in the 1950s and 60s as a commercial pitchman. Although he did commercials for many different products over the years, he will certainly be best remembered for one in particular; even more for the product’s slogan which he immortalized.

For over 20 years Swayze appeared in commercials for Timex wristwatches, and became one of the most recognized personalities on television. The famous slogan he delivered at the end of each commercial, “It takes a licking and keeps on ticking, ” has become firmly entrenched in American pop culture. Today we casually, even comedically apply the now common phrase to anything that is well-made or irrepressible.

Apparently Timex watches aren’t the only things that offer such resilience. The family time bomb doesn’t seem to want to quit either.

It’s still ticking.

Next: Why the hell didn’t anyone bother to read the fine print?