Friday, December 31, 2004

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
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