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!
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