Monday, July 12, 2004

Tribute to a Greek God (Part V)

The Legacy
We all left Telluride with mixed feelings. Five days of brotherly camaraderie and soaring spirits were tempered by the heartbreaking realization that David was succumbing to the family curse of early-onset Alzheimer’s Disease. Knowing the fact that such a time would never come again (...or would it?) for our family made it all the more special.

But life had to go on, for all of us.

As for my family, after having visited the Grand Canyon on the way to Telluride, we continued our vacation for another five days, completing our camping tour with visits to three more desert Southwest U.S. National Parks: Bryce Canyon, Arches, and Zion on our way back to SoCal.

As for David, the care he had been receiving from the staff of Indiana University Medical Center’s growing Alzheimer’s research team intensified. He became somewhat of a celebrity test subject at IU. And he understood what was happening to him. I can’t imagine how that must have felt, but if my Big Brother never had any other qualification for the office, the way he handled the fate that he’d been dealt truly confirmed his status as a hero. He knew that his participation in this research could lead to important strides being made in understanding this mysterious disease. He was aware that it could be a most important part of his legacy.

You see, the greatest problem medical science faced in dealing with Alzheimer’s was in determining what caused it. They had no way of knowing whether or not someone would develop the disease until after the fact. And once the damage begins, there is no way to reverse it. As simply as I can describe it, one of the leading medical hypotheses for the way familial Early-Onset Alzheimer’s Disease attacks its victims is by effectively “smothering” memory-related brain cells with a protein (Beta-amyloid) “plaque” substance, which coats the outside of the cells and causes them to die. This had previously been the only truly positive diagnosis for the disease, and even that could only be confirmed via postmortem autopsy.

However, there was no way to know who would develop it beyond the probability associated with the fact that one of their parents had the disease. So David’s involvement provided an important link in IU’s Alzheimer’s research. It would ultimately become the primary link in the discovery of a test of the genetic mutation believed to be coincide with its presentation.

Dr. Martin Farlow, vice-chairman for the IU School of Medicine Department of Neurology, was the lead researcher for the study involving David which sought to discover a way to test for the disease. That involved locating the genetic markers that could identify that potential victim as a carrier, and thereby predict whether or not they would likely develop Early-Onset Alzheimer’s later in life. As has been the case in the research of other diseases, if they can find out where it starts, they have a greater probability in finding out how to stop it.

Fast-forward to SoCal, April 1991
Although I certainly thought that Telluride would be our swan song as a family united, a year and a half after our family reunion, yet another mini-reunion was arranged — at the suggestion the IU doctors. The progress they had been making was such that they were ready to attempt to test a new procedure in which they believed they could finally identify the genetic marker responsible for the development of this disease that has plagued our family for generations.

However, in order to expedite the tests, they needed blood samples from all of the children of the affected family members in my Mother’s line. They wouldn’t have any difficulty collecting samples from nearby family in Indiana, as they were all fairly local to IU. But the California contingent posed a problem of both time and geography. Due to our jobs and other commitments, we in California couldn’t take the time to travel, so it was decided that David and Jack and their families would make the trip to SoCal. Dr. Farlow would fly out to meet us en masse and collect the blood samples, then whisk them back to IU Medical to run the tests.

Although David was steadily declining, he was still well enough to make the trip with Cindy and their son, along with Jack and his family in April, 1991. Although we weren’t as free to have fun as we were in Telluride (particularly me, since I wasn’t able to take any time off work during the few days they were there), it was great to see everyone again. We had gatherings at my house, as well as that of Lbro and TK.

We all took in a baseball game at Dodger Stadium, and most everyone (except for me) enjoyed a trip to the San Diego Zoo. Cindy and Michelle even went up to Hollywood and attended a taping of the TV Game Show, The Price is Right.

David was still conversational, but it was easy to tell that that he was doing his very best to fake it. He was trying so very hard. On the way home from the Dodger game, I was driving and David was beside me, riding shotgun in the front seat. It was late and we’d all had a busy day together. I glanced over my shoulder to see Cindy in the back seat, her eyes closed, leaning against the headrest. Then I looked over to see David curled up staring out the window with a faraway look in his eyes; quietly but rapidly breathing through his nose. I flashed back to the first time I heard that sound, back in Telluride. Now, hearing it again brought tears to my eyes, but I fought to hold them back.

The next day Dr. Farlow met with us to gather the blood samples. It was a brief meeting; he didn’t have time to socialize. He got what he came for and then was off to Indianapolis that same afternoon.

Dr. Farlow got his samples, but we got a lot more memories.

Next: Discovery
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