Predicting Alzheimer's

"Sometimes I think, 'This is a terrible storm on the horizon that could absolutely devastate us, and I want to know if it is real or not'. Other times I say, 'Gosh, if I do find out that it is real and I know I will die that way and I know probably the age I will die -- that is an almost unbearable amount of information about my future."
"People say you could go sky diving or ride a bull. But you can only do things like that as long as time and income provide. You still have to get up in the morning and go to work and pay your bills."
Marty Reiswig, 37, Denver, Colorado

"It depends on the day [whether he feels regret for having a genetic blood test]. I have battled weight issues and the suicide issue, and I have had problems with my marriage ever since I found out [gene-tested positive for early-onset Alzheimer's]. Some days I really regret it. It is a  huge burden. Other days I am glad I know."
Participant in test-group of patients, Washington University School of Medicine, St.Louis Missouri

"I was already living every single day, ever single moment assuming I had it. I did not want to find out I have it. I wanted to find out I don't have it [genetic predisposition to early-onset Alzheimer's]."
"To me, it is just so obvious. Worrying about what the truth is is far more damaging, and it doesn't change the conclusions."
"Knowing the truth] frees you from making the wrong assumptions."
Matt Reiswig, 41, Denver, Colorado

­Marty Reiswig, left, and his brother Matt are part of a family in which a member has a 50-50 chance of inheriting a mutated gene that will lead to Alzheimer’s around age 50. Marty, 37, chose not to take a blood test that would reveal if he has the gene. Matt, 41, took the test and does not have it. Credit Nick Cote for The New York Times

The two brothers sharing the agony they each experienced watching their father succumb to early-onset Alzheimer's -- and before that, their grandfather -- reach its final devastating stages, knew they too could be staring the same kind of future in the face; and become men whose memories were obliterated completely, their mind deranged, their bodies eventually shutting down functions. Early-onset Alzheimer's was a familial trait, one shared by their extended family.

One of their cousins wrote an unusual family-history book, one he titled "The Thousand Mile Stare".

Another of their cousins, whose father also had the misfortune of that deadly gene, at age 43 worried he hadn't long before he too would succumb. And at age 40 Brian Whitney, living in Washington state, made the decision that propelled him to have the genetic testing done. He was concerned about leaving his young family, and in particular his two-year-old daughter who, he imagined, at the age of ten would have to bear witness to her father becoming increasingly remote and then dying.

That he might conceivably pass that gene to his daughter tormented him, and convinced him to have the test. If he did, he lectured himself, it would be his humanitarian duty to volunteer for research studies into Alzheimer's. His argument with himself centered on aiding scientific understanding that might eventually result in treatment that could conceivably benefit his daughter. And so now, because he tested positive, he has become a research subject in a clinical trial.

Monthly a nurse arrives at  his home so he can be injected with an experimental drug. His cousins, Matt and Marty also struggled with whether or not they should undergo genetic testing, to finally know of a certainty whether or not they had inherited that faulty gene triggering Alzheimer's. In the end, Marty Reiswig with two young children of his own, joined a study group where researchers follow family members where the gene is prominent.

Not all of the group's members have been tested, though all were at risk of having the mutated gene. After due consideration, however, Marty Reiswig decided he would not undergo the test. "For me, the return is not worth the investment", he stated. On the other hand, his brother Matt, living nearby with his wife and five children feared he might already be in the early stages, at age 41. If he lost his keys, if he couldn't remember a name, he was certain he had beginning Alzheimer's.

So he had the test. And the result was that he was free of the malign gene. He wept with gratitude.