“For people who are so used to hope that medical science can push the darkness away here, they could be disappointed.”

And there are good reasons not to get tested.

Marty has decided not to find out his gene status. He is afraid that knowing he has the gene might jeopardize his long-term care insurance.

“My wife and I have chosen to live as if I have it anyway,” said Marty, who has a 5-year-old girl and 3-year-old boy.

The decision over whether to have children who could suffer the same genetic risk is especially touchy. Marty said his grandmother Ester, who was instrumental in helping bring the family’s genetic disease to light, urged members of the family not to have children.

“Personally, I’m glad that no one followed that rule,” he said. “I’ve been given a life by my parents and the good Lord. I love my wife. We both knew the genetic risk, but it is a very natural thing - we wanted to have kids and love them and raise them, no matter what their future.”

Every five years, they plan a big vacation. The last one was to Italy.

“I don’t know how long I have. It drives me to seize the day because I could get Alzheimer’s symptoms as early as my mid-40s, and here I am at 32.”

Gary says it is common among the younger members of his family not to get tested. “They say, ‘maybe when I’m 50,’ but I don’t want to know now.”

Gary had no idea of the weight of his burden of living with the threat of Alzheimer’s until the day he found out he did not inherit the gene.

“It was joyous relief. I just wanted to sing. And then, there was just this horrible weight of grief and sadness because of not only my brother and sister, but all of the other members of my family I have seen who have lived through this.”

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By Julie Steenhuysen