Author of 'Thousand-Mile Stare' recounts tragedy of his family's early-onset Alzheimer's

Gary Reiswig was 25 when he discovered that his father had an inherited form of early-onset Alzheimer's disease.

The illness had destroyed most of his family's previous generation. And the Oklahoma native had a 50-50 chance of inheriting the mutated gene.

It would be more than 30 years before he would learn that he had won that genetic coin toss.

Reiswig, now 70, chronicles his family's quest for answers in The Thousand Mile Stare: One Family's Journey Through the Struggle and Science of Alzheimer's (Nicholas Brealey Publishing, $22). The family's research participation, led by a determined Aunt Ester May, resulted in the discovery of a key genetic marker for Alzheimer's, believed to be traced to Reiswig's Volga German ancestors.

Over the years, his father and nine of his 14 siblings were afflicted with the disease. They often displayed symptoms in their 40s. Before he learned his own fate, Reiswig had even plotted his suicide to spare his family.

Reiswig, who will appear today at Legacy Books in Plano, spoke by phone from his home in Eastern Long Island, N.Y.

How did you hear or see Alzheimer's affect your family?

There was an observed family rumor that my great-grand- father Christian was senile by age 43. He died in 1903. I knew my grandfather well. I would hold his hand on walks so he wouldn't get lost. He got to where he couldn't speak and was silent with "the thousand-mile stare." My dad's oldest sister, Pearl, would put the ice tray in the stove instead of the fridge. She grew angry and violent and had to go into a care facility. Another of my dad's younger sisters got so disoriented and forgetful she could not take care of her son, who had to live with relatives. ... One of the largest impacts of this disease is that, when we finally understood what was happening, it blew our family apart.

What have you learned about the thousand-mile stare?

One of my cousins describes it as periods of white static – when his brain stops functioning. He doesn't know how long these moments last, but he will sometimes check to see if he was acting funny, and his wife will give him feedback. That is my theory with my grandfather. I believe he had one of those moments of white static that caused the original wreck with a train that killed my grandmother in 1936.

What can we learn about the disease, which is largely not driven by genes, from the inherited early-onset families?

Since the symptoms and the pathology and progression are so similar to later-onset, scientists feel younger people who are affected make better research subjects – they are an isolated population without so many other variables. It is truly a dynamic field. ... The next research of the Alzheimer's brain has to do with whether the proteins are the cause of the disease or the result of the disease. ... If they are the cause of the disease and you can stop the development, that would be a way to approach treatment.

What was the moment like when you found out you essentially won the genetic coin toss?

I had sent my blood into the Alzheimer's Disease Research Center inSeattle. ... There was an article about our family, including a chart of my generation. My brother, sister and I were included because we had been vocal about wanting to participate. I could see from that chart inScience magazine that I did not have the gene. There was my white box in the middle, between the black boxes of my older sister and younger brother. ... For my kids, it meant they didn't have to worry, they were free to find their own problems.

Helen Bond is a freelance writer in Dallas.

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