My Latest Interview

http://www.dispatch.com/live/content/life/stories/2010/03/23/family-struggles-with-gene-that-causes-alzheimers.html?sid=101

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.

healthyliving@dallasnews.com

The Thousand Mile Stare: A Conversation with Gary Reiswig

My friend Chuck Jackson was diagnosed with young onset Alzheimer’s disease at age 50. It wasn’t a total surprise to him – his brother was being treated for Alzheimer’s and many of his cousins had it. His mother and at least nine of her siblings had it. Most had symptoms early in midlife; some died while still in their 50s. Chuck and many of his relatives have a rare genetic variation called presenilin 2, or PS2, that almost guarantees a person will develop Alzheimer’s.

It’s only recently that the stigma attached to dementia has lessened. For a long time, Chuck’s relatives didn’t talk much about their family history. But since his diagnosis in 2004, Chuck has talked with support groups, participated in research and testified before Congress.

His cousin Gary Reiswig, who now knows he does not carry the PS2 gene variation, has gone even more public about the disease that has ravaged his family. His new book,The Thousand Mile Stare: One Family's Journey through the Science and Struggle of Alzheimer's, is a very personal journey through generations of disease and tragedy.

The book opens in 1936, when Gary and Chuck’s grandfather, perhaps in the early stages of Alzheimer’s, drove his truck into the path of an oncoming train in rural Oklahoma. He and one of his sons were injured, and his wife was killed. From that story, so emblematic of the family’s problems, the book spans two continents and more than two hundred years. The family’s roots as “Volga Germans” who left Germany to farm land along the Volga River in Russia in the 1700s are interesting, but it’s the little details of daily life with Alzheimer’s that make this book so riveting.

Shattered and Scattered by Disease

Reading the book, I was struck at how hard life would have been for the Reiswigs even without Alzheimer’s. Life on the farm wasn’t easy, and they had to deal with wars, the Great Depression and the Dust Bowl. Did enduring these hardships, especially the Dust Bowl, shape how the family has dealt with Alzheimer’s?

Gary Reiswig

“I think the Dust Bowl was the least of it,” Gary says. “Going back to when my family left Germany and went to Russia, they spent 110 years living in a small German enclave surrounded by people they were suspicious of and who were suspicious of them. So they had this cultural legacy – a sense of isolation. Then when they came to the U.S., they were exposed to a broader community and tried to adjust to their new situation. They even gave up their religion and became Seventh-day Adventists. They adopted this new religion full force and were prominent in the church for a generation or two. In my dad’s generation, with World War I and World War II, they stopped speaking German at home. They really tried to fit in.”

“But in that same generation, people lived long enough for the disease to rear its ugly head,” he says. “The symptoms became apparent in Dad and three of his siblings almost simultaneously. The neighbors began to realize that the Reiswigs were ‘a little crazy.’ To develop this kind of reputation in a community where they were trying to fit in was devastating, and really led to the way my family has scattered. When I was a kid, most of my family lived within a few miles of each other. But now I have only one relative there, and she is basically comatose in a nursing home. So the Dust Bowl, depression and wars were bad, but the events after the late 1930s, when my granddad drove his truck through the railroad crossing and my grandmother was killed, were much more ominous.”

Finding Meaning

Along with many family members, Gary gave blood samples for research in the 1980s. But it was only when he saw a diagram of the family tree published in a scientific journal in 1995 that he understood he did not have the PS2 gene. His father, brother and sister and many of his cousins have now died of Alzheimer’s, and he describes himself as “the last man standing.” He says it took some time to find meaning amidst all this sickness and death.

“After my father died and the reality hit me that I was possibly next in line, I became imbued with some sense that life had speeded up,” he says. “I felt I needed to try to do EVERYTHING in anticipation that my life could be cut short. In retrospect, I think that was probably an overreaction. A more appropriate reaction might have been to try to stay in the moment, to concentrate and to not try to do so many things. I regret that I let myself be spurred into trying to do so many things, not gaining the expertise I really wanted in areas like writing. In essence, the disease has finally given me a direction and purpose for the rest of my life: writing about the disease, and helping my family and others who are facing the same quandary I was facing.”

A Long Haul to the Cure

Along with each generation’s stories, Gary writes about Alzheimer’s research, from Alois Alzheimer’s description of the plaques and tangles in the brain of a young onset dementia patient in the early 1900s to the immunotherapy and imaging studies Chuck is participating in. Sorting through the research has made Gary more realistic about progress towards a cure.

“Every day you see some article about Alzheimer’s research, and it sounds so good,” he says. “But it’s one little piece, one little aspect. What I learned talking with researchers is that we’re still looking at a long haul.”

If you’re interested in Alzheimer’s research, or simply want to know more about this extraordinary family, I recommend The Thousand Mile Stare.