By Brian Goslow
Gary Reiswig first noticed “the thousand mile stare” at age six when his grandfather, then 80, moved in with his family. “He was silent and didn’t seem to know we, his grandchildren, existed,” said Reiswig, who grew up on a farm in Oklahoma and now lives in East Hampton, N.Y. “It was the first time I observed that distant distracted look.”
As the years passed, he would see it again in other family members, including a horribly forgetful aunt, who put ice trays into the stove instead of the freezer and his father and an uncle, both of whose once remarkable farming and machine maintenance skills slowly diminished in front of Reiswig’s eyes.
It was his aunt, Ester May Reiswig, alarmed after four family members died from the same symptoms over a short period of time, who realized the deaths were more then coincidence. “She took this thing on and said, ‘We have to find out what it is,’ ” Reiswig said.
“It” turned out to be a rare early onset Alzheimer’s disease (EOAD) gene, the origin of which would be traced to Reiswig family members going back to the mid-1700s.
“While not good news, it certainly clarified and removed some of the mystery of what had happened to us with all the people in the family falling ill,” said Gary Reiswig.
The family is still hoping for an elusive cure. “The knowledge that’s been accumulated has been pretty vast,” Reiswig said. “However, what we know about treating it is still fairly limited.” He details his family’s history with Alzheimer’s — beginning with the death of his grandmother when his normally vigilant grandfather, drove his truck in front of an oncoming train — and their efforts to help find a cause, in his recently published book, The Thousand Mile Stare: One Family’s Journey through the Struggle and Science of Alzheimer’s (Nicholas Brealey Publishing).
When Reiswig, now 70, was growing up, symptoms that are now known to be Alzheimer’s or dementia, were simply attributed to old age; a person’s forgetfulness was deemed just part of the aging process. He recalls that when his father was diagnosed in 1963, it was just called senility. “Even till the 1980s, (Alzheimer’s) was only thought of as something that affects people after the age of 60.”
That changed when pathologists found the disease’s effect was the same regardless of age; age is no longer taken into account when making the diagnosis.
“Even though our family has a gene that causes early onset — before 60 or 65 — what we’ve learned is whether Alzheimer’s affects you at 40 or 50 or 85 or 90, it’s still the same disease,” he said. “The pathological condition in the brain is the same.”
Determined to find the source of her family’s ongoing troubles, Ester May compiled a family tree, looking for clues as to what had stricken them. The floodgates opened after another aunt mentioned a direct link to the “Volga Germans” who had resettled in Russia in 1766, before immigrating to the United States 110 years later. She also learned that a family member had researched and wrote a book called The Volga Pilgrims.
Her (Ester May’s) early research was included in a 1979 Department of Neurology at the University of Colorado study. The research would be continued with assistance from the University of Washington Alzheimer’s Disease Research Center, which had revisited earlier Alzheimer’s studies and interviewed people found with early onset Alzheimer’s and determined half were Volga Germans — with a common ancestor. The work revealed the possibility that Frau Auguste D., the patient Dr. Alois Alzheimer was treating in 1901 when he discovered the disease, was also a distant relative.
“They attempted to find out the identity of the founder of the gene and follow it from Volga, Germany to Russia and then onto North America,” Reiswig said. “They couldn’t do that but it was obvious that at least one of them had carried the gene from Germany.”
The hope of a confirmed connection to what was affecting the Reiswig family was initially raised when an early onset gene on chromosome 21 was discovered in 1991 — but it turned out that it wasn’t the one affecting the family. Theirs, the PS2 gene, it would soon be determined, was the rarest Alzheimer’s gene, with only 200 people known to have been afflicted by it.
Ester May devoted much of the second half of her life to helping find a cure for Alzheimer’s before she went into a nursing home due to dementia in 2000. She died in 2007, the same year a New York Times article, The Rarest Gene, attracted Reiswig’s attention. He was surprised to see his cousin Chuck appear in the accompanying video holding up a photograph of the 14 brothers and sisters of their parents’ generation, stating, “We’re not going quietly to our grave with this disease. We’re going to talk about it.” (Reiswig intentionally avoided using Chuck’s last name in his book, to provide his extended family with some privacy).
The segment fueled Reiswig’s desire to preserve and continue Ester May’s work. “The best way I could do that was to write a book that included our story and the story of others to help increase awareness not only by the government and congressional legislators, but by the general public that this is a major health problem facing this country and the entire world,” Reiswig said. “This will hopefully cause them to focus as much resources as possible on science work and money to find a cure.”
Reiswig’s book notes that the National Institutes of Health is supporting 21 studies with others being financed privately. Pharmaceutical companies have spent billions of dollars searching for treatments and cures; however, Alzheimer’s disease-directed drugs currently on the market have shown mixed results.
Reiswig is encouraged by two recent developments.
A University of Pennsylvania School of Medicine study provided additional evidence that a biomarker test can reliably determine an Alzheimer’s disease diagnosis through, he said, the use of a radioactive compound that can penetrate the brain’s blood area and show a clinical manifestation of Alzheimer’s in the brain. The second is an Archives of Neurology report that a spinal tap test can determine and identify Alzheimer’s through the testing of spinal fluid.
As his book was going to press, Reiswig learned that Ester May’s youngest son had been diagnosed with early onset Alzheimer’s disease.
Reiswig himself rests a little more comfortably because he knows he doesn’t have the PS2 early onset gene, the knowledge of which, considering his family history, has him feeling as if he’s living in “bonus time.” He first donated blood for scientific study in the 1980s but didn’t learn for another decade that he had escaped having the gene until he saw the Reiswig family tree detailed in a 1995 scientific journal. For that, he sometimes calls himself, “The last man standing.”