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Granny’s giggle gone too soon
Betty Jean Ruth was what you'd affectionately call "a character." Born and raised in a family of seven children in Tennessee, she married young and settled down with her Army soldier husband in New Philadelphia, Ohio. The couple raised six children in the idyllic small town, where Betty was active in booster and card-playing clubs. Those six children went on to bless Betty and her husband Floyd with six grandchildren.
Betty Ruth sounds like your average Midwestern housewife and grandmother, but there was much more to her than that. She was born on Christmas Eve, and darn it, she and her family celebrated both each year. She was present for the Cleveland Indians' World Series win in 1948—the last time the team saw a championship. She loved her Cleveland Browns and wore number 19 with passion and pride. She loved television and would stay up all night to watch her favorite programs. She made really yummy grits. Equally legendary to her friends and neighbors—who knew and loved her as "Betty Boop"—was her infectious laugh, which was part giggle and part cackle, with just a hint of the Pillsbury Dough Boy.
Betty Ruth was my husband's Granny. She passed away four years ago this month, her giggle and fun-loving spirit silenced by complications from diabetes and Alzheimer's disease. For Granny, her journey with Alzheimer's was a short one. We're not exactly sure when the disease first took hold of her, but it wasn't long after her diagnosis that we watched with alarm over Thanksgiving dinner as her mind rewound and restarted our conversation about every five minutes. In too short a period after that, she was gone, two months shy of her 76th birthday.
We've always wondered how Granny's life would have been different if her Alzheimer's had been caught earlier, or if she had more time to take advantage of some of the treatments available to patients with the debilitating disease.
I'm sure the lives of her children, who faced numerous challenges as they saw to her care and comfort, would have been different, too. For too many patients with Alzheimer's, treatment is too little, too late. And for too many families and caretakers, the burden they must take on worsens with each passing day.
With these thoughts on my mind as the anniversary of Granny's passing drew near, I had the pleasure of interviewing two gentlemen who are pursuing a sea change for Alzheimer's treatment. I first learned about the Banner Alzheimer's Institute (BAI) in Phoenix and its researchers, Eric Reiman and Pierre Tariot, from a recent Washington Post story, "Researchers hope to quell a surge of Alzheimer's cases with new diagnostic tools."
"We want to help launch the era of Alzheimer's prevention research," Reiman told the newspaper. "It's a true collaboration between stakeholders, the people afflicted, the families and people at risk."
Intrigued, I sought out Reiman and Tariot for my own story, which you can read on page 17 of this issue. I learned that in 2012, BAI will launch two studies that will treat patients who are at high risk of developing Alzheimer's, but who have yet to show symptoms. BAI—which prides itself on providing leading-edge care for both Alzheimer's patients and their caregivers—will use brain imaging and cognitive testing to track the impact of several experimental drugs in development.
"Right now, we have a number of promising treatments being studied in symptomatic patients, but the concern is that by the time most people begin to show symptoms of the disease, it has already ravaged the brain," Reiman says, his voice low and calm, but fervent. "Wouldn 't it be a terrible shame if the makers of the most promising treatments found that they were both safe and well-tolerated, but they threw the baby out with the bath water simply because they couldn't get to people sooner?
"Suppose someone came along with a promising way to prevent Alzheimer's disease," he continues. "By the time it was developed, it would take too many healthy people, too much money and too many years longer than the life of a drug company's patent to evaluate the risk or obtain regulatory approval."
That's not soon enough, Reiman says. BAI's stated mission is "to end Alzheimer's disease before another generation is lost."
"Now is the time to launch Alzheimer's prevention research, to provide both the means and a way to test and get approval for presymptomatic Alzheimer's disease treatments," he says. "We think we have the means to evaluate them as quickly as possible. The idea of advancing this field and helping to change this disease's impact on patients and their families— what could be more gratifying than that?"
We may have already lost Granny, but thanks to the efforts of Reiman, Tariot and their colleagues, for the next generation of my husband's family—and the millions of families who have been touched by Alzheimer's disease—there is hope.