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Debunking the Myths of Alzheimer’s

By Nick DeSantis
Syracuse New Times

For Susan Dublin and Patricia Kimmerly the terrible experience of being diagnosed with Alzheimer’s disease served not as a moment for surrender, but as their call to action. Since their individual life-altering moments, they have been setting the record straight for all who would listen regarding their experiences living with the neurological condition. They co-authored A Look Inside Alzheimer’s: I Know Who I Am Today, But What About Tomorrow? (Demos Health, New York City; 138 pages; $16.95/softcover). However, they have found that the public’s preconceived notions of those afflicted with Alzheimer’s disease have proven to be a difficult perception to battle.

“When the publisher first bought the book, they gave us a cover of a very old woman standing in a field full of dandelions, holding a dandelion, peering into the distance,” said Gary Dublin, Susan’s husband. “I said, ‘No, this is not what we’re looking for. This is exactly what we don’t want.’”

Everyone involved with contributing testimonials to the book, including Gary, Kimmerly’s stepdaughter Tiffany Riihinen, and co-author Marjorie Allen, felt that the publisher’s proposed cover image reinforced the stereotype of the lonely, disoriented Alzheimer’s patient, a pessimistic portrayal that didn’t accurately address their reality. “Even the publisher was trying to pigeonhole that whole concept,” said Gary Dublin.

The book’s final cover, depicting a young girl warmly planting a kiss on the cheek of an elated older woman, much more effectively communicates the book’s recurring messages of hope and optimism in the face of adversity, as well as the importance of family and friends and the help they provide while combating the enduring frustrations and challenges of Alzheimer’s.

Both Susan Dublin and Patricia J. Kimmerly hope to meet those interested in discovering their perspectives on the disease when they sit down for a special book signing at Barnes & Noble, 3454 Erie Blvd. E., DeWitt, on Sunday, Nov. 4, 1 p.m. Call 449-2948 for more information.

Alzheimer’s disease is a progressive form of dementia that gradually worsens over time, affecting the cognitive, behavioral and physical abilities of its patients. The toll taken on those afflicted can suddenly transform even the simplest routine tasks into complicated and challenging endeavors. Although all patients experience the disease differently, they often share the same feeling of helplessness as their memory and facilities slowly slip away and an independent lifestyle becomes harder to maintain. According to the Alzheimer’s Association, the disease is the sixth leading cause of death in the United States.

Dublin, who had worked as a pediatric nurse, was diagnosed with Alzheimer’s at 52 years old, an age far below the national average of 80. Her seemingly normal functionality at the time, and especially her young age, seemed to camouflage the early onset of the disease to the point that her own doctors were hesitant to confirm the hard truth evident in their own test results.

“They had to rule everything out first before they would finally say that it was Alzheimer’s,” said Gary. “She had spinal taps and tests for months and months and months before they diagnosed her. One doctor wouldn’t even diagnose it. He said, ‘If I were you, I’d go for a second opinion.’”

Kimmerly was 66 when she was diagnosed with Alzheimer’s, although she began noticing lapses in her memory many years earlier, especially when she started to have trouble maintaining her long-standing routine of jotting down notes in her Day Minders. Her experiences working as director of Education and Training at Cortland Memorial Hospital and director of a residential facility for people with traumatic brain injury and cognitive disabilities at National Rehabilitation Hospital in Washington, D.C., allowed her to recognize some of the traits of the Alzheimer’s in herself.

“When I show certain behaviors that I didn’t have before, I’d think back to a patient that I had many years ago,” she said. “You can imagine how bizarre that feels.”

The two women met through a local support group for those living with Alzheimer’s disease that’s held once a month with the Central New York chapter of the Alzheimer’s Association. They quickly formed a friendship, finding a deep connection in their common backgrounds in the medical field and through the anecdotes they shared with one another stemming from their daily navigation of the disease.

The impetus for writing A Look Inside Alzheimer’s came about after the surprising realization that there were many books covering the topic by caregivers, physicians and associations, but seemingly none available that featured a first-person perspective. Looking to address this missing piece of the story, Dublin and Kimmerly collaborated with Allen, who is Dublin’s aunt and an author of children’s books who had experience with the disease. Allen cared for her husband, who lived with Alzheimer’s until his death in 2009. They sought to document their stories in order to provide an introspective portrait of life with a disease that has yet to be demystified to the public at large.

The book came together over the course of two years, with the two women documenting their stories by hand on yellow-lined pads while sitting together at Dublin’s living room table. As their disease progressed and writing became more difficult, they started to tell their stories into a tape recorder, with Allen receiving the recordings by mail for transcription purposes.

Toward the end of the writing process, Dublin and Kimmerly would tell their stories to Allen over a Skype connection. The process proved therapeutic and enjoyable for all involved. “There were a lot of laughs,” Dublin remembered.

When the book was completed, the authors felt a wonderful feeling of satisfaction and achievement. However, the finality of it was bittersweet as well. “When I was done, I felt like a friend was gone,” Dublin noted.

Riihinen recognized that as the Alzheimer’s advanced, it was evident the duo had a finite window of opportunity to create the book. “There has definitely been some progression of the disease since this book was completed, so the timing was just right,” she said. “It’s good that they did it when they did it, otherwise the book might not have gotten done.”

Dublin and Kimmerly ultimately hope the book will be as useful, helpful and insightful to those who read it as it was for them as they produced it. “I loved talking about my disease. I’m an educator through and through,” said Kimmerly. “If I can’t let someone feel that they’ve learned something from me, or acknowledged something that they’re feeling, I wouldn’t feel good about myself.”

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~ by Butch on November 4, 2012.

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