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Salter takes her family’s fight against early onset Alzheimer’s to Washington

It has been estimated over 5,000,000 people in the United States have Alzheimer’s disease or other forms of dementia. Despite its increase over the years as the most common form of dementia, Alzheimer’s is not a part of the normal aging process.
Alzheimer’s is a progressive disease. It begins slowly with forgetting words that are familiar or remembering where an object was placed, difficulty recalling the name of a person they were just introduced to, trouble with planning or organizing and experiencing difficulty performing tasks at work. As the disease progresses, they may become forgetful, moody, confused about what day it is, experience changes in sleep patterns, have a tendency to wander and become lost and show personality changes. Eventually Alzheimer’s patients may need full time care, experience trouble swallowing and lose the ability to communicate. The list of symptoms is vast for this incurable disease.
Alzheimer’s does not only strike the elderly over 65. Early-onset Alzheimer’s affects those under 65, and for some stricken with the disease they begin to manifest symptoms in their 40s and 50s. It is estimated that close to 200,000 people have early onset of this debilitating disease. For a small group, scientists have discovered rare genes that cause Alzheimer’s. Carriers of this gene are often stricken as early as their thirties with rapid progression of the disease.
“There are 130 families in the world that carry this mutation,” said Johnson Countian Mary Salter. “Its origin is in Europe.” Of Salter’s three children, two carry the Alzheimer gene.
Salter and her family have struggled with Alzheimer’s for 28 years. Her brother-in-law, the oldest of her husband’s brothers, began to show signs of dementia when he was 37 years old. His mother had also had similar symptoms and died when she was 40. Her medical records told the story that she had died from Alzheimer’s disease. Of Martha’s five children, four died from Alzheimer’s, Butch, Bill, Johnny and Salter’s husband, Bobby.
“Bobby was a vibrant and gifted athlete who began his battle at the age of 36,” said Salter. “He died the day after his 43rd birthday. In a matter of nine years, all four brothers were gone.”
Prior to Alzheimer’s, Bobby was an accountant. He lost his job as he could no longer perform tasks necessary for his occupation. He was unable to feed or dress himself, to remember who he was and who his family was.
We now know the name of the gene that robbed this family of four brothers and their mother. It is called PSENS1.
According to Salter, it is common for Alzheimer’s patients to have strokes, seizures and often to end up on a feeding tube.
Of Salter’s three children, two carry the gene for this rapid and devastating form of Alzheimer’s. “Although I had been told years ago that my three children had a 50/50 chance of inheriting this gene, I chose to put that statistic deep within the place where one puts things they don’t want to think about.”
Approximately five years ago, Salter came upon a study called DIAN. After informing her children of the study, all three chose to become part of the program. Salter’s son, Bryan, was the first to be tested to determine if he carried the devastating gene. Bryan flew to Washington University to receive the results.
“I waited, not so patiently, back home for the phone call that would bring me joy or sorrow,” she said. “I answered that call, my heart beating out of my chest. Without emotion, my son tells me ‘I have the gene.’ There are no words to describe the agonizing pain I felt.”
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